Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

 

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Dry eyes with sarc.
Author: Lynn (---.dialinx.net)
Date:   03-22-02 13:07

At the time I first had a bad chest xray 1/99....my eyes would burn daily. I thought it was just allergies. When I found out by biopsy 8/99 that I had sarc I had the answer to my lung problems. Never went on meds and my symptoms went away in 2000. My chest xray shows improvement each time I have one but I was told by Dr. Sharma that they may never be totally clear again.

Now to my eyes. I found out last year I had dry eyes and that is why they were burning. I know sarcoidosis can be cause of dry eye and I see my eye doctor every 6 months. Last week it was very windy and I started to have some pains in my eye. Saw the eye doctor who said that it was the dry eye and he put plugs in.

My question is....if my sarc went into remission (no symptoms, good ACE, improving xrays)... can my eyes remain dry for life? Should the dry eyes clear up as well? I was thinking that since my lungs may never really clear, then maybe my eyes will never be normal again either. Allergy time is starting and the winds are blowing so I figure that is why they hurt. I have never had them hurt before though.

My MD says it could be Sjogren's but I don't match the criteria for that and in one book I read it said if you have sarc, that is an exclusion for Sjogrens.



Hope I made sense!
Lynn

 
 Re: Dry eyes with sarc.
Author: Admin (---.gtecablemodem.com)
Date:   03-22-02 13:16

Lynn,
I sometimes get red, sore, irritated eyes. Usually in pollen season, or when the cat starts shedding... But it comes and goes depending on my body's overall well-being.

I use "Opticrom" eyedrops, Sodium Cromoglycate 2%. It is a mild anti-inflammatory. These eyedrops work really well. I buy mine when I travel to Europe, they are over-the-counter there and inexpensive. One small bottle lasts for ages...

Now if somebody could just teach me how to aim those drops so they fall into my eyes every time...

..Trevor..

ps: if Dr Sharma says not to worry then I suggest you take his advice. I bet he sees more sarc patients than your eye doctor

pps: The eyedrop is called "Cromolyn Sodium" in the USA. Here is a link to some info about it. Forget about needing to take the drops regularly. One or two (well aimed) drops fix my eyes up. One bottle lasts for years... Looks like in the US you need a prescription from your eye doctor to get it...
http://www.ahealthyme.com/topic/topic100591198

 
 Re: Dry eyes with sarc.
Author: Ken (---.proxy.aol.com)
Date:   03-23-02 18:15

Arerugi 1992 Oct;41(10):1500-6 Related Articles, Books, LinkOut

[A case of sarcoidosis associated with Sjogren's syndrome] [Article in Japanese]

Akiyama Y, Suzuki T, Tanaka M, Katagiri T, Ishibashi T, Imai F, Ohno S, Doi Y.

Second Department of Internal Medicine, Saitama Medical School.

A 49-year-old woman, who has had a past history of Raynaud's phenomenon since 1981, dry mouth since 1987 and dry eyes since 1990, was admitted to our hospital complaining of general fatigue, bilateral gonalgia, and shortness of breath in April 1991. Physical examinations revealed bilateral parotid gland enlargement and bilateral uveitis. Her family history included mixed connective tissue disease in her eldest daughter. Laboratory findings indicated an elevated erythrocyte sedimentation rate, hypergammaglobulinemia, and elevation of serum lysozyme and angiotensin converting enzyme levels. Antinuclear antibodies, anti-SSA antibodies, anti-SSB antibodies were positive, while tuberculin test was negative. Chest X-rays showed bilateral hilar lymphadenopathy and small nodular shadows in both lung fields. Increases in lymphocytes and the CD4/CD8 ratio of T cells were noted in alveolar lavage fluid. Renal biopsy revealed non-caseous granulomas. Other remarkable findings included positive Schirmer's test, apple tree lesions by sialography and chronic sialoadenitis by biopsy of the labial minor salivary gland. On the basis of all these findings, we diagnosed her as suffering from sarcoidosis with Sjogren's syndrome. After oral administration of prednisolone, her shortness of breath, hilar lymphadenopathy and small nodular shadows in the lung field disappeared, but the patient was transferred to the department of urology due to the onset of hydronephrosis. This case is noteworthy because sarcoidosis associated with Sjogren's syndrome has been reported in only 11 cases in the literature.

---------------------------------------

Nippon Ronen Igakkai Zasshi 2001 Mar;38(2):229-34 Related Articles, Books, LinkOut

[Two elderly patients with sarcoidosis and Sjogren's syndrome] [Article in Japanese]

Araki T, Katsura H, Motegi T, Yamada K, Uehara T, Gotoh R, Kida K, Esaki Y.

Pulmonary Division, Tokyo Metropolitan Geriatric Hospital.

Two elderly patients with sarcoidosis complicated with Sjogren's syndrome are described. Case 1: A 70-year-old woman was admitted due to dry eyes. Histological examination of a minor salivary gland specimen revealed lymphocytic infiltration, which was compatible with Sjogren's syndrome. Because uveitis was demonstrated, transbronchial lung biopsy (TBLB) was performed, to confirm a diagnosis of lung sarcoidosis. Histological examination of TBLB showed non-caseating granulomas compatible with sarcoidosis. Case 2: A 70-year-old woman was admitted due to dyspnea on exercise and blurred vision. Two years previously, Sjogren's syndrome was diagnosed because of a positive Shirmer test and positive SS-A antibody. Result of ophthalmic examination were compatible with uveitis. Histological examination of TBLB showed non-caseating granulomas compatible with sarcoidosis. Certain similarities between sarcoidosis and Sjogren's syndrome in terms of immunological aspects have attracted attention. In the present manuscript, a possible relationship between the two diseases as well as the characteristics of elderly sarcoidosis are discussed.

 
 Re: Dry eyes with sarc.
Author: elaine emmi (---.client.attbi.com)
Date:   03-23-02 20:01

Hello all,

Tho being diagnosed with sarcoidosis in 1976, I had suffered lesions on my eyes and dry eyes for 13 years earlier. Had to give up contacts and no one could figure out what was wrong with my eyes, no one made the connection. All these years later, tho 'in remission', I continue to have eye problems. Dry eyes, conjunctivitis, bletheritis and an occasional granuloma in my eye. I have them checked every year and when really irritated use natural tears (no preservatives). All the drops similar to what Trevor talked about I eventually became allergic to....... They seemed to work for 2 years and then stopped.

