minocin may not stop joint damage in RA

[ablegirl]

Dear All,

I have just come across a mention of Minocycline Therapy for Rheumatoid Arthritis on the NRAS (National Rheumatoid Arthritis Society) website here in the UK. It is the website most people with RA are directed to. This is a fairly new listing, under the heading which drugs are used. There was no mention of Minocycline as a treatment on their website before. Like the recent listing from the American college of Rheumatology of Minocin as a DMARD. Seems like the momentum for Minocin as a treatment cannot be ignored any longer here either.

Professor Gabriel Panayi, prof of Rheumatology Guy’s Hospital London gives his opinion of Minocin as an affective treatment for Rheumatoid Arthritis. He refers to four studies, 1994, Kloppenburg and colleagues, Leiden Holland. 1995 Tilley and colleagues, Detroit, USA. 1997 O’Dell and colleagues, Nebraska, USA and finally 2001 O’Dell and his colleagues. He talks of the favourable results obtained in all four studies. To quote his summarising, he says, there is no doubt that minocycine has a laboratory and clinical effect in rheumatoid arthritis. The question is whether minocycline also has a beneficial effect on the rate of progression of joint damage and on the appearance of new joint damage as seen on x-ray examination. Here the result is not so clear. The effects seen have been small.

It may be concluded, therefore that minocycline is a good drug in terms of symptom relief and joint swelling relief and improvement in laboratory measures of inflammation, but that it has no important effect on joint damage.

I thought that it was the inflammation that caused the joint damage, so if minocycline is lowering inflammation levels surely the amount of joint damage would be reduced. Am I missing something!

What does everyone think?

I have definitely seen an improvement in my own case, less swelling, less pain and reduction in sed rate, crp. This article has me worried.

[Suzanne]

I don’t think they have proven that any drug stops 100% of joint damage. Read the ads for the strongest biologics – ‘may prevent joint damage’, ‘may improve signs and symptoms’. Your physician and you will decide what treatment works the best for you. There are no cures.

Congratulations on the results you have experienced (“less swelling, less pain and reduction in sed rate, crp”). I wish you continued success!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[ablegirl]

Thanks Suzanne and John for your replies.

I know what you mean John about follow the money. I wanted to post the information about the Professors’ comments as I thought it was a step forward that they are now mentioning Minocycline as a treatment on a main stream website. Of course you are both right there are no guarantees against joint damage even from the biologics and of course we are all individual and will all fare differently. I have had RA for 14 years and was doing pretty well. I made a disasterous decision 3 years ago to have some shots of cortisone. At the time my marriage failed and I really wasn’t in a good state of mind. At the time the rheumatologist examined me he said that considering I had had unmedicated RA for so long I had little joint damage. After a six week course of steroids by his recommendation I was bedridden after their withdrawl. Subsequently I have been in a terrible flare for three years but found and started Minocin 5 months ago and am doing really well. Unfortunately I have substained a lot of damage over the last three years which makes be very scared of further damage. You are both right about personal choices but sometimes it can be scary being David up against Goliath.

Isn’t it great we have this resource for supporting each other.

[PhilC]

@ablegirl wrote:

It may be concluded, therefore that minocycline is a good drug in terms of symptom relief and joint swelling relief and improvement in laboratory measures of inflammation, but that it has no important effect on joint damage.

That may very well be true to some extent. However, it seems to me that people making these kinds of statements are ignoring or overlooking an important point: Dr. Brown did not use minocycline as a monotherapy. In other words, he did not use minocycline by itself. He also used NSAIDs like aspirin, ibuprofen, etc., and even low doses of corticosteroids like prednisone.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[sandy]

Hi, I’m not sure anyone will see this from a december 2011 discussion, but I too am worried about joint destruction. The ND’s I go to don’t know enough about this issue to help me, and the RA’s just push the prednisone and all the other drugs whose side effects are pretty scary. I’ve been on mino or doxy and plaquenil fairly consistently but my joints aren’t improving. I have less mobility in my right arm now and my hands are fairly swollen. I think I really need some expert attention to my bones, joints, and muscles. Where does one go? What type of specialist? PaulC said you could use prednisone and ibuprofen etc. but does anyone know a safe dosage for prednisone? I’m on 5mg and my ND said maybe I need 10mg but she’s not experienced in this area, so is 10mg of prednisone safe? I also use 1600mg of ibu, but I got this idea from someone at RB and the ND’s said okay.

hoping for some ideas! San dy

[lynnie_sydney]

Sandy – you dont say how long you’ve been on AP, what diagnosis you have, whether you are seeing an AP doc etc. These details might help people to respond more helpfully. You might consider putting those details into a signature line so you dont have to repeat them as they’ll come up every post. To do this, go to User Control Panel, click on profile then input some details into signature box and submit. You can change details in the same way if you change your regime.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[gordbentley]

The single most powerful tool I have found in my fight has been stress reduction and relaxation exercises. minocycline pushed my treatment to where I needed in order to meet my stress reduction needs. Happily in Remission and no joint damage 🙂 almost two years since symptoms started, no longer on minocycline. just immunocal, probiotics and magnesium oil for which i rub on my chest. Ive heard many people say that stress management is your greatest tool when fighting any of these illnesses

[dianne-sunshinecoast]

hi all, like gordon, i find stress reduction , meditation/relaxation , a great help for me…kind regards ..di.

[gordbentley]

I wish we could like comments like on facebook. I will click like on dianes post. while sometimes a pill is neccessary and considered safer then other pharma tools more traditionally offered, I still think the bigger picture lies within the wellness of mind body and spirit. minocycline i beleive can help the body overcome the affliction but one will never truly win the battle unless they can control there mind. one must come to realize that in order to be truly stress free you must let go of certain feelings that bring on a negative body response… this would be the “fight or flight” response which impacts your immune system negatively, you throw this out of wack on suddenly your body turns against the very foods you eat and the bacteria that lives with you. cut out the offending foods, lower your harmful bacteria load, repair the mind to extinguish the fight or flight response and eventually the problem will resolve so long as the one affected keeps there body in check. 🙂 hope I helped those who are confused.

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