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 ?
Hi there.
Wow! That is very brave. If I back track 17yrs I felt pretty much the same. I didn't want to pour these poisons into my system either. I was only 30, working full time with two very small children.
However, as things progressed I realised how important these things were. The lack of mobility and awful pain caused by RA can be awful and I am determined to keep going. I am sat here recovering from one knee replacement and about to go into hospital for the other knee replacing. This has occured even though I have taken the medication, although I wish I had been given Enbrel sooner and perhaps this could have been avoided.
Of course it is your choice I I fully respect your decision, but RA can be all consuming. It's more often than not progressive and chronic in its nature and suddenly you find yourself immobile and in agony. When my flare up was raging last year and my crps were over 150, I could literally feel the damage being done in my body. Remember it doesn't just affect your joints; it can affect your main organs too. The inflammation can be dangerous.
I've taken the view that I have to take these pills and potions. I don't like it at all, but they do help me live my life, work and look after my family (most of the time). I suppose you have to detach yourself from the possible bad effects and live for the good effects. I live for the remissions.
I hope you don't mind me stating this. Of course there will be people with different experiences and herbal remedies and lifestyle changes will say different. I have changed my lifestyle and enjoy a few herbal remedies myself, but for me, the formal medication plan is what keeps me moving.
I completely understand how you feel and I hope that whatever decision you make, or the route you find through this illness, is a good one and you keep as healthy, mobile and happy as you can.
Best wishes.
Hi Pepper, Yes I did this huge mistake for over a year, postponing starting biological treatment because of the side effects after over a decade of being treated for RA and then AS. RA progresses whether you want it or not. Medications do not revert it but merely stop or slow down the process. By not taking these you essentially get along with the disease. I hope that if you give it a chance, you will be treated with more conventional medications with less severe side effects. My advice would be – try and see. Feel if it helps. If it helps, go for it. If not, stop. Listen to your body.Sorry if this is not the answer that you wanted to hear...
Thank-you! I will have a good think.
Maybe as my symptoms are bearable at the momoment, I think I can handle it.
Next week I may be back at the Doc's begging for anything.
Is Embrel better than Mex
I totally hear what you are saying, its one of the hardest tings to come to terms with the thought of taking meds like these for potentially the rest of your life!
I can only speak from my own experience, I was diagnosed with RA at age 30 (im now 39) I chose to take Sulfizalizine which was offered at the time or Methotrexate, I was dead against Metx because of the potential side effects and the fact I was still of child bearing age, and the thought of accidentally getting pegnant while on meth doesn't bare thinking about, plus the constant check ups and blood tests put me off that option too.
I stayed on sulf for 7 years with no problems at all then decided to change meds to antibiotics (minocin) I took this for 18 months and came off all meds 18 months ago and am now medication free!
I have had 2 major flare ups in all those years one at the beginning which got me on the stuff in the first palce and one just before coming of the antibiotics, so ive been lucky in that respect as some people suffer terribly.
I guess what im saying is for me i'd take the meds that are right for you until you get back on track then consider changing or reducing when you can? If you go into this with that in mind it might make the thought of taking these medications a bit easier to bare?, don't beat yourself up. Everyone is different and whats right for one is not always right for another.
Good luck,
Kat x
Thanks Kat
That makes me feel abit more positive
hello i was put on Sulfizalizine i have taken it since last january my blood pressure went so high on this my rumy specialist took me off it and now given me prednisone which i have not yet started taking thatas my choice beccause of side effects no one can tell you what to do must be your choice but take care
carol
It looks like all of the medication you are offered have alot of side effects.
I have started a acid free diet , no wheat, dairy, meat,sugar or coffee and have started taking Krill oil and mineral suplements.
I don't know if it is helping but anything is worth a go
Hi
How much are your joints affected by pain / swelling? How long have you had symptoms?
i was so bad at diagnosis I went with the standard treatment, methotrexate which people are concerned about when they hear it is also used as a chemo drug for cancer( but at much higher 10x dose) Similarly to another post I am now on a biologic drug similar to enbrel plus 2 others! This is because my RA was consistently very active.But it has brought normality to my life again since my diagnosis 18 months ago.There is a list of possible side effects but my need was so great I just bit the bullet and don't regret it. But I understand how you feel as before that I had never needed a dr or been in hospital apart from having babies.
But if the symptoms are a lot milder , as you ve heard from other posts, they may well be controlled by diet, or sulphasalazine .let s hope that s the case but don't be afraid of the meds if it becomes necessary as early diagnosis and aggressive treatment can hold back / slow downdisease activity .
Either way it is a hard thing to come to terms with . Getting informed by reading NRAS website , especially about fatigue and exercise helped me feel less out of control and more able to come to terms with everything.
Your consultant will have done X-rays to see if any changes in your joints and this might help you know if now s the time for more aggressive treatment .
I do wish you all the best as you begin this journey- you ll see everyone s experience is slightly different which is so helpful on this website.
I was diagnosed with Seronegative RA just under a month ago. Though it was what I suspected, it has still come as a bit of a shock and is taking a while to get my head around it.
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.
hello pepper
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
Hi Rowbirdie
I was diagnosed six weeks ago, but I suspected I had RA for about six months.
At the moment only my hands are affected, swollen and very painful.
I haven't been told yet if I am seron pos or neg, I had my first consultation a week ago and she wants to put me on Methotrexate and hydroxychloroquine and treat it aggressively.
I am back again tomorrow for results and to start taking meds, but I think I need abit more time to learn about my illness and side effects before I start on the med trail.
It helps so much talking to people with invaluable experience which talking to your Dr or reading medical books doesn't give you!
Thanks everyone x
I think you'll find that most of us – and I do mean most of us – have balked at the idea of taking these meds. And yet they do do the job.
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...
By the way, your low acid (not acid free I hope, that could be dangerous in itself) 'no wheat, dairy, meat, sugar or coffee' diet certainly won't hurt you, although there is evidence recently that coffee has a lot to offer (stick a pinch of bicarbonate of soda in it to cut its acidity – so my nutritionist told me!).
Krill oil is brill – Krill is brill!
Astaxanthine is the latest supplement of choice. If you are really meat free, good to keep some fish in your diet, tinned sardines for eg.
You weight is important though. A heavy body is very hard on the joints. Losing weight is probably the first thing an RA sufferer should do.
Just sayin'...
Oh.... and there's a theory known as Brown's theroy that six months of antibiotics could eliminate RA altogether.
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.
This is the treatment that I took. You only take the antiotics not with any other meds at the same time.
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
Hi Light
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
Check out this book....
"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
Hi Kat
Did you have to push your rheumy to treat you with minicin or was the treatment offered as a alternative to the norm
Big Brother !!
You must have said something really good!