The best thing I have found is to steam my eyes with a clean wash cloth twice a day.

My pulmonary doc thinks I have Sjogren's and will check with my opthomologist this spring to confirm.

It seems like we have to figure a lot of these issues out for ourselves - this phorum/forum sure helps!

Elaine

 
 Re: Dry eyes with sarc.
Author: sueuk (---.cache.pol.co.uk)
Date:   03-25-02 14:22

Hi,
I don't know about dry eyes and sarc,but do suffer with the problem,I have rheumatiod arthritis.In the Uk the best thing I've found is" viscotears"
its a gel and is the only thing for me that doesn't just evaporate.I think you should always take note of dry eyes as the cornea needs moisture to remain healthy.The first time I had the problem and I'm pleased it's never been as bad since......when the drs realised what was happening my corneas had eroded.......healed perfectly I'm glad to say.
Best wishes,
Sueuk

 
 Re: Dry eyes with sarc.
Author: marianna (---.sympatico.ca)
Date:   04-29-02 14:25

I had dry eyes for years especialy in the evening. Very often I just went to bed very early because I could not watch TV or read a book it hurt to much.
Now I have the opposite and my eyes constantly water. I have been blinded twice because of sarcoid, I used prednisone drops and my sight came back. Now I have a lot of irritation in my eyes. I am not taking any medication for this situation any more.

 
 Re: Dry eyes with sarc.
Author: John W (---.alphalink.com.au)
Date:   04-30-02 01:37

Lyn, dry eyes can be symptom of sarc but more often a symptom of ageing, particularly if you are over 40 & especially if over 50. Many people in these age groups like me use lubricating drops several times a day. they make a wonderful improvement in qality of life. regards, john

 
 Re: Dry eyes with sarc.
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   05-01-02 09:44

I finally had plugs put into my lacrimal glands. It has not stopped the burning at all. Now...does that mean the burning was NOT from dry eyes?

The opthomologist said my eyes were "mildly dry" and since I live in a low humidity (10% average and yesterday was 8%) that it could be environement mixed with age (I am now 40).

If it were the dry eyes causing the burning I would think that plugging them would have stopped it. It hasn't.

Have no clue what it is...allergy eye drops don't do a thing for it.

Lynn

 
 Re: Dry eyes with sarc.
Author: Admin (207.175.253.---)
Date:   05-01-02 09:48

Lynn,
What types of "allergy eye drops" have you tried?

..Trevor..

 
 Re: Dry eyes with sarc.
Author: John W (---.alphalink.com.au)
Date:   05-01-02 14:54

Lynn, I dont know what plugging your eyes means. Have you tried lube drops such as Artificial tears. I find the allergy drops can aggravate dry eyes. Canberra has very low humidity to. Secret of drops is to use hourly for two complete 15ml bottles. After that reduce frequency to "as needed". I find now about 4-5 times a day
John

 
 Re: Dry eyes with sarc.
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   05-01-02 15:03

Here's info on eye plugs...FYI.

Lynn

 
 Re: Dry eyes with sarc.
Author: Mary Mommer (---.tnt1.waterloo.ia.da.uu.net)
Date:   05-13-02 09:36

I have been reading your interesting post. I have been diagnosised with cardiac sarc. and sjogrens.

I also have plugs in my tear ducts and must use hyralunic acid in my eyes as even artificial tears don't help. The acid is made in a specality pharmacy. I see an optomologist once a year.

 
 Re: Dry eyes with sarc.
Author: Rae Busse (24.68.184.---)
Date:   06-04-02 14:38

Hi Mary........I was very interested in reading that you were diagnosed with cardiac sarc. It seems to be fairly uncommon. I was diagnosed 5Yrs ago with pulmonary sarc and then cardiac sarc and ended up having a pacemaker inserted. The last visit to see my cardiologist told me that any further damage to my heart other than the ectrical conduction is so rare that I shouldn't be concerned as I have the pacemaker to take care of the initial damage. Doesn't make sense to me!!! I am having problems with my eyes. Every once in a while my vision goes blurry, its like looking through a fog. Could this be related to the sarc? I also have numerous floaters. The opthomologist I saw only dilated one eye and said there was nothing wrong with my eyes. Should I get another opinion?
I would like to hear from anyone else who has cardiac sarc....Rae

 
 Re: Dry eyes with sarc.
Author: Caroline (---.win.org)
Date:   06-04-02 20:44

Hello Rae,
I would definately get another opinion. Speaking only of my experience with Iritis, your symptoms are very familiar. Not to worry you but I lost vision even while being treated by an excellent doc. My first symptom accompanied by pain and photophobia was floaters, then the feeling of looking thru gauze.

Your doc should have dilated 'both' eyes and examined both thoroughly by slit lamp.

Everyone is different but to err on the side of caution I would see someone else immediately. Hopefully you will just have peace of mind. Caroline

 
 Re: Dry eyes with sarc.
Author: Rae (24.68.184.---)
Date:   06-05-02 08:33

Thanks for the advice Caroline. I will ask to be refered to another opthomologist. What exactly is photophopia?...Best wishes ... Rae

 
 Re: Dry eyes with sarc.
Author: Caroline (---.win.org)
Date:   06-05-02 10:35

Hi Rae,
Photophobia is pain from the light. Mine was VERY painful but I think it can also be milder, but I am unsure.

I am so happy to hear that you will get another opinion. This disease takes so much as it is, we don't need to lose vision unnecessarily from poor medical treatment. I ended up being treated by a second opthamologist (my first was lousy) who would occasionally send me for a consult with an associate professor at the teaching hospitals eye institute.

I've had correction (glasses and contacts), since a kid but now with correction one eye is only correctable to 20/50.

Of course I will never be certain but I don't feel this would have happened with the proper treatment from the beginning.

Typing [Iritis or Uveitis] in your browsers search will yield many informative links. Or try [sarcoidoisis + iritis]. Good luck to you!

Take care, Caroline

 
 Re: Dry eyes with sarc.
Author: Debbie (---.lai-ca-1-136.rasserver.net)
Date:   08-05-02 19:59

i read your message about having dry, burning eyes. i also have that. you mentioned that the dr. put "plugs in". What do you mean by that?
Have your eyes gotten better as a result?

