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 The material here provides useful background, but much of it is now out-of-date.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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 Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (207.175.253.---)
Date:   04-13-02 19:57

For the last year we have been hearing anecdotal reports that Hydroxychloroquine (Plaquenil) has been effective in treating sarcoidosis. Nobody really seemed to know why. Plaquenil is, after all, an anti-malarial, anti-parasite, drug with only very weak anti-inflammatory properties.

USC Drs Sharma and Adams found, 13 years ago, that low dose hydroxychloroquine resolved Vitamin-D mediated hypercalcaemia in sarcoidosis patients. A later study with Lymphoma patients in 1999 failed to show the same benefit.

So I began searching for studies that might show that Plaquenil was perhaps effective in fighting bacteria, such as are being found with DNA techniques on the 'empty' sarc biopsy slides, and found a bunch of studies. Typical of them is "Treatment of Q fever .. with .. doxycycline and hydroxychloroquine", which reports that a combination of a tetracycline (Doxycycline in this case) with Hydroxychloroquine sulphate (Plaquenil) was very effective in treating a particularly recalcitrant strain of bacteria.

Maybe this is the missing link that ties everything together. We already know:
1. Plaquenil used for sarc with some effectiveness (without Minocyclin)
2. Recent reports of Minocyclin being an effective treatment

Now has anybody heard of a combination of Tetracycline (like Doxycycline or Minocyclin) and Plaquenil being accidentally used in sarc to good effect?

Maybe the antibacterial property is why Plaquenil is showing promise? If so, that knowledge might show us the way to stop progressive sarcoidosis dead in its tracks... and with relatively safe drugs, too...

Does anyone have any more information?

..Trevor..
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: elaine emmi (---.client.attbi.com)
Date:   04-13-02 21:15

Hi Trevor et al,

The funny thing is the first 'treatment' I ever had was Plaquenil! Back in the early 70's when I was going to various docs to see what was up. I had bad headaches (they gave me valium....), couldn't breathe (they gave me horrendous asthma drugs.....) and a rash on my face and chest. And when in the sun I would get hives. A dermatologist gave me Plaquenil (alone, no antibiotics) and I hated taking it as I always felt sick to my stomach. But it didn't seem to make a huge difference and he wasn't telling me it was sarcoid. I didn't hear that word for a couple of more years.

But I would like to know more about the combined drug possibilities.

Elaine
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Carola (---.easynet.co.uk)
Date:   05-13-02 05:00

Trevor

My consultant took me off steroids at my request and put me on Hydroxychloroqine (Plaquenil) about four years ago. The first time I took them they made me feel quite ill and I had to stop taking them for a while. I tried again about 2 months later and felt fine on them. I take 800mg a day.

I can't say that they make me feel alot better, however, the initial "kick" wasn't as good as with the steroids.

Excuse my ignorance here but I though Minocyclin was used to treat things such as acne?
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-13-02 05:20

Minocyclin is a tetracycline antibiotic. Effectively the same actions as tetracycline or doxycycline. It is very effective against the tick-borne bacteria, in fact, the tetracycline group are the only antibiotics that have been efective against them.

And yes, if you read the references in the thread "Minocycline,Tetracyclines cure sarc skin lesions" you will find that 'Acne' is one of the bacteria suspected of causing dermal sarcoid lesions.

On the topic of chloroquine, take a look at the paper "Randomized Trial of Prolonged Chloroquine Therapy in Advanced Pulmonary Sarcoidosis" for more info about chloroquine therapy. It seems to either be a big help or very little help. Maybe that is because you either still have active bacterial organisms or you do not. It is, after all, primarily an anti-microbial. I am sure it is only part of the therapeutic picture, but at least your body is being less harmed by it than if you had remained on prednisone. It has no immunosuppressive effect comparable with prednisone (the 'kick'), but it has very few side effects.

..Trevor..
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Carola (---.easynet.co.uk)
Date:   05-13-02 05:32

Trevor

Thanks for that and I will look at the suggested site for more information, I did have a quick look and decided it needed a good read!

