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 The material here provides useful background, but much of it is now out-of-date.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


 Main Menu  |  Search  |  Log In   Newer Topic  |  Older Topic 
 ** Alert-if you take Prednisone, you cannot take Cipro
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-14-02 23:38

A study that was published this week says that Fluoroquinolones Plus Corticosteroids Increase Risk of Achilles Tendon Disorders In Those Over 60"

Now don't go thinking that if you are not over 60 this doesn't refer to you, the authors focused on this group because the incidence of the side effect was so high - about 87% - in other words - you are almost certain to have muscle problems if you are over 60, take Cipro or another Fluoroquinolone antibiotic, and take prednisone. If you are younger than 60 you still stand a pretty good chance of having problems, just not as high as 87%

The fluoroquinolone group include Cipro (ciprofloxacin) as well as Tequin (gatifloxacin), Avelox (moxifloxacin), Quixin/Levaquin/Elequin (levofloxacin) and Ocuflox/Floxin (ofloxacin).

Note that there is also some information on muscle weakness due to prednisone itself in the "Why do doctors insist on Prednisone" topic.

No specific problems have been reported with the use of the Tetracycline antibiotics alongside prednisone.


..Trevor..
 
 Re: Alert-if you take Prednisone, avoid Cipro
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-15-02 10:18

Trevor,

Anyone taking prednisone and having muscle problems should know about this review on cortisone myopathy, steroid-induced muscle disease. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8734149&dopt=Abstract. The article says there is no way to detect this problem before symptoms appear, but physical exercise (often a problem for sarc patients) is effective in preventing steroid myopathy. Symptoms of myopathy can be general muscle weakness or muscle wasting. http://www.ninds.nih.gov/health_and_medical/disorders/myopathy.htm

Along the same line, there was an interesting discussion of study results at the convention of the American Thoracic Society. http://www.docguide.com/news/content.nsf/NewsPrint/8525697700573E1885256BC2005FC552. This study indicated anti-inflammatory therapy for asthma did manage symptoms, but masked declining lung functions. The study contradicts the assumption that if symptoms are relieved and patients seem to feel better, then they are getting better.

Don't patients deserve a completely science-based study of the efficacy of corticosteroids for treatment of inflammatory disease, complete with analysis of long-term side effects? Has one ever been done?

Belinda
 
 Re: Alert-if you take Prednisone, you cannot take Cipro
Author: Bill Murray (---.ri.ri.cox.net)
Date:   09-26-02 20:25

Well, another bit of great news to get at the end of a really bad day. Lately, my symptoms have gotten extremely worse. I went to the doctors last friday night and I was told I have a bad ear infection. I was told to take Levaquin. I specifically asked the doctor if it was okay to take this with the Prednisone, just because I know there are a lot of problems with a large variety of medications. As usual, another doctor who doesnt have a clue or just doesnt give a damn. He said, there is absolutely no problem with taking the two of them. Sorry to seem to be in such a bad mood, but I am starting to give up hope with these doctors. I hope everyone feels better and take care everyone. Thank you. Bill Murray.
 
 Re: Alert-if you take Prednisone, you cannot take Cipro
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-26-02 20:51

Bill,
Don't get annoyed at your doctor as much as "The System".

I just checked the Hospital's Database and and it says "Flouroquinolones and Prednisone: concurrent use can give increased risk of tendonitis". But your doctor is probably looking it up in a book

There is also a problem that this side-effect is multi-disciplinary, ie a muscle problem from a pulmonary drug. Too many cooks reviewing the recipe, I guess. It took decades to admit the extent of the osteoporosis problem with steroids, many doctors still don't even know much about that

Ask Doc to try the low-dose Minocycline, instead

..Trevor..
 