 
 Re: Dry eyes with sarc.
Author: shelagh (---.proxy.aol.com)
Date:   08-07-02 10:37

hi

anyone heard of sarcoid causing swelling of the optic discs? i was diagnosed as having choroidoretinitis last year, and am not sure whether this is the medical name for swollen discs or whether the disc swelling is incidental to the choroidowhatsit or what the heck it is. any advice or info please? also, is trigeminal neuralgia usually associated with the sarcoid - or is that something completely separate? thanks for any help. shelagh

 
 Re: Dry eyes with sarc.
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-07-02 10:57

Shelagh,
Trigeminal Neuralgia is one of the red-herrings thrown out by U.S. neurologists to try to explain palsy and pain due to high levels of 1,25-dihydroxyvitamin D in sarcoidosis and tuberculosis. If you were being treated in France your Neuro symptoms (palsy and pain) would be correctly treated as part of the Sarcoidosis. Not in the US, for some reason. Neurologists here try to pretend you don't have a granulatomous disease. You do.

Get the tests done so you can discuss the test results with your neurologist (and your endocrinologist) and stop the worrying.

..Trevor..

 
 Re: Dry eyes with sarc.
Author: Kirk Edwards (---.sd.sd.cox.net)
Date:   08-07-02 21:49

Hello,
I moved to Phoenix 18 months ago and had to stop wearing my contacts. I constantly had a film on them (gas permeable) and cleaning and drops didn't seem to help. It was only a short time after putting them in that they started to film over and hurt. I moved back to San Diego and thought I could possibly start wearing them again since it is a lot more humid here. Not so. My right eye is far worse and does give me pain occasionally. I didn't think about it being dry eye from the sarcoidosis. I was examined, but nothing was concluded. No one ever said the dry eyes could be from the sarcoidosis. Can soft lenses work? Wearing glasses drives me crazy and my vision isn't as good. I also have arthritis from the disease and my lungs are severly damaged. I'm 53 and have had the arthritis since I was 19. The lung problem I don't know, but it was found in 1981 by accident.
Kirk

 
 Re: Dry eyes with sarc./Debbie
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   08-07-02 23:27

Debbie..you can read about the plugs here:
http://www.drwalji.com/dry.html

If you have true dry eye, then they are supposed to really help. If your eyes are very dry then they can plug the upper glands as well.

I am thinking my burning eyes has nothing to do with the mild dryness they said I had. I had them put in the bottom only and it has not helped with the burning.

Lynn

 
 Re: Dry eyes with sarc.
Author: angie (---.cache.pol.co.uk)
Date:   06-15-03 11:41

i have had all sorts of eye problems one after the other continuois floaters dry eyes blepharitis chronic allergic conjunctivitis and it is really frustrating i am constantly at the eye hospital in so much pain to get told something else i feel i have not got a normal life because of all these problems and i feel there has got to be an explanation to all of this but nobody can seem to help it is driving me mad. angie

 
 Re: Dry eyes with sarc.
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-15-03 13:06

Angie,

Welcome to SarcInfo. You have found the right place for answers. I hope you will spend some time reading the information here, beginning with the tutorials at the top of the page.

The correct protection of your eyes against light helps significantly. Read this tutorial from the list of tutorials at the top of the page. I know I functioned much better once I began wearing my NoIR sunglasses that block ultraviolet and infrared light. I ordered two pair: a lighter one for computer work and late evenings and the darker ones for times I am outdoors in daytime or in buildings with open windows. These are relatively inexpensive, and those of us who've tried them think they are worth the investment. They certainly help with some of the pain.

Many of us use the lubricant eyes drops for dry eyes. I am using less of these drops since I have been on antibiotic therapy, though.

If you have any technical questions, feel free to post them on this forum. There are plenty of folks here happy to help others understand this disease.

Best wishes,
Belinda

 
 Re: Dry eyes with sarc.
Author: Abdul Rehman (203.91.134.---)
Date:   07-27-03 23:28

hi sir,

I wanted to know about advantages of sodium cromoglycate in eye treatment.could u do me a fever that u will further provide me some information about the affect of TOBRAMYCIN ANF HPMC IN EYE TREATMENT .
The information may u had.Kindly provide me some detail about ROLE OF SODIUM CROMOGLYCATE IN EYE TREATMENT .

THANX.

 
 Re: Dry eyes with sarc.
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-03 06:04

Abdul,
You will find that information at

http://www.RXlist.com

..Trevor..

 
 Re: Dry eyes with sarc.
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-28-03 06:25

Abdul,

You can also find drug info here

Meg

 
 Re: Dry eyes with sarc.
Author: Cheryl Woods (---.proxy.aol.com)
Date:   07-29-03 18:57

I also have sarcoidosis and I suffer with the burning and dry eyes. Thanks to someone named Meg, this site has truly informed me about some things. I could never figure out why I had a low tolerance for heat. It is simply amazing to me what you can find out through this site that the doctors don't know about. However, currently my biggest question yet is why I am experiencing this chest pain like a hurting muscle in my heart somewhere that the doctors have not been able to figure out. Does anyone have the answers. The smallest amount of exertion and I began to hurt; is this inflammation.

 
 Re: Dry eyes with sarc.
Author: Denise (---.connect.com.au)
Date:   07-29-03 22:13


I felt dreadful for a couple of years. Dry eye was one of the first things I tested positive for. The ophthalmologist I saw told me I may get arthritis down the track and suggested I use eyedrops.

I was not satisfied and wanted to see an immunologist which I did for two years. I had weird symptoms which seemed to match up with the Sjogren's Syndrome which was what the doctor I was seeing was fixated on for the two years under her care. I had abnormal tests relating to the kidney and dry eye and a raised ESR and CRP plus abnormal immunoglobulin tests. The ANA and SSA SSO antibody tests were normal. They said I did not have Sjobren's or Lupus but neither was I a picture of health. They told me I wouldn't die and if I was in pain to take a NSAID and have a cuppa tea.