One thing I have noticed - or it maybe my age - my eyesight has worsened slightly, plus, sometimes they just hurt.

I am new to this site and think it is fantastic - please keep up the good work it is much appreciated.

There is so much I want to ask and am unsure whether I should ask in this e-mail or start a new topic - please advise.
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Denise Testa (---.connect.com.au)
Date:   05-13-02 22:16

Hi,
I have been on Plaquenil for about six months now. My doctor started me off on a low dose and gradually built it up. Perhaps this is the way to prevent that sick to the stomach feeling and is something to bear in mind.

Rather than taking 800mg the first time start at 200mg for the first week and built it up so that the body gets used to it.

I have had no ill effects whatsoever and it appears to have helped the sarc also.

I am on 600mg for the next three months and if I stay well he is going to halve the dose.

Denise
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Caroline (---.win.org)
Date:   05-13-02 23:00

Hi Denise!
Can I ask what other medications you have taken and what the results were? Did your doc tell you why he chose plaquenil, and in what ways has it helped your symptoms?

Please keep us updated on how you are doing with this. Sorry to ask so many questions, I just want to learn all I can.
Caroline
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Rose (---.ok.shawcable.net)
Date:   10-02-02 14:02

Hi I have Sarcoidosis:

Please send more info on plaquenil to treat sarcoidosis, am trying prednisone doesnt seem to be working.


thanks Rose
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Denise Testa (---.connect.com.au)
Date:   10-03-02 23:21

Before I was diagnosed with Sarc one of my doctors put me on minoxin every second day for intractable sinus and I did notice some improvement.
Pity he has retired because he'd be happy to put me on it alongside the plaqenil.

I am on 100mg plaquenil a day and have never had any ill effects that I know off.

I must have a strong stomach


Denise
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Donna (205.229.197.---)
Date:   05-30-03 12:47

Hi, My name is Donna. I came to this site on hydroxychloroqine because my mother has recently been diagnosed with lupus and her doctor has put her on it. Her symptoms are hair loss, itchy skin rash and achy joints. Unfortunately, my mother has always had a VERY sensitive stomach and she says she would rather live with the lupus symptoms rather than be sick all the time. She started out on 400 mg a day, then quit taking it entirely, and now she is trying it again but taking only 100 mg a day and still it makes her miserable. I hope I don't sound too stupid but my knowledge on this subject is extremely small. Does anyone know anything about whether this is the best treatment for lupus or have any suggestions as to how she can continue the med and not have so much trouble with her stomach. Thanks.
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-30-03 13:05

Donna,
Plaquenil is an antimalarial with significant risk of side effects, you can read them by clicking here. Its use in Lupus and Sarcoidosis is historic, decades old.

There is an antibiotic which is more effective against the CWD bacteria which drive the inflammation of Lupus and Sarcodiosis. But it needs to be given in a special dosage (described here). It also needs to be combined with therapy by a new type of drug called an Angiotensin Receptor Blocker (read about that here).

Once mom has gotten a good angiotensin blockade in place she will feel a lot better. But as the bugs die they release endotoxin, and she will have to tolerate a bit more suffering due to an effect called "herxheimer".

Anyway, welcome to SarcInfo. Read the tutorials at the top left and right of each page. Work with Doc to run the D metabolite tests so you can assess the extent of your mother's immune disease, and then prescribe the ARBs and Minocycline that she will need to recover.

..Trevor..
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: John (---.oc.oc.cox.net)
Date:   05-30-03 21:41

Hydeoxychloroqine did have a positive effect on me for a while. I was on 400ml per day for just about a year. Had a little trouble getting started at first. Seemed to make me ill after taking it at the start. I was also traveling extensively with major jet lag at the time so not sure if it was that or maybe a little of both. After a month or so I stuck on the everyday dosage and several weeks after that I did have a pronounced increase in energy and a lessening of the fatigue. It definitely had a positive effect, however it did not last. After a few months the symptoms slowly returned to the point that I stopped taking it in March of this year as it did not seem to be doing much good. Aside from the possible damage to the optic nerve (unlikely, low risk at this dose) there did not seem to be many side effects to worry about so it was worth a shot.

