[Rene]

HELLO EVERYONE!! Ok I read a book that says that people with RA, LUPUS and other autoImmune diseases can actually go into remission by taking the antibiotic tetricycline/minocyline. The doctor in this book says that it works. It is not a cure but can bring on remission and he said it safe because it is different from other antibiotics and does not cause the normal response of taking antibiotics to long,which is resistances to infections. Have any of you ever heard about this? I was just floored when I read this and will be asking my Rhemy!!! I just had to ask you all. THanks!

 

[Clare.T]

Yes this is a perennial and very dubious. Minocycline can cause clinical lupus or drug induced lupus like disease. The theory is that RA is caused by microplasmic infection and if you can get rid of that you will be 'cured'.

As far as lupus is concerned there are many possible triggers from what is already known not only viral infections. Also regardless of what caused the lupus, the disease process can't be simply reversed except maybe by stem cell transplant

RA is not the same as lupus either so a person whose lupus doesn't have a major arthritis component could be taking a serious risk by neglecting to get the right treatment at the right time.

There's very vocal group advocating it fervently but I'd be surprised if you find any reputable lupologists thinking it has any merit.

I read somewhere that it might seem to work because antibiotics reduce inflammation , but relief is only temporary and of course there are all the risks of taking long term antibiotics.

There are several threads about this - one is
http://www.thelupussite.com/forum/index.ph...ibiotic+therapy

You will find others by using the site's search function

Take care !
Clare

 

[twinburl]

I am very aware of the book you are talking about and know people who have tried it. I tried it for about 6 months. I was first diagnosed with sjogren's syndrome. I talked to my rheumy about using minocycline and he agreed, said that he had 10 patients with RA using it and doing very well. I tried it and to be honest I don't think it helped me much. I do have a good friend that has scleraderma who was very very sick. She went to see my doc and he really didn't give her much of a chance. He whole body was getting very tight. She had alot going on I tell you and to look at her now (2yrs later) she really doesn't look sick at all except for her hands. I am telling you this because she found a doc that put her on 100 mg minocycline 2x's per day and she did get better. Now was she going to get better on her own anyway? I don't know, but I do know that she is much better today and just takes 50mgs per day and will for the rest of her life.

Minocycline and lupus, kind of scares me. You know they say that if you start taking it and your symptoms get worse (I believe they call this a herx) that you are on the right track. Well that did happen to me, not long after I started taking it I felt so much worse, then I would get better then I would up my dose and get worse againg. Now was that a herx or was the meds making my lupus worse? I didn't know that for sure so I decided to stop taking it.

Take Care
Terri

 

[raggedyann1]

twinburl,

I am glad to hear it helped your friend with Scleroderma. The research trial on Scleroderma patients came back a definite NO on making a difference. That is rare with Scleroderma because it will progress only so far with some patients and then the skin will start to soften again so researchers are never completely sure that a treatment will work unless they get a very positive result over many patients. They still don't know why some sclero patients have the turnaround of the disease when most don't.

karen

 

[GottaLuvMnMs]

When I am on steroids any length of time I get Rosacea or something like that....and Im put on tetricycline. I guess its a common thing to get when on steroids my derm doc said. I then get the yeast infection which is very common with these antibiotics so take the pill to stop that.....Good luck, hope it works for you.

 

[Rene]

QUOTE(GottaLuvMnMs @ Jan 3 2006, 06:48 PM) [post=388975]Quoted post[/post]

When I am on steroids any length of time I get Rosacea or something like that....and Im put on tetricycline. I guess its a common thing to get when on steroids my derm doc said. I then get the yeast infection which is very common with these antibiotics so take the pill to stop that.....Good luck, hope it works for you.
[/b][/quote]


I am taking steriods,have been for over four years. Low dose most of the time and then high dose on and off. I have Rosacea or a red face with broken capillaries all the time. I also have gotten them much worse on my legs

Does the tetricyclin help with your red face?? Do you have lupus?? I need to see a Dermatologist,but just haven't. My Rhemy said all is because of steriods

THanks!

 

[f5kansas]

MIL -- far more than 52 confirmed cases

I would strongly advise everyone to avoid Minocin with Lupus. 18 months of 100 mg Minocycline caused over a year of SLE symptoms (confirmed by the 5 positive indicators). After taking a steroid and plaqunil (and staying far away from minocin), the symptoms vanished. I've felt incredible and all tests are normal. I've heard similar stories from tons of people.

I would talk to your rheumologist first, but be extremely careful with minocin.

 

[Raglet]

I take doxycycline which helps with my fatigue, but has never put me into remission. If you take antibiotics long term your body does adjust to them, and I don't have a problem with yeast infections. Before I was on doxy long term I got yeast infections everytime I went on to antibiotics.

My rheumie says that people with lupus shouldn't take minocycline as it can cause drug induced lupus. Actually my rheumie did not put me on it, my GP did as it is what I usually take for sinus infections, and I really noticed that it helped with my lupus fatigue (above and beyond recovering from the sinusitis).

hth

raglet

 

[Clare.T]

Welcome to the forum f5kansas

I am glad to hear you have recovered from the minocycline induced lupus.