I began to get worse and decided to see another immuno for a second opinion. He also was fixated on the Sjogrens and my dry eye had worsened. He didnt tell me but I knew from having had it tested before. I was at my wits end and determined to find out what was ailing me. I had tests done for dermatomyositis and myositis which were clear. Then I got the EN and I realised that I had Sarc from reading up on diseases which correlated with my symptoms, inc. abnormal tests results. I also had a cough by this time. I gave the doc a chance to work it out but in the end I had to tell him what I thought it was and ask to have an x-ray.
I went back to the immuno I had been seeing for two years and she was rather defensive when I told her I had been diagnosed with sarc. I never went back to see her again. I also cancelled my appointment with the second opinion guy. When people get fixated on one thing they become blind to other possibilities.

I still have dry eye and just use saline when I need it which, isn't too often, although my eyes haven't improved. I wear glasses when I am sitting in front of a computer simply to allay evaporation, and try to remember to blink often. I don't know how I would manage plugs which, I have been threatened with. Is it horrible to have them installed? Do they cause discomfit?

Denise

 
 Re: Dry eyes with sarc.
Author: bpeck (---.bluebird.ibm.com)
Date:   07-30-03 06:25

Having had ever worsening Dry Eye for several years, preceeding ever worsening Red eye... which preceeded Anterior Uveitis I understand
the concern over your eyes.

Since antibiotics (for the correct diagnosis of Lyme - finally!!) Dry eye
is a thing of the past (and I had to used artifical tears many many times per day and night at it's height).

The problem was bacteria.
If you even think the problem may be bacterial based - then I would avoid the plugs. I'm so glad that my stubborness (beleiving there was a bacteria at the root of my problems) kept me from giving in to what my Ophthalmologist wanted to do. And I still have the same eye Dr.
Actaully- he's come a long way. He's starting to entertian the thought of slow growing bacteria.

Barb

 
 Re: Dry eyes with sarc.
Author: Jim Sellers (167.106.254.---)
Date:   07-30-03 06:37

Cheryl,

I also have suffered from pains that seemed to be coming from my chest and the middle of my back. In fact, that is how the PA found my sarc. I returned to the doctor when the back pain continued to get worse and the PA had a chest/back X-RAY done. That is when they found the inflamed lymph nodes in my lungs and continued other tests including a lung biopsy that eventually lead to the sarcoid diagnosis. My guess is that this inflamation is causing our pain. My pulmonary doctor has given me ADVAIR, but I am continuing to look for a doctor that will prescribe the benicar/minocin treatment. I am fortunate that the pain was not too bad and I forced myself to get on the treadmill and do some exercise every night. I started out slow and have steadly increased the workout. This seems to make me feel better and reduce the pain, but I'm not sure why. Perhaps Treavor or one of the site moderators has an opinion on this.

 
 Re: Dry eyes with sarc.
Author: Rox (---.cache.pol.co.uk)
Date:   10-20-03 07:36

Hi
I have swollen lacrimal gland's due to sarc. The main symptom of dry eyes is exessive watering, The lacrimal gland's bath the eyes ------- damaged gland's do not produce tears, the other tear gland's in the eye try to compensate by watering exessively. I use steroid drops. hope this is some help.

 
 Re: Dry eyes with sarc.
Author: bpeck (---.co.us.ibm.com)
Date:   10-20-03 10:51

I have a question.
Are the lacrimal glands swollen in becaase inflammation accumulates there, or are there CWD variants actually in there causing an immune reaction within the gland?
Barb

 
 Re: Dry eyes with sarc.
Author: Admin (---.dsl.dock.net)
Date:   10-20-03 11:00

Barb,
All inflammation in a sarc patient's body (or nearly all the inflammation) is sarcoid inflammation, which is caused when the bacteria infect tissue and then infect the phagocytes which come to clear them out.

The swollen glands may be due to inflammation itself, or to the caustic cytokines (including 1,25-D) which are emitted from nearby inflammation.

..Trevor..

 
 Re: Dry eyes with sarc.
Author: Rox (---.cache.pol.co.uk)
Date:   10-25-03 10:16

Hi bpec
The lacrimal glands are swollen with sars inflamation thats all I can tell you
cheer's Rox

 
 Re: Dry eyes with sarc.
Author: DJ (---.27.98.194.dial1.denver1.level3.net)
Date:   11-14-03 06:48

Hi all!

Just had a re-exam by the opthamologist. Ten months ago he had said that my chronic blurry vision and red, sore eyes was just dryness. No sign of sarc problems. This time, he said there was a problem with the lacrimal glands and oil glands in the lid. Said it definitely could be sarc related, could cause my vision changes, and he would prescribe minocycline for it.

I am already on Minocycline, but it was gratifying to to have his acknowledgment of the cause of my problems (and confirmation that there was no nerve damage involved.) Also, this may be another path to getting the needed Minocycline Rx for those with reluctant internists and pulmonologists.

DJ

 
 Re: Dry eyes with sarc.
Author: shelagh (---.proxy.aol.com)
Date:   02-07-04 08:56

hi

i had very useful advice from you some months ago - had choroidoretinitis and swollen optic discs. can you help again? i am having problems with dry eyes, blurred vision and floaters; i saw my gp who referred me to the emergency clinic at the local hospital, where i was seen by a registrar who spent three minutes examining my eyes with a slit lamp; however he didn't dilate either eye, but nevertheless said he could see no sarcoid involvement. he suggested that bifocal spectacles might solve the problem.

my vision is such that i feel i am only seeing out of part of my right eye. i can read perfectly well for a period of time, then it is as though my glasses mist over and my sight is very disturbed. does this sound as though the sarcoid is active or am i reading into the problem something that isn't there? it is not very easy to get a second opinion; my gp is very helpful but willingly admits he has never 'met anyone with sarcoid before - thankfully'. where would you go from here, please?

shelagh

 
 Re: Dry eyes with sarc.
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-07-04 09:37

Shelagh,

Special glasses that completely (or almost completely) block the lightwaves that cause problems with sarcoidosis patients are necessary if you have blurred vision and floaters. These are available, at moderate cost, from NoIR. You can read Trevor's recommendations about sunglasses here. You need close-fitting, wrap-around frames to ensure as much light as possible is blocked, and in the short term, you need to wear glasses indoors where there is streaming sunlight, bright reflected light, and when you are at your computer. It will help to dim the brightness on your computer monitor.