The steroids were a total disaster and I would caution anyone against doing that. They did nothing but harm to me. 40mg for 3 months tapered off for 3 more months. Terrible side effects and no relief. Not worth it.

Interesting that you are contemplating the possibility of a combination therapy you mentioned. May be something to it. However, I do not know of any studies on that.

I'm on the ARB's now with my first dose of minoclycline tonight. So far so good.
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Denise (---.connect.com.au)
Date:   06-02-03 21:11

Plaquenil has made a huge difference. My dose was lowered for a few months and the symptoms returned - but not as bad as they had been before planquenil. The doc put the dose back up to what it was originally and I have been fine.

Tried Irbesarten for a few days but it slowed heart rate too much with Verapamil. Will have to wait until verapamil runs out before trying again

Denise

I was on Minocycline for a month but it slowed weight loss too much.
Did help symptoms. Will have to wait till I lose a few more kilos.
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-02-03 21:24

Denise,
Verapamil and Irbesartan are like chalk and cheese. Verapamil is a calcium channel blocker. Irbesartan is an Angiotensin II Receptor Blocker. Please do not expect them to have similar actions, especially in the presence of systemic inflammation. It would be better to phase down the dosages rather than wait for the Verapamil to run out, IMO.

Irbesartan does not slow the heart rate at all, so I guess you are correct in saying it was probably the combination of Irbesartan and Verapamil. Remember to take lots of the Irbesartan (I found 150mg q8h to be reasonably effective).

..Trevor..
ps: Good to hear from you again, Denise. Please keep in touch from time to time...
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: bpeck (---.dialup.mindspring.com)
Date:   06-21-03 20:27

Trevor:

Here are 2 updated abstracts on Hydroxychloroquine (Plaquenil).
Take alook at the second abstract- don't let the title throw you.


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8267026&dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10022456&dopt=Abstract



I also know form researching Lyme, Plaquenil
it will open a cyst (variant form) of the Lyme spirochete in vitro and is suspected of being able to do the same thing in vivo if taken at high enough dosage (I can't find the reference right at the moment - but will post it if you're interested)

I took Plaquinel and Doxy together for Lyme. It was very effective for me.
I ramped up to 600 mg plaq - ramping back down to 400 mg per day with 300 mg Doxy for 20 days.

Has anyone with Sarc used this combo?

Barb
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: bpeck (---.dialup.mindspring.com)
Date:   06-21-03 20:35

Here's the other abstract :

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12102233&dopt=Abstract

Barb
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-21-03 20:47

Barb,
I have been de-emphasizing Plaquenil, partly because it does have much greater risks than either Doxycycline or Minocycline, but mainly because the herx generated by minocycline is already above the level which most Sarcoidosis patients can tolerate, and they clearly don't need the addition of any other anti-microbial until they kill off all the bugs which are susceptible to the tetracycline.

Those of us who have been on Minocycline for upwards of 6 months are progressing nicely towards the cure, and none of us really feels any need for an additional antimicrobial. The herx generated by 200mg Minocycline is still difficult to handle (well, it certainly needs to be managed by using Benicar).

I am also hesitant to suggest the one or two sarc patients who are not getting herx from Minonocycline to try Plaquenil. There is a real danger that unless the type of inflammation is correctly characterized (by D testing) as sarcoid inflammation, that increasing the dose of Th1 suppressant (either Minocycline or Plaquenil) might actually harm them. Th2 is BAD inflammation...

Yes, I know that Docs swear by Plaquenil, but many just don't understand what they are doing. They view it as an anti-calcium pill, which is a dangerous simplification of its anti-microbial actions.