 Re: Alert-if you take Prednisone, you cannot take Cipro
Author: Lana (---.twave.net)
Date:   10-17-02 19:21

Trevor, I took a trial of Cipro a little over a month ago and as a result I developed an infection in my gut where I suppose it wiped everything out. My Doc put me on Flagyl, Pepcid and Lotrin but I still can't keep things from going straight through. The pain has alleviated somewhat. Is there a better approach to replacing my "flora"? I've tried yogurt , Lactaid and cannot find Culturelle. Lana
 
 Re: Cipro and gastrointestinal problems
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-18-02 08:21

In case anyone missed it, Lana is talking about the possible gastrointestinal side effect of antibiotics such as Cipro as discussed in this article. The most popular explanation is that antibiotics upset the natrual balance of healthy bacteria in the intestine, needed for normal digestion. The usual remedy is to recover by replacing the healthy bacteria by taking probiotics such as Culturelle, which contain Lactobacillus or Lactobacillus GG.

These probiotics are usually available at a local pharmacy or health food store. Some probiotics are refrigerated, although others can be stored on the shelf. If you still cannot find probiotics locally, I suggest you enter "Lactobacillus" into the search window of any search engine to find online sources.

Belinda
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Deborah (205.247.117.---)
Date:   05-01-03 10:52

Yes Hello to everyone. My name is Deborah I have SARCOIDOSIS IN MY EYE AND MY LUNGS. I HAVE HAD THE PROBLEM ABOUT EIGHT YEARS NOW AND IT'S JUSTING GETTING WORST. THE PREDNISONE HAVE MADE ME GAIN A LOT OF WEIGHT. 110-180LBS. IAM VERY DEPRESS AND NEED A FRIEND TO HELP ANSWER SOME OF MY QUESTION. tHE NEW MEDICATION THAT iAM ON HAS A LOT OF SIDE-EFFECT. HAIR LOST APPETTIE LOST AND KIDNEY FALIUE. IS THEIR ANY ONE OUT THEIR THAT KNOWS WHAT IAM GOING THROUGH. A FRIEND IN NEED. HOW CAN I CONTROL MY WEIGHT GAIN AND FATIGUE. I DON'T HAVE ANY ENERGY AT ALL.
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Mary (---.noos.net)
Date:   05-17-03 03:39

I Live in France and have been treated with cortisone and in the process of tapering down. I was just in the US and happened on a Dr. that agreed completly that predisone helps symtoms but does not heal.

He put me thru a group of exams that measured my hormone levels, thyroid, growth hormone, etc. He feels that if any of these are out of balance they must be corrected as well.

He then gave me an injection of Celestone/Depomedral and then put me on Cipro - flagyl - Diflucan- Valtrex. Its only several weeks and I am feeling fine and just feel better off the prednisone - the puffy face has disappeared already. His recommendation is to do the injection about every 6 weeks.

Now, I have to see my French Dr this week and I am sure he will collapse when he sees what I am doing. He will definitly agree I am sure.

Firstly what is your opinion of the above. While he(US Dr) felt prednisone dangerous - he felt the injected celestrone was more effective and with far less side effects = that already seems to be true.

I know that your preference is Minocin. How do you feel about Cipro and should I consider making that change?

Your site is truly my salvation to understand sarc and I just know whatever, I hated prednisone and you gave me the courage to get this far.

I look forword to your reply and thanks so very much for all your help.
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-17-03 07:29

Mary,
Celestone is Betamethasone, a corticosteroid very much like prednisone, but its injectible form lingers in the body for longer. I used betamethasone for a while (back at the beginning, in 1978). It makes you feel better, but the disease continues to progress. It completely suppresses your adrenals, and, longterm has exactly the same deleterious effects on your body.

Cipro is far more dangerous (and expensive) drug than Minocycline. There are several reasons I advise against its use
1. If you get sick with an opportunistic infection, you don't want the bugs in your body to have developed a resistance to Cipro, it is what the hospital will use, a 'first-line' antibiotic
2. Side effects are unacceptable
3. It is only 1/10 as effective as doxycycline in killing cell dwelling bugs (1/20 as good as minocycline)
4. It is expensive

The French study on Minocycline and Doxycycline in Sarc is in this thread here. Your French Doc should be prepared to give you the best drugs if you print a copy of the full text of that study. Unfortunately it is copyright, and I can't distribute it, but you can get a copy from your local medical library (Take this abstract to the librarian).