Are you taking these precautions? Are you limiting your vitamin D intake by mouth? Are you protecting your skin from sunlight? These precautions help most patients, to some degree.

Finally, are you taking Benicar/Olmetec? This is what has helped many sarcoidosis patients with optic involvement. You can read their stories on these threads:

Eye problems, cataracts

assorted eye problems

Belinda

 
 Re: Dry eyes with sarc.
Author: Steve Backes (---.tnt2.ij.net)
Date:   02-27-04 20:09

As someone who spends time looking for detail on a fast moving hummingbird, I've always needed good sight. I've been concerned with a noticeable loss of clarity in my vision for the past year or so. I can see okay for everyday purposes but do notice a loss of clarity if I looked to the right. I saw my ophthalmologist a couple of weeks ago expecting to get a major boost in my prescription but wound up being told that one eye is actually improved slightly over my last exam.

My ophthalmologist was a bit confused by my description of my symptoms but shrugged them off as dry eye and gave me a number of different moisturizing drops to try. Some make my eye feel better but they don't solve the problem. BTW, he knows of my sarc and did not see any indication of damage caused by it.

I've since come to realize that my right eye is not focusing when I'm also using my left eye. If I place a hand over my left eye my vision is blurred. In about 5 seconds, I can see my right eye moving into focus. It's very similar to as if I was focusing binoculars. I don't seem to have any depth perception with the eye (kind of tunnel visioned) and if I look somewhere else with my right eye I go through the slow focusing again.

I've read a number of posts of people describing eye problems similar to mine but none describing the focusing issue that I've just discovered. Has anyone else noticed their blurry eye being slow to focus?

Thanks,

Steve

 
 Re: Dry eyes with sarc.
Author: Margo4 (---.dsl.intrex.net)
Date:   02-28-04 11:52

Steve,

Some eye problems in sarcoidosis are quite serious. Most ophthalmologists see these problems so rarely that they may not recognize what is happening. I would try to get an evalution by a specialist in ocular inflammatory disease. (Check the site, www.uveitis.org for a list of ophthalmologists with an interest in uveitis and ocular inflammatory disease. You can also write the moderators to see if they know anything more about these people.)

Dry eyes is one symptom that can be associated with sarcoidosis.

Have you asked your doctor about the problem getting one eye to move into focus as quickly as the other? I would worry about undiagnosed inflammation in the eye causing problems.

Margo

 
 Re: Dry eyes with sarc.
Author: Steve Backes (---.tnt2.ij.net)
Date:   02-28-04 13:22

My ophthalmologist is also my brother-in-law. He is familiar with my condition and he knew my visit was a sarc follow-up specifically to look for the sarc related diseases (symptoms). He did the most thorough exam I've ever had and included the recommended slit lamp. He also included a visual field test. I had that before when I was suffering with migraines. He did not find anything with the test other than a need to reduce my prescription in one eye and a need for reading lenses. He does not want to make any changes to my prescriptions until after I'm off the prednisone.

He does not know of my slow focus problem as I've just realized it in the past couple of days. Perhaps it's a result of vitamin D levels and wasn't present at the time of my exam. I was hoping someone would be familiar with what I've described and might give me more information to pass on to my ophthalmologist. I hope to speak with him after the weekend.

I may have exagerated the time it takes to focus as my count of five is actually probably 2-3 seconds. It just seems longer when it's happening to you.

Steve

P.S. Btw, I found Sarcinfo second on the list searching "sarcoidosis + eye + focus". I originally found sarcinfo searching for skin sarcoids.

 
 Re: Dry eyes with sarc.
Author: Margo (---.dsl.intrex.net)
Date:   02-29-04 19:09

Steve,

In my earlier post, I just wanted to point out, to you and to others who might read this, that sarc-related eye problems are rare enough that many ophthalmologists hardly ever see anyone with them. Although the doctor can become familiar with the textbook information and with newer research, it can still handicap the doctor if he has not seen the variety of eye manifestations of sarcoidosis.

Unfortunately, sometimes people are told that their eye problems are not serious when they are actually beginning to suffer damage to their eyes, because of the doctor's unfamiliarity with the disease.


Margo

 
 Re: Dry eyes with sarc.
Author: Steve Backes (---.tnt2.ij.net)
Date:   02-29-04 20:50

Margo,

Thanks. My wife is taking a note to her brother (my ophthalmologist) Monday morning describing my symptom asking him to get back with me ASAP (cutting out the need to miss work and be worked into the "schedule"). The link you supplied in your previous post included a doctor in Tampa if necessary after I speak with my doctor. Hopefully this symptom will lead to a better understanding of my problem. The advantage of family being your doctor is that it's one less bill to pay (not that that's an alternative to good medicine).

Steve

 
 Re: Dry eyes, bletheritis
Author: gene (---.nas8.little-rock1.ar.us.da.qwest.net)
Date:   03-04-04 17:42

My opthomologist diagnosed bletheritis several months and Rx'd tetracycline for two months then doxycycl hcl for two months, also Patanol. None of this seems to give any relief. Does anyone have any suggestions or ideas of treatment.
thanks

 
 Re: Dry eyes with sarc.
Author: Margo4 (---.dsl.intrex.net)
Date:   03-04-04 18:51

Steve,

The doctor in Tampa (Mark Hammoer) is a member of the American Uveitis Society, but his advanced training is in retina.

Miami and Atlanta are the nearest places with uveitis specialist resources.

You can check qualifications on the aao.org site (American Academy of Ophthalmology).

Margo

 
 Re: Dry eyes with sarc.
Author: Margo4 (---.dsl.intrex.net)
Date:   03-04-04 18:54

Gene,

Is your blepharitis associated with sarcoidosis? I would think that long-term resolution would come with treatment of the sarcoidosis.

For general information on blepharitis, you might want to check the following link:

http://www.uveitis.org/patient/glossary/a_f.html#BLEPHARITIS

You might also ask the support-group site at http://pub24.ezboard.com/buveitissupportmeei . Others at that site have dealt with blepharitis, and might have some insight.

Margo

 
 Re: Dry eyes with sarc.
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-04-04 23:07

Hi gene,

Welcome to SarcInfo. Do you mean blepharitis? This is an inflammation of the edges of the eyelids involving hair follicles and glands that open on to the surface. Do you have a diagnosis of sarcoidosis also?

