Posted , 36 users are following.
Hi I am newly diagnosed with RA.
Feeling bulldozed into taking medication with no other options offered.
My instinct says NO! it can't be the only option to poison my body in such a extreme way.
Has anybody else chose not to take the meds? and how do you feel ?
3 likes, 74 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Bells17 pepperpot33
Posted
I'm 36, work and have two kids. I've never been one for popping tablets, and suddenly not only did I have condition, but to combat it, I had to start taking a load of medication and have some steroid injections too. I was quite upset, but I feel lucky that my symptoms haven't been too severe.
However, bearing in mind my age, kids and an active lifestyle, I want to stop this in its tracks if I can, and if that means taking tablets then that's what I'll try.
I have had one steroid injection so far, which did take the edge off. I have just taken my third week of Methotrexate yesterday, and will also start hydroxychloroquine (spelling?!) at the end of this month. I feel a bit sick sometimes after the MTX, and it upset my stomach on 2nd dose, but yesterday I took it and actually have been ok. Its hard when you take them and they make you feel worse than beforehand, but I know this is something I need to do for my long-term health.
Have a good think, but I think as has already been said, you have to give yourself time to get your head around it - I felt it was a lot to take in, then felt ridiculous because it's not really that life changing (at the moment, and who knows in the future!). But it is, and I go in fits and starts of feeling sorry for myself, angry then determined not to be beaten.
Good luck whatever you decide to do.
loulou282 pepperpot33
Posted
its also worth adding to these replies that these drugs who none of us want to take but are forced by the disabling pain and dibilation is that these drugs can take quite a while to actually start working, for me i tried sufasalazine, and hydroxy, both didnt do any thing, it took 7 months for mtx to start working and even now on 22.5 mg it has dampened it down but im still flaring up every 2 weeks. try it and c hun,we all in this together xx
Light pepperpot33
Posted
Keep in mind that each one of us responds differently to these drugs. There is no certainty at all that your body will have serious side effects.... just as long as you follow the rheumy's protocol and keep having your bloods checked, and lead a healthy life.
I spent the first six months experimenting with every alternative under the sun, including 10 sessions of acupuncture.
Nothing touched it.
Another acupuncturist friend confessed (after my 10 sessions!) that the disease RA as such would not respond to acupuncture, though the pain might.
Even my homeopathist confessed that nothing he could offer could afffect RA.
Meanwhile my rheumy sat back and watched and continued to test me.
Then there came a moment when he said that now's the time to start because if I didn't there would be a danger, not just of excrutiaitng pain (which by then there was anyway) but of permanent joint damage and deformity.
Meanwhile i had been on a low-acid, non-dairy, gluten-free diet, supplemented with all sorts of dietary goodies.
I had three friends who had eschewed the drugs and gone alternative – three friends with RA. Two regretted it openly. One, a musician, could no longer play his beloved guitar. The other told me her wrist joints had fused and though you didn't notice it, it was in fact an enormous practical handicap.
The third refused to talk about it with me, but was quite evidently suffering from severe deformities in her hands and feet.
I went for the drugs.
That was almost 10 years ago. So far so good. I am right now in almost complete remission.
I eat a healthy diet, I exercise, I lead a positive creative life and I'm grateful for my rheumy's indulgence when I rather haughtily assured him I would find other ways to get well.
Now there's another thread here somewhere where someone is recommending something called Nutrional Muscle Testing, which, I believe, is connected to what used to be known as kinesiology.
She and others swear by it.
And I'm fully prepared to believe that if one could truly find the perfect individual body-tailored diet, there's a chance a huge amount of pain could be reduced.
This is just my experience.
Experimentation is all!
Good luck to you...
Light
Posted
Chek it out.
(I couldn't bring myself to take six months worth of antibiotics and add more poison to my system so I tried it with colloidal silver, a natural antibiotic. Zilch.)
Each to his own.
Kathryn1111 Light
Posted
I took minicin for 18months and stopped taking it when I had a flare. I've been medication free now for 18 months.
So think it's worked for me but I know that one day I may need to go back on something else? (Hopefully not for a while? Ever even!)
Kat x
pepperpot33 Light
Posted
Thanks! very useful info , as you have tried and tested other options.
I have read about Dr Brown supressing the immune system with low dose anti biotics does make sense !
I will take on board what you have said
Thanks
pepperpot33 Kathryn1111
Posted
Did you have to push your rheumy to treat you with minicin or was the treatment offered as a alternative to the norm
Kathryn1111 pepperpot33
Posted
My Rheumatologist is great luckily so was happy for me to try.