I would not suggest Plaquenil unless Doc had properly characterized the inflammation as Th1, and unless the 1,25-D levels are monitored for possible viral involvement. This is way beyond the current comprehension of the average physician, and/or the average patient.

..Trevor..
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Bill Murray (---.ri.ri.cox.net)
Date:   06-21-03 22:51

Hi everyone. I was put on the Plaquenil for a brief period. Unfortunately, I developed a bad reaction to it. After about 4 days, I started getting a bad rash on my face and arms. SO I guess I'll never really know if this could have helped me. I am very interested though to see if it helps others out as well. Take care all and get well. Bill
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: bpeck (---.dialup.mindspring.com)
Date:   06-22-03 08:13

Trevor:
Oh- OK - I was reading this thread, and I understand most of it was from last year - Plaq. can have nasty side-effects. Makes sense to me.
Thanks for the clarification.
Barb
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Cynthia Blevins (---.om.om.cox.net)
Date:   07-13-03 07:47

I was on Hydroxychloroqine for several years to help with my eye problems and also to help with keeping the nodules at bay. My Dr. had to take me off of this medication because it was affecting the sight in my right eye and I couldn't afford to lose it. I have lost an eye because of this disease and I have to be careful of any meds that I use concerning my eye.

When I first started using this pill I got very ill and had to stop taking it. I waited for several months and started again and didn't have any problems. After about two years I started having problems with my sight and my Dr. had me take an MRI and from those results he thought it was best to stop this treatment, and now I have been off of this treatment for about six months. I have started to have nodules on the skin and one of my Dr's wanted me to have this treatment but I can't take the chance of starting again.

Instead she gave me two ointments for my skin one with steriods and one without and so far they are working. I don't like taking steriods at all because I have lost an eye because of taking them and can't afford to lose the one that I have left. I am legally blind because of the sarcoid and I am not willing to give up too much more

Cynthia Blevins
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-13-03 08:57

Cynthia,

Thanks for the reverse testimonial regarding Plaquenil. Plaquenil is an anti-malarial, anti-parasite drug with only very weak anti-inflammatory properties. It is sometimes useful against sarcoidosis microbes but somewhere under 10% of the time, reportedly.
Plaquenil has significant risk of side effects. You can about read them here.

At the dosage given to sarcoidosis patients, Paquenil can cause loss of eyesight and the FDA recommends frequent checking of a patient's eyes while they are on Plaquenil. I am surprised that your doctor would have taken this chance with your already compromised eyesight.

You are right to be concerned about steroid use, even topical. Your cutaneous nodules are more appropriately treated with minocycline. JAMA has published an article from the Archives of Dermatology that describes the effectiveness of The Use of Tetracycline for the Treatment of Sarcoidosis

Keep reading the information on SarcInfo, especially the F.A.Q.s and patient tutorials and it will become clear to you how you can relieve your symptoms safely.

Meg
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Angela (---.proxy.aol.com)
Date:   08-16-03 07:44

My pulumary specialist has just precribed plaquenil for me. My sarc flared up in June and I had a decrease in lung function to occur. When I come off prednisone my sarc flares up badly. He is trying to reduce the prednisone if the plaquenil works. I am a little afraid, but he did warn me about the side effects, cramping and vision problems.
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: bpeck (---.dialup.mindspring.com)
Date:   08-16-03 08:03

Trevor:

Re-reading your post from 6/21/03 about the the inflammatory pathways (Th1 v Th2).

I understand correctly? If someone does not herx from Mino, (and D tesing was not done to determine TH1 activation) the Th1 may not the activated inflammatory pathyway? It may be Th2?

If so, could you explain why either Plaq or Mino, or an increase in dosage would harm someone who has TH2 activated...

Or am I misunderstanding this completely?