Tetracycline and doxycycline were probably the wrong antibiotics. I'll email you information about using SarcInfo and how to start the Marshall Protocol. Please let us know if you have any more questions.

Meg

 
 Re: Dry eyes with sarc.
Author: bpeck (---.bluebird.ibm.com)
Date:   03-05-04 05:43

Gene:

Seriously, talk seriously to your Opthalmologist.

(s)he should be identifying the pathogen responsible for the blepharitis.
AND testing antibioyic susceptibilites. Bleph is usually staph or strep. and
both have a high resistance to alot of antibiotics.

If they haven't cultered it to specifically identify the pathogen, then they should - then run some antibiotic sensitivities tests on it, so they give you one that works instead of doing a "abx round robin".

Barb

 
 Re: Dry eyes with sarc.
Author: Steve Backes (---.tnt3.ij.net)
Date:   04-05-04 16:45

I posted in Feb on this thread that I was having a problem with my right eye being dry and being slow to focus. A check of my prescription showed that my eye had gotten better and my glasses lens was too strong. A change in lenses relieved the dryness some and improved the focus issues.

Both eyes have been "tired" the past few days. Yesterday, I noticed while looking at a clear blue sky with the sun behind me, that I had floaters. I had a small crescent shaped area in my left eye and large pattern in my right. I was seeing three small "spots" with two long hairs below them that stretched about half way across my field of view. Looking under similar conditions today while slowly waving my head back and forth, it looked like light wisps of smoke wafting back and forth in front of me. There has been an increase in the floater in my left eye today.

I was set up for an appointment with the retinal specialist for next week but was advised to make it sooner if things got worse. I'm going to be calling to reschedule in the morning.

I should add that I'm currently on 10 mg pred daily. I have been noticing an increase in sinus pressure and drainage over the past few days. My sarc cough appears to be coming back. I've got some eye pain but it may be related to the sinus pressure.

Is anyone familiar with symptoms like I've tried to describe?

Thanks,

Steve

 
 Re: Dry eyes with sarc.
Author: Kerry (136.226.254.---)
Date:   10-28-04 14:09

I was diagnosed with sarc 2 years ago during an annual physical. A biopsy confirmed it to be in the lungs. Sub-sequent x-rays showed it to be getting better. Two weeks ago I had a full eye exam with no problems. 3 days ago I developed intense pain in the right eye, couldn't sleep, and the PA here linked it to my sarc. Is it normal to just affect the right eye? All I could get here (remote arctic location) is lubricating drops which I use every half hour, and it's helps a little. I'm up every half hour all night long putting them in.
Not a lot of fun.

 
 Re: Dry eyes with sarc.
Author: Margo4 (---.dsl.intrex.net)
Date:   10-28-04 16:49

Sarcoidosis can affect any organ of the body. It can affect just one eye, though often both are involved.

Is the problem with the eyes clearly dry eye? Sarc can cause other eye problems. There are some hints about handling dry eye, here, at our sister site, The Marshall Protocol and Dry Eyes

How long until you can get a comprehensive eye exam? Eye inflammation can be very destructive, so you need to stay on top of it.

Although patients are often told that sarcoidosis goes away by itself, it isn't so. Recent research (the ACCESS study) bears this out. Please read the Patient Tutorials, at the top of the page, about how to treat sarcoidosis, and write back with any further questions.

Margo

 
 Re: Dry eyes with sarc.
Author: Lottie (---.proxy.aol.com)
Date:   10-28-04 20:58

Kerry,

Welcome to SarcInfo.

Yes, it is possible for only one eye to be affected at a time. My left eye is more of a problem than my right eye has ever been.

There are some lubricating eye ointments formulated for use in the eyes at night time which last longer. They are available over the counter, usually in the same shelf space as the lubricating eye drops. Please ask your doctor if it's all right for you to use them. That may help you get through the night.

Some of the lubricating eye drops are also available for people with extreme dry eye which may help more than the ones you are using.

Lottie

 
 Re: Dry eyes with sarc.
Author: Kerry (136.226.254.---)
Date:   10-29-04 10:05

I don't get back to the real world for another week so can't really get my eyes checked any better until then. With the slit lamp we have here it definitely shows the right eye to be dry though. I guess I'm one of those that thought the sarc would just go away. After finding this site and reading through it, I've realized how ignorant I was. A lot of the symptoms I've had, just never traced it to the sarc. This has been quite the eye opener. A little depressing, but helpful. Thanks to all of you for taking the time to help the rest of us out!

 
 Re: Dry eyes with sarc.
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-29-04 10:32

Kerry,
Don't be hard on yourself, even physicians do no put the symptoms together well. You just might have to educate yours. Many have perpetuated the myth that sarcoidosis will just burn itself out.
Caroline

 
 Re: Dry eyes with sarc.
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.ne)
Date:   10-29-04 15:44

I have also had continuing eye pain and dry eyes. The doc always says it is just dry eyes, to keep them lubricated. When I get my tests and get on the Marshall Protocol, will this be eliminated? Bonita

 
 Re: Dry eyes with sarc.
Author: Margo4 (---.dsl.intrex.net)
Date:   10-29-04 17:34

Bonita,

If the dry eyes and eye pain are caused by the sarcoidosis, then the MP should, over time, help them.

Margo

 
 Re: Dry eyes with sarc.
Author: Carol (---.proxy.aol.com)
Date:   10-30-04 07:55

I also have Sarcoidosis and was told I have Sjogren's (dry eye). Drops didn't help all that much and suffered the burning. Also felt as if sand was in my eyes. I am now on Evoxac 30mg cap tid. That solved my problem. Hope this will help others.

 
 Re: Dry eyes with sarc.
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-30-04 11:02

Carol,

Evoxac stimulates the salivary glands to produce more saliva so you will feel more comfortable. This type of symptom relief is called palliative and has been the only kind of treatment for Th1 disease up to now.

