I'm off to my appointment with the Rheumy nurse tomorrow. I've got quite a list for the poor woman & by tomorrow I'll have all the queries prioritised. What I'm about to ask will be quite a long way down the list but I'm hoping to at least broach the subject. Has anyone ever had their inflammatory arthritis (of any type) treated with antibiotics, especially minocycline?
I take my DMARDs & my NSAIDs etc. and if it comes to it I'd take Biologics & think myself lucky to have them. But I am feeling increasingly conflicted about these drugs and want to see if antibiotics might be a possible alternative for me to at least try.
Really interested in any experiences or thoughts on this subject.
look at the RA warrior site, and links from that, as I think more common in the US than here. She quotes that it's minocycline's anti inflammatory effect that makes the difference not the antibiotic effect. There's a vague bit of sense to it for me, as Sulphasalazine is also an antibiotic, but it's not the antibiotic effect that works on RA (although they don't seem to know precisely why it does work...). But my overwhelming conclusion is that RA is so variable that one or two people could be helped by just about anything, be it extract of henbane collected at full moon or the whizziest modern manufactured whatsit, but there's nothing that will help all of us all of the time..... Px
I read up about this too Luce and learned that the chief drawback is that the minocycline takes about a year or sometimes two years to really work at controlling the RA. This means that you have an even longer period for the RA to run riot and do serious damage than with DMARDs. The suggestion that rheumies who use this method come up with is to prescribe steroids or a DMARD and minocycline so that there is cover until they work but this long period put me off doing further research I admit. Tilda x
Thanks Summer, Polly & Tilda.
I've read that the cheapness of Minocycline may have contributed to it falling into disuse as the drug companies have everything to gain from aggressively promoting more expensive treatments. There were a couple of large studies done on use of Minocycline in the 1990s which found that it could be effective for RA. And yes, I've also heard that some physicians will prescribe it in addition to Mtx.
I think one reason why I'm at least interested is that I experienced the early stages of RA as something very acute & similar to how I thought serious infections manifested themselves.
Additionally it is so true that exactly how DMARDs work in inflammatory arthritis remains a mystery - there seems to me to be a certain level of explanation but it always falters at some point if you keep digging. And perhaps to a certain extent their credentials stem from the frequency with which they are prescribed. That's not to say that they are bad drugs, not at all - and they would seem to be a big improvement on long-term steroid use - but there are some question marks hanging over them.
I really agree that it's hard to know what will or won't help in individual cases so I think the fact that Minocycline is relatively safe (?) would encourage me to at least try it. If I can find someone to prescribe it that is ......
Meanwhile I'm adjusting to the Sulfa pretty well I think so that's another bridge crossed ...
Luce x
IF it helps luce I DID read up extensively on mino cyline and questioned its use as possiblity, I didnt mean to sound dismssive trust me in NHS DRUG BUDGETS cheapness is actually a bonus!!, I didnt get my biologics two years ago, well eighteen months to be precise THIS IS WHY ,I SAT in a pharmacy meeting ..as the director of pharmacy said we must stop the rheumatlogists using these expenive drugs!!!!, at the same meeting it was we are cutting cancer nurses to save money too!
!.I did extensive research as too whIch drugs I COULD have as no enbrel at this point!! and I KNOW WHY ITWASNT given it( drugs budget). my research gave me gold injections which gave me sixteen months od drug induced virtual remission unfortunatelyfor me after eighteen months it stopped working.
In some people biologics stop working after two years as well!
in reply to
Oh I didn't think you were being dismissive at all but thanks for coming back with more info. What was said in that meeting is so worrying, must have made your blood run cold, because if moderate to severe inflammatory arthritis (or 'mild' of course, if necessary) isn't treated with 'expensive drugs' then what can it be treated with? The DMARDs & Biologics are currently where it's at and they are costly.
Your pharmaceutical knowledge is so valuable on here but it must be tough for you constantly getting the inside story.
It is interesting what you say about the gold injections - I haven't heard of anyone other than you having them yet they gave you a good long period of drug induced remission. I'm bunging that on my list of things to ask about!
I am VERY aware of how cost looms over everything in the NHS. I still wonder whether Minocycline has been sidelined unfairly though - could have a limited role, you'd think, especially given its low cost.
Are you still waiting on news of Biologics? I was aware you had some hoops to jump through & hoping to hear good news.
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