This is all new to me!: I had some blood tests and... - NRAS

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This is all new to me!

bidzi profile image
8 Replies

I had some blood tests and xrays taken at the hospital last week, The Rheumatologist wanted to start me on Hydroxychloroquine, but my eyesight has deteriorated lately and so he wants me to have an eye test first. He told me that he will start me on this, then progress to meta something. Although my results haven't come back yet, he said the treatment is the same for inflammatory and rheumatoid arthritis, so it doesnt much matter which one I have got. I have looked at the internet and am pretty sure I dont want to take any of these medicines. I have seen that diet can improve if not reverse this illness, has anyone here tried altering their diet? and if so what kind of success have you had?. I have severe feet problems, my hands swell, my elbows, shoulders, knees, all ache. I feel tired most of the time, flu like sometimes, and thought I was just suffering from some kind of depression! but it seems there may be a reason for all these symptoms, although I don't much like what i'm learning about it. Any re-assurance you can give me? thanks

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bidzi
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8 Replies

Hi Welcome to the forum!

I don't think any of us like taking the medication but sometimes there is no other option.

By not taking the meds could cause more damage to the joints which in turn could lead to worse problems later in life. Taking the meds (once they get the right ones) can slow the progress of RA and help with pain & discomfort.

I've been on different drugs for the last few months but still haven't got the right level yet, I'm about to start MTX in a few weeks time, can't say I'm looking forward to it but I don't like not being able to live life as I want to!

Good luck!

maxb profile image
maxb

i was only diagnosed 18 months ago and having to take meds everyday as well as cope with the side effects is awful, i started on methatrexate and it really didnt agree with me so they changed it, im learning its all about trial and error until you find one that suits, but i agree with pauline definitely take them or you could find yourself in a lot worse situation in a few years time. Ive found this site brilliant, you dont have to post on it just reading other peoples blogs helps as i thought i had to cope with this on my own as my family dont really understand but coming on here means you dont have to. Good luck!

Maxine xx

maxb profile image
maxb

Also have a look for your nearest NRAS group and when they meet, you might find it useful just to see what stage different people are at, hope this helps.

xx

Hi both of you - welcome to the site Bidzi. Sorry you've had to find us though. the Meta one will be Methotrexate (MTX) which is the most widely used of all the disease modifying drugs and also apparently the most well-tolerated and most effective. It's my second DMARD and I'm doing okay on it without some of the most unpleasant side effects - although I'm having to go up very slowly (and down again now) because of liver problems.

I've tried most things re diet and I exercise a lot too and just keeping weight down by staying off gluten and dairy, caffeine and sugar. Unfortunately I succumbed to alcohol this week and this probably accounts for the raised liver I feel sure although I didn't drink very much. Ah well you live and you learn and i certainly won't be touching the booze again for a long while now while on the MTX. If you can do as much gentle exercise as you can possibly stretch to I have personally found that the best way of keeping on top of this disease and I try and do about 3 hours a week on the Nintendo Wii Fit and walk the dog everyday. My ESR (infamation marker) is stil up at 50 though and I'm still in low level pain so the doctors haven't yet found the right balance to control the RA for me yet it seems. Thing in rheumatology where I live are so slow!!

Take care and stay on here it's the best place to let off steam for many of us I find. Tilda xx

helixhelix profile image
helixhelix

Hi Bidzi

Looking after yourself through healthy diet & gentle exercise and so on can help people, and lots of us do make efforts to do so and keep the medicines to a minimum. I certainly find it helps me. But they're not a solution. If there was some more gentle way to keep this disease under control without the strong drugs then we'd all be delighted. Unfortunately there isn't so please don't get taken in by some of the stuff that's around - and a lot of it is also about so called cures for osteo-arthritis which is completely different from inflammatory arthritis. I know they sound the same but they are different diseases.

The sooner you can get this disease under control the less you'll risk permanent damage to your joints, and the more likely you are to get to a medically controlled remission. So please listen to the consultant.

But the good news is that chances are that this is the worst time, and once you find the meds that suit you then life will be much better. This is a horrid disease, so sorry you've joined our club, but it is possible to have a good life with RA - just rather different from what you might have had in mind! Polly

bidzi profile image
bidzi

Thank you all for your helpful comments, you are all so friendly. Theres always an upside to everything, and I think this forum is going to be a very useful resourse for me. I will let you know how I get on when my results come back, in the meantime I will read through some of the posts, thanks again xx

bpeal1 profile image
bpeal1

Hello

I think we all get scared about taking these drugs but for me the thought of not taking them is more scary. Uncontrolled disease can cause joint damage.

Give NRAS help line a call and discuss your fears. 0800 2987650

I am sure they will help you put it into perspective.

You might also find this site interesting.

arthritisresearchuk.org/art...

Becky

Welcome it will be just finding the right drug for you, hydroxychloroquine has less side effect potential than some of the other drugs, but eye sight needs to be carefully monitored, Drugs are a necessary evil, diet may help to some degree but cannot reverse rheumatoid arthritis as it is an auto immune disease .

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