The general recommendation for people with lupus is to avoid minocycline because it can provoke flares. The other tetracyclines seem better tolerated but they increase photosensitivity, like many other drugs, so for people predisposed that could be the last straw. I am pretty sure that the information leaflet warns against taking it if you have lupus already.
We do have to keep our eyes out when doctors are prescribing. A GP recently was just about to prescribe me a 'sulfa' antibiotic. I'd probably have forgotten about it except I could see the PX options on the PC screen.


Unfortunately there is no way to tell beforehand who is going to react to Minocycline by developing lupus. It is supposed to be useful therapy for RA and is used in individual cases. Sometimes there isn't much choice but to take a medicine that can aggravate lupus such as the TB medicines
I had IV doxycycline for Lyme disease without any lupus problems.

Keep well

Clare

 

[Jesse88]

This thread is just the kind of information I am looking for. I also just finished "The Road Back" which discusses the merits of AP (antibiotic protocol) and was all set to try it but my RD flipped out. He said it's dangerous for someone like me with neurological symptoms and the data just doesn't support AP. But there are many people who have done well on it so I'm also wondering, like Renee. At least now I know I'd have to avoid minocycline. That's important information.

 

[Clare.T]

Hello Jesse

There has to be some good reason why a medicine or therapy isn't used by lupus specialists for treating lupus.
Lupus is not the same as RA. Some drugs are used in lupus when there is a very strong RA component.
When people with a lupus diagnosis say AB therapy has helped them we have no way of telling exactly what their lupus is like. As you know it is very variable in its effects & each person is affected a bit differently.

The sulfonamide antibiotics are best avoided as they often cause disease flares. Others may cause skin reactions. Amoxycillin is often used in lupus patients.

Cheers
Clare

 

[Jesse88]

Thanks Clare. This is important information Renee, I and anyone researching AP can use.

 

[KarolH]

Funny how folks are all different and some things that work for you may not for me.

For example...When the doctor thought I had Lyme disease they put me on doxycycline and when I tell you I became so ill and pain raged through my body I am not exaggerating even a little.

I literally could not walk, sleep, eat or even function. I did not have the dx of Lupus when this happened but I wonder now if the doxy flared the Lupus???

One will never know but I bet my boots on it.:wink2:

 

[Jesse88]

Karol, I think the AP people would call what happened to you a "herx" which means the symptoms get worse before they get better because when the infectious cell is being destroyed by the antibiotic, it gives off some sort of toxin as it's dying and that's why you feel worse at first. Whether that's all true, I just don't know. This is all just too confusing for me!

 

[KarolH]

Karol, I think the AP people would call what happened to you a "herx" which means the symptoms get worse before they get better because when the infectious cell is being destroyed by the antibiotic, it gives off some sort of toxin as it's dying and that's why you feel worse at first. Whether that's all true, I just don't know. This is all just too confusing for me!

Jesse your right, it is called a herx but that was not the case with me because with further testing they found out that in fact I did not have Lyme disease so it must have been from the Lupus, IMHO.

 

[Clare.T]

I contracted Lyme disease, which is of course infectious unlike lupus, and took doxycycline without any ill effects, it just did its job & got rid of the Bb antibodies and stopped full blown Lyme developing.
If you believe that lupus as well as RA is due to these infectious thingies whose name I forget, then it makes sense to use an antibiotic. None of the well known lupus specialists accepts the Road Back theory. I think it's only available privately in the USA and not at all in the UK. Some of the statements made in some Road Back literature about lupus treatment are in my opinion very misleading and unnecessarily scare mongering. I can't imagine why they need to promote antibiotic therapy in these terms.

Anyway, to get back to the topic. In one study of 250 drug reactions in SLE patients ranging from worsening lupus to skin reactions, 30 were to sulfa drugs, 25 to penicillin, 20 to cephalosporins 19 to tetracyclines 18 to erythromycin. This was 57% of 340 SLE patients compared with 14% of 303 chronic arthritis patients in that clinic. ( Dubois' SLE Ed Dr Wallace )
It seems to me that Minocin is the tetracycline the most often implicated, but there are times when we have to take drugs that risk worsening our lupus or run the risk of even worse still on top of the lupus
Quite a few people take doxycycline regularly on doctor's orders, like Raglet, but it isn't for treating the lupus per se.

Cheers
Clare

 

[KarolH]

If the "Road Back Theory" means reversing a disease process than I do not personally believe that is possible. Gosh if it were then none of us would be sick.

 

[mtyaphrdti]

I've got to agree a little here about fooling around with meds. I found out I had lupus after 8 long months of being treated for a dx of rosacea. I was on minocyclin and later tetracyclin. I truely think that the rxs led to my prolonged problems with rashes and fatigue that I'm still experiencing 1 month into a lupus dx and discontinuation of those rx and beginning plaquenil (which STILL is making me sick after over 2 weeks)

 

[Jesse88]

Thank you all. It's good to get your feedback. And Clare, you are a wealth of information on this subject. I struggled with whether to try AP when I was still dx'd UCTD. I guess the lupus dx makes a difference. Since I'm also deaf in one ear, I was trying to figure out which of the AP drugs would not threaten my hearing ear. I understand there is that problem as well with some of the AP drugs. I was desperate to get off of the MTX because of side effects and thought the only way to go was to try and minimize my need for it by trying AP. Now that I'll be starting Imuran instead of the MTX, I'm hopeful I won't have the same problems.

 

[Jesse88]

mty: Are you taking the Plaquenil with food? I find that very helpful.