Barb
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-16-03 10:12

Angela,
Plaquenil is an anti-microbial which sometimes kills some of the bugs causing Sarcoidosis. But you need a very high dose, and at these doses there is a serious risk of losing your eyesight (FDA warning says "Irreversible retinal damage has been observed in some patients who had received long-term or high-dosage 4-aminoquinoline therapy for discoid and systemic lupus erythematosus, or rheumatoid arthritis. Retinopathy has been reported to be dose-related")

Many physicians use these high doses in sarcodiosis because the antibiotics doesn't kill the bacteria effectively at the maximum safe concentrations. The details about this are in our latest paper "Antibiotics in Sarcoidosis". Print a copy for Doc, and then ask if you can try Minoccyline/Doxycycline instead. Make sure you read about herxheimer shock before you take ANY antibiotic.

..Trevor..
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-16-03 10:27

Barb,
You said "If someone does not herx from Mino, (and D tesing was not done to determine TH1 activation) the Th1 may not the activated inflammatory pathyway? It may be Th2"

Yes. The D test is pretty good on its own, but in the presence of sarcoid granuloma the 1,25-D may be high enough to "look normal" even with a viral load present. Problem is that the blood stream does not accurately reflect concentrations of the paracrine cytokines or tissue-related hormones.

I am not aware how an antibiotic will harm anyone with a significant Th2 component. I was talking about Benicar, wasn't I? The ARB will partially block the Angiotensin II needed to mount an effective Th1 reaction and the predominant reaction will become Th2. As I said in the Chest letter, a low Th1 (or 1,25-D) has been found in other studies to be a marker for poor prognosis in cancer and AIDS. I would expect a similar situation would arise in fungal diseases.

AFAIK, we have had no-one at SarcInfo at risk of this, although it is the reason that I become so hyper when folks' 1,25-D tests come back at the low end of expected (<37). Clinical loss of Th1 does not start until 1,25-D is less than 10, and, as I said in CHEST, HIV will often cause 1,25-D to go unmeasurable (close to zero). Hep C, and other viral infections, are less aggressive, most of the data for them seems to be in the teens.

I think the best way to fight such a mixed bacterial-viral infection is to use Minocycline to get rid of the bugs causing the Th1 lymphopenia and then let the rejuvenated immune system kill off the viruses. This is apparently safer than trying one of the anti-virals, unless the situation is urgent. This is also what many AIDS activists have found to work best.

This is yet another reason why EVERYBODY NEEDS TO GET THEIR D-METABOLITES measured...

..Trevor..
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   08-16-03 10:29

Angela,

Ask your doctor about taking Benicar 40mg every six to eight hours to help you wean from the Prednisone. Many folks have reported that it is effective for this purpose.

Meg
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Bill Manton (---.proxy.aol.com)
Date:   08-18-03 10:26

Dear Trevor,

Funnily enough, about 18 months ago, before I got properly ill, I was taking Chloroquine/Proguanil as a prophylactic malarial treatment. I stopped the treatment before I should have, because every time I took the Chloroquine I was ill. I was OK with the Proguanil. The symptoms I had were those I now associate with Sarcoid (Dizziness, fatigue etc). Do you think this could have been Herxheimer?
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-18-03 10:38

Bill,
Plaquenil is hydroxychloroquine. Chloroqine is a slightly different chemical. Both are anti-malarials, but both would behave a little differently.

Generally the dosage used in anti-malarial therapy is much lower than that used in Sarcoidosis. As our paper "Antibiotics in Sarcoidosis" explains, even at the highest doses hydroxychloriquine only just manages to kill the CWD.

Either of these compounds might give Herxheimer. I would not be at all surprised. So few doctors consider Herx, even today. I was just reading a page put up by malpractice lawyers talking about the "dangers" of minocycline. Yet every one of those "dangers" seems to me to be a herx symptom. Even the Minocycline-induced-Lupus is really just a case of undiagnosed Lupus brought to the surface by herx (IMO).

Using a variety of data, especially a set of 1,25-D data for 1700 patients from Toronto Hospital, I have figured that undiagnosed immune disease is 3% to 6% of our community. Folks just laugh at me. Such is life, I guess...