..Trevor..
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-17-03 12:40

Mary,

I'm amazed that this doctor in the States took such a 'shotgun' approach to your treatment. He prescribed antibacterial, antiameba, antifungal and antiviral medications. All of which have serious side effects. And he gave you steroids (while telling you he didn't believe in steroids) which will suppress your immune system. That is a very strange way to practice medicine, IMO. Most US doctors are under a great deal of pressure these days not to prescribe antibiotics and not to overtreat.

I hope you will have the opportunity to advise him about the cause of sarcoidosis and the safe medications that can eliminate the Cell Wall Deficient (CWD) bacteria. He sounds like he might be receptive to this information.

It's also unusual for a doctor here to check all your hormones without request. I agree with him that the body is trying to keep all your hormones in balance. Did he check your 1,25-D, which is the most important hormone for a sarcoidosis patient? If your 1,25-D is too high, as is usually the case in sarcoidosis, the other hormones may be off too and the way to correct that is to get the 1,25-D down to proper levels.

I'm glad you're feeling better and have not had any adverse effects from all those drugs. Please keep us informed of your progress.

Best regards,

Meg
 
 Re: Alert-if you take Prednisone, avoid Cipro
Author: Betty (---.228.27.24.cfl.rr.com)
Date:   05-27-03 16:57

I am interested in knowing if CIPRO and Prednizone given to a patient with serious kidney and liver problems (only one kidney, and it functioned at only 30-40%) could result in cardiac arrest and death?
Our 38 year old daughter was prescribed CIPRO for treatment of suspected bronchitis or pneumonia (no tests were done to determine if indeed she had this problem -- it was based on physical exam only). Two days later Prednione was prescribed for cough. Six hours later she died from cardiac arrest. Dr. said he did not know what caused here Sudden and Unexpected Death. I am concerned that perhaps the combination of these two medications contributed to her sudden death. She died May 25, 2002. Never had a fever, only a dry cough. Day she died she was jup and seemed to feel better -- then complained of being very tired, laid down to take a nap -- and in seconds stopped breathing. Any h elp you can give me will be deeply appreciated. I just want to know what happened to cause her death? I need closure -- but without knowing why she died so suddenly, I am unable to cope. Thank you.
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-27-03 20:41

Dear Betty,

Welcome to SarcInfo. I'm so sorry that you lost your daughter in such a tragic way. Did she have sarcoidosis in addition to her other medical problems?

I understand your need to find answers but I am unaware of any studies which connect Cipro/Prednisone with sudden cardiac arrest. Have you done an Internet search?

My 19 yr old nephew died of sudden cardiac arrest 5 yrs ago. A definite cause was never found despite an autopsy. I believe there is a support group for families whose loved ones have died suddenly due to a genetic defect called the long QT syndrome. Perhaps someone there could point you in the right direction to find the answers you need.

Sincerely,

Meg
 
 sarc. and chelation
Author: Colleen (---.kenets01.pa.comcast.net)
Date:   06-08-03 14:17

My father suffers badly from sarc, has been on long term pred, now struggling to get rid of pneumonia. I've heard how chelation can help. 1) torid of the metals (mercury) and 2) to help open up scarred tissue and help improve breathing. Anyone tried this? Have any thots about this?
C-
 
 sarc. and chelation
Author: Colleen (---.kenets01.pa.comcast.net)
Date:   06-08-03 14:47

My father suffers badly from sarc, has been on long term pred, now struggling to get rid of pneumonia. I've heard how chelation can help. 1) to grt rid of the metals (mercury) and 2) to help open up scarred tissue and help improve breathing. Anyone tried this? Have any thots about this?
C-
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: ~Tammy~ (---.cox-internet.com)
Date:   06-08-03 16:19

Hello,

I had a really bad infection and was given Avelox along with pred. Avelox is in the same family as Cipro ( the flouroquinolone family). I had a bad reaction to the antibiotic with a severe rash and my eyes swelling up. I promptly stopped taking it. Does this reaction, as stated in the previous letters above , occur with only Cipro or can it apply to all the "family" drugs also when taken with pred, AND have Sarc.? I had the same reaction to Ocuflox for an eye infection. ( same family)
Thanx!
~Tammy~
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-08-03 16:28

Tammy,
Yes, all the flouroquinolones will act the same way.