The Marshall Protocol is a curative treatment. It is designed to eliminate the cause of your symptoms and result in permanent remission. Unless you kill the bacteria that are triggering your sarcoidosis and Sjogren's disease, they will continue to multiply and your condtion will deteriorate.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

 
 Re: Dry eyes with sarc.
Author: Carol (---.proxy.aol.com)
Date:   10-31-04 21:44

Meg, thanks for your reply on Evoxac. I am getting ready to start The MP as soon as I am off Prednisone (5mg) at present. My NoIR's are on there way. And I am preparing print outs for my doctor. I am trying to learn all I can about MP. I am excited to know I have the support I need to get started. I am now looking at foods that are safe while on MP. There is a lot to learn. Thanks, Carol

 
 Re: Dry eyes with sarc.
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-31-04 22:13

Carol,

Those last 5mg of prednisone can be really tough to wean from. Be sure to read our Weaning guide at the top of this page. Are you taking Benicar to help with the withdrawal symptoms? How long have you been on prednisone?

Best,

Meg

 
 Re: Dry eyes with sarc.
Author: Carol (---.proxy.aol.com)
Date:   10-31-04 22:24

Meg, the sad news is that I have been on predisone for five years. And do suffer the consequences. Hip and bone are just the start.You understand the facts on that one. No I am not on Benicar as of yet.I am trying to get all the information in order for my Doctor. He seems to want to work with me.

Carol

 
 Re: Dry eyes with sarc.
Author: Carol (---.proxy.aol.com)
Date:   10-31-04 22:29

Meg, I am also getting off Hydroxychlor. I think that has to be done also.

Carol

 
 Re: Dry eyes with sarc.
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-31-04 22:42

Carol,

You've been on prednisone so long that there is a chance your adrenals won't come back. You'll need to have blood levels checked as you inch down to make sure that they will function again. An injection of ACTH is sometimes given to stimulate them. Tell doc that getting a Benicar blockade in place would greatly help decrease the withdrawal symptoms.

Both Ms Dale and Lottie can offer you better advice than I can because they have been where you are.

Best,

Meg

 
 Re: Dry eyes with sarc.
Author: Lottie (---.proxy.aol.com)
Date:   11-01-04 02:01

Carol,

I was on Prednisone for five years as well. I recently weaned off of it using the instructions in Weaning from Prednisone. I was on Benicar for a week or so while weaning, and it does help a lot. Be sure that you take the Benicar ON TIME. And, at least every eight hours.

It did take a while. After I was off for a week, my cortisol level was borderline low. It bounced around for several weeks, and finally seemed to settle a bit below the middle of normal to low normal. So, I finally started th Minocycline.

(I've also lost weight, and my face is now MY normal round face back)

Hang in there! You can do it

Lottie

 
 Re: Dry eyes with sarc.
Author: Carol (---.proxy.aol.com)
Date:   11-02-04 22:24

Lottie, it will be so nice not to have that moon face. I have gained 70 lbs on prednisone. And will be so happy to start dropping some of this extra weight. I plan to stay on MP as long as it takes to feel well again. Sarcoidosis is so painful and the prednisone made things even more painful. But I see a light at the end of the tunnel. And have hope. I have ordered my sunglasses. Have darken my bedroom. Now searching for foods I can eat.

Thanks,
Carol

 
 Re: Dry eyes with sarc.
Author: Denise (---.nsw.bigpond.net.au)
Date:   11-03-04 02:42

I was struck when I read the start of this thread that Lynn mentioned the doctor diagnosing her with dry eye. I wonder what basis he made this diagnosis on.
Secondly, Lynn mentions he offered her lacrimal plugs but her eyes continued to burn.
This does not sound like dry eye. If you look down to Ken's post on Sjogren's you will see here that a diagnosis of dry eye was made on the basis of Schirmer's test, which is a crude way of measuring the tear production of the eye. They can also test how much damage is being done to the corneal tissue with a stain.
If Lynn did not get a Schirmer's test done, which is done by inserting thin strip of filter type paper under the lower lid for about 5 mins then I don't know on what criteria he made that judgement.
I have had proven dry eye in my left eye since 1995, up to recently my right eye has been within normal range. Bilateral dryness would be common in Sjogren's. I had unilateral dryness. I have biopsy proven sarcoid and have had a resumption of symptoms this year, including the eye problems. They are convinced it is the sarcoid that has now affected the right eye also.
I have had the plugs inserted in the lacrimal ducts and have had some relief. I used Systane drops and am presently trying a gel at night.

If plugs and lubrication don't help then it is probably an allergy. Dry eyes also conversely tear on occasion.

Denise

 
 Re: Dry eyes with sarc.
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-03-04 06:47

Denise,

Patients being treated with the Marshall Protocol do not have to continue the endless series of tests to determine what body part is now failing. The MP is a curative therapy because it treats the underlying cause of sarcoidosis dry eye. Lacrimal plugs and eye drops are a palliative therapy given to treat symptoms and offer comfort only. The condition of your eyes will continue to deteriorate unless you are treating with the MP.

Best,

Meg

 
 Re: Dry eyes with sarc.
Author: Marypat (---.proxy.aol.com)
Date:   11-03-04 07:45

Denise,

For the whole year before I found SarcInfo I was at the eye Dr. so much they were calling it my second home. He said he had never seen such dry eyes. I was using drops all the time. I had 'plugs' inserted a couple of times. Am not sure that it helped much.

Then I found this wonderful site and changed my diet immediately, also got NoIr glasses and got out of the sun. Within 2 weeks I was able to discontinue the drops and within 3 saw my eye Dr. He was surprised at how the diet and lifestyle had improved my eyes. I haven't had to go to him except for my yearly exam since.

This great improvement happened long before I found a Dr. willing to actually read the excellent information on this site and start me on the MP.

Hope you see much improvement soon after you begin working to get your health back by following the MP!

Marypat

 
 Re: Dry eyes with sarc.
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.ne)
Date:   11-04-04 19:20

I have also had bleeding in my eyes. Doc says it is not from my diabetes. He was not sure what it is from. Could this be sarc again? Bonita

 
 Re: Dry eyes with sarc.
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-04-04 21:36

Bonita,

Sarcoidosis is a systemic disease that can affect any part of your body. When a sarcoidosis patient develops a new symptom, sarcoidosis inflammation should always be the first suspect.