Kat x
Light Kathryn1111
Posted
But you did it for 18 months, that's three times what he recommended.
What made you carry on beyond the six months?
And are you saying you had your flare while on the minicin? – somewhat negating the healing effects would you say?
And so what makes you medication free now?
Do share...
Kathryn1111 Light
Posted
First off let me say I don't claim to be an expert on the subject I can only speak from personal experience.
I don't actually know anyone else who has tried this treatment other than me. It's not offered as far as I'm aware on the NHS as it's not NHS protocol. You seem to know a few people who have tried it and failed judging by your first comment, so it's nice for me to give you a different experience.
I took minocycline for 18months along with a high dose ibuprofen to help with inflammation, as the mino is there to treat the RA like it's an infection so anti-inflammatorys are useful for pain. Its quiet common to take it up to 2 years and it can take 12 months to take effect. It is perfectly safe to do this and no more dangerous than any other RA meds.
I believe my flare was due in part (a big part) to long term stress, anemia and a herx at the same time, also possibly my body's way of saying that's it now I'm done with that it's done it's job? Who really knows but that's my theory?
The main problem with this treatment is that patients often get worse before they get better which is why some may give up?
So since coming off the mino I carried on taking the ibruprofen for a little while as I was kind of scared to not be taking anything but after a few weeks I realized I didn't need that either and was taking it as a security blanket.
So now I'm medication free. I'm not saying that in the future it won't come back and my Rheumatologist is ready if it does, I could also go back on minocycline again as it's not something that decreases on effectiveness.
So whatever the future holds for any off us we all need to find our own path and mine was tetracyclines. Oh and trying to stay stress free and healthy of course!
Kat x
Light Kathryn1111
Posted
I find that very interesting.
Actually, I misrepresented.... I don't actually know anyone who tried Browns. My knowledge of personal RA friends is limited to those mentioned in my earlier post.
But I was for a long time on another (US) health forum where a huge amount of stuff was shared by many people over many years, and there several people mentioned it, though no one appears to have completed it successfully like you as far as I recall.
So this is good news.
And I am keeping your posts aside in case I get another flare and want to try something new. Then I might investigate Scammell's book and bring all the info to my rheumy.
Kathryn1111 pepperpot33
Posted
"The New Arthritis breakthrough" by Henry Scammell it's an updated version of the Brown theory that light was talking about.
If you are in the UK like me the rheumatologist may need a little persuading to go down this route. Mine is very forward thinking luckily and she had heard of it already which helped!
Its another avenue to check out?
good luck,
Kat x
It's
pepperpot33 Kathryn1111
Posted
Had my consultation yesterday and asked about minicin, the response was a flat no !
I guess you had to go private, I have ordered the book which I am looking forward to reading.
Still refusing to take meth, the more I read, the more horrified I feel .
I found out meth is the cheapest ra drug at just 21p a tablet compared to minicin at £1.30 per tab, Interesting !
I will not be making any rash decisions before every stone is unturned even when I know I am a pain in the backside with my endless questions at the clinic.
Take care x
Kathryn1111 pepperpot33
Posted
No I didn't go private I managed to get it on the NHS. My Rheumatologist had heard of this treatment before and luckily had a college who had prescribed it to 2 of his patients in the past, with moderate success (which in doctor speak is quite good!)
Once you have read the book go back armed with all the information and ask again. Its whats known as prescribing "off licence" which they are allowed to do.
I turned up with book in hand and knew what I was talking about, she was happy for me to take it aslong as I was accepting full responsibility for it and any ill effect from it.
My doctor is pleased with the out come herself, but i doubt she has offerd to others as its not on the "protocol list!"
You could always ask to see another consultant if needed.
I wish you the best of luck.....
Kat x
pepperpot33 Kathryn1111
Posted
I will do that and as I haven't got another appointment for 6 weeks it will give me plenty of time to swot up and put my case forward.
And as you said if she won't ask to see someone else!
Thanks again
X
Light pepperpot33
Posted
I'm seeing my rheumy on Saturday – it's his assistant actually – and I'm going to pop the minocycline question just to see how she responds.
Actually, I know this woman. I bet she laughs!
She always laughs whenever I make some strange unconventional suggestion.
I guess it makes a change to have a laughing rheumatologist.
Better than the one in London who always looks as grim as if he'd just had a night on the tiles and now his dog had peed all over him.
Will report back...
pepperpot33 Light
Posted
Great!! we have got nothing to loose.
And even better that you know her, she may agree just so she can have a laugh.
Good luck
Pepper x