But there is another possibility. Cipro and the flouroquinolones possibly have an action on the CWD bacteria. Their action on Rickettsia is about 1/20 the strength of doxycycline (1/20 minocycline) but it is still an effect. So you might also have mild herxheimer complicating the picture.

I don't suggest a sarc patient using this antibiotic family for sarc, as you don't want to build up a resistance to it (if you get pneumonia, this is the first antibiotic Doc will reach for). This is quite apart from its interaction with prednisone.

Only way to tell is to start minocycline and see what "the real deal" feels like...

..Trevor..
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-09-03 07:37

Hi Colleen,

I'm sorry to hear that your father is so ill. His pnuemonia may be an opportunistic infection related to his use of Prednisone. Steroids suppress the immune system and allow germs to grow.

As I understand it, chelation therapy helps rid the body of metals but since metals do not cause or exacerbate sarcoidosis, it would have little value. I am unaware of chelation having any effect on fibrotic lung tissue.

It's good that you are asking these questions. Please read the information on this website so you will have an understanding of what causes sarcoidosis and the treatment that can put it into remission.

Meg
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Mary (---.noos.net)
Date:   06-10-03 12:37

Hi All,

I will keep to this thread as it is my last place while maybe not the best. So from my last above - injection on April 28 of celestone and depo-medrol plus many drugs - I am off them and my French Dr as of last week gave me a prescription for doxycycline (refusing as well to give the injection of the above because of its potential danger) with the agreement that I would start back on Prednisone - I started the doxcycline last Wednesday and have not started the prednisone as yet. I need to make a decision as the injection is now over six weeks ago and just the feeling of coming off steroid is starting, I think - I have some osteoarthritis in my back and everything is hurting so very much(and I know one should not just stop these drugs too quickly)- I have that prescription as well as a prescription for Cortef that the American Dr said that if I could not get the injection - it would at least be better. About 10 mg twice a day. Any thoughts?

I am really between two treatments - I know and I just hope that at least the doxycycline is a step in the right direction.

I had tests at the end of May that showed an ACE level of 21 that started out at 220 in December (of course I have been on steroids) Also, I had the D(1.25) exam and it was 47. Sorry, did not do the other.

So, what to do? I am not feeling very great - Would so love to know it was because something good was happening.

Again, appreciate all of you so very much.

Regards,

Mary
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-10-03 13:35

Mary,
I am sorry you have been put in such a quandry. From the point of view of side effects both Celestone and Prednisone are equivalent because they both act on the body in the same way - shutting down a molecule called "Nuclear Factor kappaB"

Your 1,25-D (at 46 pg/ml) is above normal, indicative of sarc inflammation. As is an ACE of 220 (ACE normally drops during steroid therapy).

Antibiotic therapy does have the distinct disadvantage that the pain gets worse before it gets better. Those of us who are on Benicar (Olmetec in Europe) have found a way to minimize the discomfort and additional inflammation. You didn't mention how much doxycycline you were taking? If Doc prescribed a "normal" dose (100mg bid) then the solution could be to cut that back to a level you can tolerate. Would this be any help?

..Trevor..
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Mary (---.noos.net)
Date:   06-10-03 14:41

Trevor,

I am taking 100mg bid of doxycycline since last Wednesday - Are you saying not to take any steroid at all? Even after the injection of April 28th of Celestone/Depomedrol? Not even a small dose of the Cortef? I am going to listen to you. I don't mind some pain if it leads to something better. By the way, you misunderstood my ACE - it is now 21 - the steroids did bring it down.