..Trevor..
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Scott Smith (---.buf.adelphia.net)
Date:   09-01-03 20:30

Angela:

I have been on a combination of Plaquenil (200mg 2x daily ) and Trental (400mg 3x daily) for over a year now and just returned from visits with my immunologist and opthalmologist last week. My sarc appears to be under control and my eyes are fine (my eye guy has only seen one problem caused by Plaquenil in nearly 30 years of practice).

I was placed on Prednisone initially by my pulmonologist, but was weaned off of it over a four month period by my immunologist. Best thing that happened to me (aside from my initial diagnosis)!

The cautions about Plaquenil are certainly to be heeded, however. I have my eyes checked every 6 months while I am on this regimen (and I expect to be on it for a long, long time). The correct maintenance dosage level is also important, as mentioned in the article that Trevor points out.

I am also taking Vioxx for the joint pain and an ARB (Diovan, 160mg daily), along with my other medications.

Scott S.
Grand Island, NY USA
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Andrew Sereda (24.244.153.---)
Date:   09-13-03 14:44

Hi

If you are going to be taking either chloroquin or hydroxychloroquin please consider supplementation with DHA (docosahexaenoic acid as in fish oil) and the carotenoids lutein and its close relative zeaxanthin to protect the macula of the retina at the back of the eye. Lutein should be considered a vitamin. It is essential for the eyes and is only available in the diet. It cannot be manufactured in our bodies. It is a potent antioxidant and has moleculat structure akin to coenzyme Q10.

Andrew
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Meg (68.190.163.---)
Date:   09-14-03 18:12

Andrew,

Although fish oil is a rich source of beneficial omega-3 oils, including the essential fatty acid-DHA, it is also a good source of vitamin D. For that reason, it is contraindicated for people with sarcoidosis. If DHA is needed while taking the chloroquines (antimalarials), that is another reason to use the safe, effective antibiotics recommended in Trevor's protocol.

Meg
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Andrew Sereda (24.244.153.---)
Date:   09-15-03 20:52

I should have caught that as I posted it. DHA can be obtained in the brand Neuromins. They get the DHA from algae just like fish. Thanks Meg.

Andrew
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: maree (---.proxy.aol.com)
Date:   01-09-04 17:39

my serum ace level is 66, my calcuim 9.6 my doctor who is a professor wants me to commence Hydroxychloroquine 400mg/day.I have calcaified lymphs and granulomas both lungs and airways. My blowout capacity is down but I have no symtoms except a persistant cough. Should I heed his advice or wait and see if my levels become more normal as they have done before when I went into remission on my own without drugs. It is believed that my serum ace level increased due to stress as a result of a car accident that I was involved in. Appreciate comments
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-09-04 20:23

Hi Maree,

Welcome to SarcInfo. There are many accounts of patients who thought they were in remission but who realized later that they actually had unrecognized symptoms of sarcoidosis. Check the Hypervitiminosis-D symptoms in the Patient tutorials to see if you have any you weren't aware could be sarcoidosis.

Your persistant cough is more serious than you realize. And your decreased lung capacity and the physical findings indicate that your sarcoidosis should be treated asap. The bacteria are multiplying and causing damage to your body even if you don't recognize it.

I disagree with your doctor's planned treatment, however. Trevor has this to say about it: "Hydroxychloroquine is Plaquenil, an anti-malarial, anti-parasite drug with only very weak anti-inflammatory properties. Its use in Lupus and Sarcoidosis is historic, decades old. There are many anecdotal reports that Plaquenil has been effective in treating sarcoidosis. But nobody really seems to know why. It is sometimes useful against sarcoidosis microbes, somewhere under 10% of the time, reportedly. As for why doctors might think it is superior - you would have to ask them. I think you will find that most will not even admit to it being an antimicrobial. According to pulmonology folklore it is supposed to have some (unidentified) magic compound in it that suppresses the immune system.

