9 weeks in to diagnosis... some improvement. - NRAS

NRAS

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9 weeks in to diagnosis... some improvement.

Jules13 profile image
12 Replies

I don't want to jinx myself but for the first time in nine weeks I have woken up without feeling like I have flu. My body doesn't have that dull ache, I don't feel nauseas, the headache is a bit better and I don't feel dizzy.

The debilitating chronic fatigue that has kept me off work for so long also has improved somewhat.

But sadly, the swelling and pain and inflammation in my right hand, fingers, thumb and wrist is as bad as ever. I still can't hold a pencil or a mouse and that is stopping me from doing my graphic design job. I have no money coming in at all.

So does that mean the hydroxychloroquine and sulphasalazine are working? I'm still on quite a high course of steroids but they don't seem to do anything. X

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Jules13 profile image
Jules13
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12 Replies
Anitasmith profile image
Anitasmith

Keep my fingers crossed:) maybe medication working and you can go to back work

helixhelix profile image
helixhelix

I know you're fed up with your limitations right now, but one step at a time.... this is a great sign after only nine weeks. Sadly RA teaches a zen like patience, plus the need to have belief. You may not think the drugs are doing much, but I bet you'd notice if they weren't there.

I remember the excitement the day I could tuck in the bottom sheet on my bed without wincing....previously sausage fingers had got in the way. You'll get there. And I confidently predict that in 4 months time we'll only ever hear from you when you announce a new achievement - climbing Mount Everest, completely redecorating your new house in a weekend, that sort of thing!

Jules13 profile image
Jules13 in reply to helixhelix

I hope not. This place has helped me so much that I would like to contribute even if I'm well.

Weirdly, the pain hasn't subsided that much, only the other horrible things.

AARA profile image
AARA

Hi Jules13,

Delighted to read that some aspects of life are improving. Hope things have "bottomed out" for you and that you continue to improve day by day.

Wishing you well.

AARA

Jules13 profile image
Jules13 in reply to AARA

I just hope I'm not speaking too soon. The pain is still in my hands and wrists but the other stuff has improved so now I just wish the pain and information would get a bit better so I can actually physically work.

nomoreheels profile image
nomoreheels

Your Rheumy probably explained that none of the DMARDs are quick acting, it's usually around the 12 week mark, give or take, before real benefits may be fully noticed though subtle changes such as you're experiencing are often seen before then. We're so used to meds being quick acting it's hard to have to wait I get that but if there's one thing RD teaches us it's to be patient. Also DMARDs aren't pain meds, this is why you've been prescribed steroids, NSAIDs help too, don't know if you've been prescribed one? These work on the inflammation & so reduce pain but helping yourself by using things like hot or cold compresses on your hands or maybe a wax bath, that works well, soothes painful hands.

I know how it is, we have been there, had to be patient when it's the last thing you need, plus you've the added worry of being self employed, but hang in there, it will get better. 😉

stbernhard profile image
stbernhard

I'm chuffed for you. Little steps to greater improvements. Easy to say I know, but we've all been there. Just don't lose hope, you'll get there. All the best.

Ruth12345 profile image
Ruth12345

Sooo pleased for you. Im in 13th month of RD and swellings generally down but still v.tired,achy and in pain.

Keep it up ...well done

Jules13 profile image
Jules13 in reply to Ruth12345

Don't get me wrong. The pain and swelling and pain are still there. What's improved is the chronic fatigue and nausea. So I'm focusing on that because I have to focus on something.

I was also given folic acid and vitamin D on prescription because my levels were so low. Maybe get blood tests for those because they get missed a lot.

Ruth12345 profile image
Ruth12345

Thank you. I take 5mg Folic acid once a week. Was told it was because im on 20 of Methotrexate. Never had blood test for vit D levels so will ask for one. Have blood tests every 3 weeks.

Jules13 profile image
Jules13 in reply to Ruth12345

Yup me too. So again, I'm not sure what is helping... whether the RA medicine is finally kicking in or whether it's the Vitamin D. But I defo have more energy.

Ruth12345 profile image
Ruth12345

Thats great. It makes a difference when there is an improvement. As you say its good to concentrate on improvements. ☺

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