Possible side effects of RA drugs: So now i have... - NRAS

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Possible side effects of RA drugs

Haani06 profile image
8 Replies

So now i have accepted the fact that i suffer from this life long disease... but i m really afraid of its treatment which has not even started yet (waiting for some reports) can anyone tell me what are the possible side effects of the drugs you guys had?? Just want to prepare myself!!

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Haani06 profile image
Haani06
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8 Replies

Hello there

I understand your fear; went through the same thing.

Thing is, everyone is very different went it comes to drugs. For example, I had a hellish time on sulfasalazine, and had to stop asap. Other folks have a different experience with the same drug. Some folks have been well on it for years!

I'm now on leflunomide, and whilst I've had some side effects, they are at least bearable whilst I'm waiting for them to start working.

You might get some side effects, the again you may be lucky and get none ( or fairly few).

I hope whatever you try will suit you well.

SueB profile image
SueB in reply to

Hi Haani

It is scary but remember, for most of us the drugs work and life can return to almost normal. I was diagnosed in 2009. Started on hydroxychloroquine ( no side effects) then 3 months later methotrexate was added. I had some nausea but that was helped by taking folic acid more frequently. Those to drugs have had me in remission for nearly 3 years now. Mtx needs careful monitoring with regular blood tests. I can only tolerate a low dose as my neutrophils tend to drop but it still works for me. NRAS has really helpful leaflets about the drugs.

Hope you soon find the drugs that work for you. Sue

helixhelix profile image
helixhelix

People's response to these drugs are so variable that you'll be worrying for nothing. Especially as many people have no side effects at all!

You might feel a bit groggy for the first few weeks on any of the drugs while your body comes to terms with it, but it's not that common to have serious reactions. Unfortunately some people do, but we are well monitored especially for the side effects that you can't feel like liver problems.

So please don't wish bad reactions on yourself. Better to prepare yourself by resting, eating a proper diet and taking what exercise you can. Personally I think the best protection against side effects is a good metabolism - it certainly worked for me and I have no side effects at all from the three DMARDs I'm on.

Needforname profile image
Needforname

Hi Haani06... I too was nervous about the horrible side effects that some experience with the RA drugs that doctors prescribe. Which is why I seeked out safer options, and how I discovered LDN. Most doctors will not prescribe it or even acknowledge LDN, though from my research it's a much safer option, and equally effective. And instead of suppressing your immune system, it allows it to thrive (which apparently is where the healing comes).

With that said, I've been on LDN for a couple of month now with no relief in pain yet. Though I remain hopeful reading success stories every day in the LDN user groups. If you're not familiar with LDN, consider it as an option. There is a facebook group called LDN Got Endorphines" that will help you with any questions you have. I suggest doing some research first.

Best of luck with your hurdles. I feel your pain.

Leonwp profile image
Leonwp

The wide effects on most of the meds are many and varied in severity. Some people get no effects and others severe, the best source i havd found is the leaflets that come with the meds. I sometimes wonder if the pharma companies throw a blanket list at each med, ive reported symptoms and twice been hospitalised with severe reactions but im afraid its pot luck. Most people have some very mild symptoms of some kind but a lot of the time unless the reaction is very fast its often hard to pin it on the med or the disease. Best of luck. Blessings.

carter57 profile image
carter57

Hi....no point in lying to you, most of the drugs for RA have not wondeful side effects, but also remember that everybody is different in how they react to them.

I really hope you have a good Consultant, because it is his job to make sure that you can cope with what you are given, and if not, then to try something else......

Good luck, and hope you get on ok.

Mandalou profile image
Mandalou

Hi Haani

It's a real journey this inflammatory auto immune lark and I'm afraid you will get heaps of advice both measured and sensible and sadly unwise and risky.

Instead of being scared of the drugs try a mind set of being scared of the dreadful damage rampant untreated disease and inflammation can cause.

Stick to reputable websites like NRAS and Arthritis Uk

I read a wonderful excerpt on here, I wish had kept it and or could find it again. It was from a consultant rheumatology specialist I'm not sure from which country whether UK or USA it doesn't really matter- basically he stated that there was no such thing as mild RA.

I know a lady who's only treatment was steroids years ago before the introduction of the latest treatments ( Biologics as I'm lucky enough to have)

Well you should see the horrendous disability she copes with every day and the operations she has had to endure.

What I am trying to get over is please don't turn your back on orthodox medicine due to fear of side effects.

We might be immuno suppressed but we do still have an immune system and mine is working just fine it's stopping it going into overdrive which was the issue.

Everyone suffers side effects to some degree but ultimately it's worth it to live a relatively normal life which you will out find if you hang around here in that a hell of a lot of us surprisingly do despite difficult journeys with the meds.

Good luck and keep us posted with your next steps.

Very best to you.

Mx

Cat-2 profile image
Cat-2

Hi Haani06, I've had RA since August 2010 and was put on Methotrexate where you have to take folic acid too to counteract any side effects. I was put on Sulfasalaxine a few years ago as well and whilst taking that my blood count was up & down so was stopped. I had to stop taking Methotrexate 6 + months ago as was getting frequent mouth ulcers like monthly and always in the same places which is one side effect but again not everyone gets them. I was changed to Leflunomide in April but was only on for a month as was vomiting a few times which again is a side effect. I'm now on hydroxychloroquine which so far no side effects.

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