The flouroquinolones are not terribly effective against mycobacteria. See for example the rickettsia susceptibilities study at this link. The full text shows the flouroquinolones are 1/20 as effective against the rickettsia as doxycycline.

Plaquenil has significant risk of side effects, you can about read them here. At the dosage given to sarc patients, it can cause loss of eyesight, and the FDA recommends frequent checking of a patient's eyes while they are on Plaquenil.

Any antimicrobial/antibiotic that has has some effect in Sarc is worth trying - it is just that I would try some of the less drastic than Placquenil antibiotics first. There are several that are much safer. You will note that the FDA gives the same advice - try other drugs first... "

Serum ACE is an unreliable test to prove sarcoidosis because it is normal in over 40% of sarcoidosis patients. It is not affected by stress but can go up when sarcoidosis flares.

Please read the Patient Tutorials in the upper left corner of this page. They will answer many of your questions. Then print out the Papers for Physicians for your doctor and ask him/her to help you get better with the Marshall protocol.

Meg
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Jackie (---.dsl.rcsntx.swbell.net)
Date:   01-28-04 16:25

About plaquenil. I've been taking it for close to 2 years and I take prednisone. Is that a bad thing? My Rheumatologist originally prescribed it because i was developing systems of RA but the test to show positive. It seemed to help with the stiffness but I've noticed the past 2 months the joint pain is back a little. Anyway, I guess the main question is do doctors normally take both. Each time I've tried to come off prednisone, I've started coughing and the granulomas in my lungs grow. I've been on 5mg for a year and now i'm coming down 1mg every 2weeks. I'm at 3mg now so I will see how it works.
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-28-04 20:22

Jackie,

Since you are taking these drugs to recover from sarcoidosis, perhaps you should be asking whether this is a good thing. Is it working for you? You can easily look up and read about the potential side effects of these drugs, but it seems what matters is whether you are getting the expected benefits of this therapy in exchange for the risks.

Sarcoidosis symptoms may seem to mimic many rheumatic diseases, especially since the rheumatic diseases are more commonly encountered than sarcoidosis. As you have already read, "relapse is much more common after corticosteroid-induced remission."

You may want to see if simply controlling all sources of vitamin D will help alleviate the symptoms of elevated 1,25-D that are found in sarcoidosis. That helped me some, but implementing the full protocol of Benicar and antibiotics was ultimately what brought me the most relief.

I hope you will spend all the time you need here and ask questions any time you need help.

Best wishes,
Belinda
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Shirl (167.102.229.---)
Date:   02-14-05 10:42

My doctor gave me prescription for Plaquenil 6 months ago, I am afriad to take it. What info can you offer me that this really helps Sarcoidosis? Are you aware of a support group?
 
 Re: Hydroxychloroqine (Plaquenil) kills bacteria
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-14-05 21:48

Hi Shirl,

Welcome to SarcInfo. You have good reason to fear taking Plaquenil.

There are no studies demonstrating the efficacy of Plaquenil. Doctors prescribe it because they think it suppresses the immune system in some unknown way. But suppressing the immune system is contraindicated in bacterial diseases. And sarcidosis is caused by tinier-than-viruses, Cell Wall Deficient bacteria that have parasitized the cells of the immune system.

If you read through the messages on this thread you will see that Plaquinil is actually a weak antimicrobial. But we don't use it on the Marshall Protocol because of its serious side effects.

Dr. Marshall said,

"My position on the safety of Plaquenil to treat these chronic Th1 diseases is primarily based on a "relative risk" doctrine. I know that COMPLETE recovery from these diseases is possible, and that it can be achieved with common antibiotics and an ARB blocker which have extremely good safety profiles, certainly they have significantly better safety profiles than the literature reports for Plaquenil in Lupus and Sarcoidosis."

This website focuses on how to use the Marshall Protocol to recover from sarcoidosis. If you want emotional support only, there are other sarcoidosis websites that serve that need.

Please let us know if you have any questions about recovering from sarcoidosis with 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
.

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
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Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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