I will have to find someone to give me the Olmetec I suppose.

Again thanks.........Mary
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-10-03 14:55

Mary,
The ACE value of 21 is not useful - it is distorted by the steroid - that's why I used the earlier value

100mg bid of doxycycline is a very high dosage for a sarc patient. I would think that most of your current pain is herx resulting from that dosage. Take a look at the dosing tutorial I wrote. It seems that doxycycline and minocycline have essentially-equivalent dosing profiles.

My suggestion would be to stop the doxycycline and then work it up gradually, staying at a level which is comfortable for you. If you take prednisone to control your pain it will suppress the effect of the doxy so you are probably better just to settle on a lower doxy dose. These bugs grow very slowly, and you can break the antibiotic dosage (for days or even weeks, if necessary) to fit in with your lifestyle (birthdays, etc).

It should not be too hard a job to get the Olmetec. take a look at Dr Evelin Lindner's assessment of what Olmetec did for her (the bottom letter on this page). She is affiliated to a research group in social psychology at the Maison des Sciences de l'Homme, Paris, and teaches in the Dept of Medicine at Olso and Trontheim Universities, and Doc might be prepared to rely on that...

..Trevor..
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-11-03 17:50

Reuters news service has a follow-up report today on study results from the Erasmus Medical Center in Rotterdam in the Netherlands indicating patients using quinolones have a higher risk of suffering a ruptured Achilles tendon. The risk is higher in patients taking steroids.
Here are some excerpts from the news story:

In this larger study, researchers "compared antibiotic use among 1367 patients with Achilles tendon rupture and 50,000 people without rupture."

"They found people who currently used quinolones (such as Cipro, Floxin, and Noroxin) were more than four times as likely as non-users to sustain a tendon rupture."

"Quinolone users in their 60s and 70s were about 6 times more likely than non-users to sustain a rupture, and those in their 80s and 90s were about 20-times more likely."

"The risk is highest for elderly people who also use steroid drugs."

"Achilles tendon rupture is a serious orthopedic injury that usually requires surgery to repair. Because pain can be mild at first, such ruptures are frequently misdiagnosed as a sprained ankle. One fairly reliable symptom, however, is the inability to stand on the toes of the affected foot."

The report is published in the August 2003 issue of the Archives of Internal Medicine.

Belinda
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: JC Miller (---.nash01.tn.comcast.net)
Date:   08-12-03 16:48

Trevor,
How long should you be off prednisone before you should take Cipro?
I have been off of prednisone for a few months now but I have also taking Cipro.
I did experience weakness and did sleep a lot.

Thanks,
JC
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-12-03 16:55

JC,
3 days off pred is plenty for it to leave your body.

Cipro doesn't kill the sarc bugs. Have you talked with Doc about trying Doxycycline instead?

Doxcycline and Minocycline are pretty good general purpose antibiotics, and they do kill the sarc bugs.

..Trevor..
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Ruth Beck (---.tukw.qwest.net)
Date:   09-12-04 20:58

Dear Sir,

A friend has contracted staff infection after partial knee replacement surgery, submitted to a course of antibiotic infusions and now is on oral Levaquin.

Tendonitis has set in, and I wonder what can be done. Thank you for info. Also still suffering chills and elevated temperatures. Ruth
 
 Re: ** Alert-if you take Prednisone, you cannot take Cipro
Author: Caroline. (---.dsl.stlsmo.swbell.net)
Date:   09-12-04 23:10

Hi Ruth,
Does your friend have sarcoidosis?
Caroline
 Main Menu   Newer Topic  |  Older Topic 


 Need a Login? Register Here 
 User Login
 User Name:
 Password:
   
 Forgot Your Password?
Enter your email address or user name below and a new password will be sent to the email address associated with your profile.

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

Go to the Sarcoidosis Information Discussion Info Message Board Forum

Sarcoidosis

Privacy Policy -(C)Copyright 2002-2007 by the Autoimmunity Research Foundation   (email webmaster)
All rights reserved - Powered by Linux and Phorum