Best,

Meg

 
 Re: Dry eyes with sarc.
Author: Bonita (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date:   11-30-04 06:02

I need to keep reading all of your site so that I am very well informed, but my eyes are burning and hurting so bad I will have to stop reading excessively until next week when I can afford my 901 and 907's. Going to stop by my eye doc today also. Am staying out of the sun unless covered otherwise, have altered my diet and have covered all my windows to avoid sunlight (also using lower watt bulbs in lamps). Have noticed I now sleep like a baby, on the days I do not go out. Bonita

 
 Re: Dry eyes with sarc.
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-30-04 07:09

Bonita,

It is very important that you do not start taking Benicar until you have the NoIR sunglasses and can stay inside during the day for a few weeks. I suspect that you are going to have some major adjustment symptoms and you will need to be very careful. Here is a link to the new article on sun/lights exposure.

I'm glad you're sleeping better.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution

 
 Re: Dry eyes with sarc.
Author: DJ (---.montanavision.com)
Date:   12-05-04 18:37

Hi all!

I have developed dry eyes and mouth over the last several months, now progressing to debilitating eye pain and accompanying headaches. Eye doctor has prescribed Restasis for the eyes - what is Trevor's opinion of using this immune supressant? This is the only sarc. symptom that is lingering. Would going back to the NoIR glasses help?

I have been 20 mo. on the MP, just finishing a 3 mo. course of Phase III. How long can this portion of the protocol be continued? My MD is reluctant to prescribe the required antibiotics much longer than this unless I can justify it. All tests except sILR2 are in acceptable ranges.

Thanks so much for your help,

DJ

 
 Re: Dry eyes with sarc.
Author: Margo4 (---.dsl.intrex.net)
Date:   12-05-04 18:56

DJ,

There is a relevant discussion at our sister site, marshallprotocol.com:
http://www.marshallprotocol.com/forum27/744.html

Restasis is a form of cyclosporin, an immune suppressant. As such, it is not recommended on the MP.

It is possible that the eye symptoms are Herx. Do they get better if you take a "vacation" from the antibiotics?

Margo

 
 Re: Dry eyes with sarc.
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-05-04 19:05

Hi DJ,

YES, you should be wearing NoIRs since you are still symptomatic. My eyes are not symptomatic anymore but I always wear them outside and when I can't avoid facing a bright window indoors. Not wearing NoIRs can keep your 1,25-D high enough to prevent the immune system from functioning properly.

Phase three lasts as long as you are still getting a Herxheimer response with any of the antibiotic combinations. Why does the Marshall Protocol take so long? will help you understand. Your dry mouth and eye pain suggest significant Herx reaction yet. If you need to ameliorate the reaction, you will find directions here.

Restasis (cyclorsprorine) is an immunosuppressant that will do you more harm than good. You need a functioning immune system to attack the bacteria in your eyes. When they are eliminated, the dry eyes due to your sarc inflammation will clear.

I don't believe you have the latest edition of phase three. I'll send you a copy. Your doctor will want to see it. Blood tests (and sILR2 is important) aren't the only justification for continuing antibiotics. Until you are symptom-free, you won't be disease-free.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution

 
 Re: Dry eyes with sarc.
Author: Dano (---.maintech1.com)
Date:   06-29-06 14:03

I was looking at this thread and noticed the post by Marianna back on 04-29-02. It caught my attention because she said:

"I had dry eyes for years especialy in the evening. Very often I just went to bed very early because I could not watch TV or read a book it hurt to much..."

My dry eyes are primarily at night also. Almost never during the day. Has anyone else experienced this at night time or at rest only???

 
 Re: Dry eyes with sarc.
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-29-06 20:32

Dano,

Dry eyes occur when not enough liquid is produced for tears or when the tears don't have the correct combination of liquid, electrolytes, proteins and cytokines.

The information I've found indicates our eyes produce less liquid for our tears at night. Also, during the day, our eyelids blink to provide even distribution of the protective layer of tears over our eyes, but this action is missing at night.

Consider also the air circulation on you at night. Blowing heating or air conditioning at full speed across your face at night can aggravate dry eyes.

Sarcoid inflammation and damage can reduce tear production. Dry eyes are the most common eye-related sarcoidosis symptom. A good step is to thoroughly lubricate the eyes with artificial tears (available over the counter) when you notice they are dry - and before they are painful - during the day and repeat before going to bed. There are thicker lubricating ointments available if something heavier is needed. As always, discuss any lingering concern, including use of artificial tears or ointments, with your physician.

If you experiement with the right sort of eye protection against light exposure during the day, such as the shades we suggest, I believe you will find they provide some relief.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now

 
 Re: Dry eyes with sarc.
Author: Dano (198.246.22.---)
Date:   08-29-06 14:07

Belinda,
thanks for the suggestions. I've seen several doctors about the dry eyes and tried every eye drop, lubricant and ointment imaginable. They all treat the symptoms. Some better than others, but still just the symptoms, never the cause. Of course none of the doctors have been able to tell me why I have the dry eyes or explain why its only primarily at night at rest. The heat/AC I have considered. Makes no difference. Even tried humidifiers with no change or improvement. I even tried wearing swim goggles one night to prevent evaporation of the tears. Still, no improvement. My last eye doctor put me on Restasis but it actually made the situation worse in that I then started having dry (and this time irritated) eyes all day long, not just at night like usual. I stopped taking the Restasis and things improved back to normal for the daytime but still have the same problems at night/rest. Got a follow up appointment this Thursday with the same doc but not expecting any breakthrough.
regards,
Dano

 
 Re: Dry eyes with sarc.
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-30-06 10:16

Dano,

I believe your frustration is due to the fact that doctors are trying to alleviate the symptom you complain of (dry eye) and not the cause. As we have explained, sarcoidosis/ Th1 inflammation can be the root cause of dry eyes as well as the other symptoms you've mentioned in earlier posts (tingling and numbness in the hands, enlarged lymph nodes, inflammation around the eyes, skin lesions).

Lottie gave you good advice in this thread back in April when she explained the Marshall Protocol would treat Th1 inflammatory diseases. Our expertise is assisting people who are under the care of their own doctors with implementing that treatment.

Regarding palliative treating for dry eyes...
Artificial tears can be useful to help sarcoidosis patients deal with dry eye symptoms, but the preservatives usually added to the bottled tears can irritate sensitive eyes even more. Mostly preservative-free artificial tears come packaged in single-use vials and are more expensive, but may be well worth the relief.

Be sure you drink plenty of fluids and use eye protection