Bad structural damage to one hand and beginning on the other but normal test scores

[ma73jon]

Hello All,

I am 46 and have had rheumatoid arthritis since I was 38. I have tried methotraxat but this was not effective and also caused a side effect of very severe headaches. My NHS hospital gave me leflunomide instead about five months ago but it is very ineffective. I have severe pain and swelling in one hand most days and have pain and/or tightness/locked feeling in my shoulders and upper back, waist, legs and feet.

I am currently taking leflunomide, sulfasalazine, folic acid, hydroxychloroquine and prednisolone. Apart from the leflunomide which I have been on for about five months, I have taken all the other medications for several years.

When the pain is even worse than usual I am sometimes referred to get a steroid injection. This helps reduce pain for about 2 weeks and then I get the pain back as before.

I was referred to a scan of my hands as I complained that the pain and swelling in my hands caused me difficulties as regards working.

I had this scan on Saturday and the doctor said that the scan showed bad structural damage in the left hand and the beginning of similar damage in the right hand.

A problem is that although I clearly have (as my nurse openly says) very active rheumatoid arthritis even with the medication my DAS 28 score is consistently lower than the threshhold required for getting a biologic medication.

I have heard that this may be because I regularly take prednisolone which may lower the DAS 28 scores. I am reluctant to stop the prednisolone ( in order to get a higher DAS 28 score and qualify for a biologic) as I am worried the pain would get far worse.

Could a scan showing structural damage to my joints be used as evidence of the ineffectiveness of current treatment and enable me to qualify for a biologic?

Does anyone else have any advice for me as I am in pain and very worried about long term structural damage to my joints.

Many thanks for your help.

[Shalf]

Hi, I also have structural damage to hand ( right side) and getting worse.

I wonder if your das test is being done on a day where your joints aren't particularly inflamed. Be sure to inform the Consultant of your worse days and how painful your joints feel. Include fatigue if that affects you.

Of course, das includes many other things but overall it's the information you give to the doctor.

Normal blood tests is not necessarily indicative of controlled RA.

Your disease activity is clearly shown on your scans.

Be persistent. All the best. x

[ma73jon in reply to Shalf]

Many thanks Shalf for this helpful advice

[AgedCrone]

Check that you should still be taking the Folic Acid....you normally only need that when you are on Methotrexate.

[ma73jon in reply to AgedCrone]

hi

they told me to continue to take folic acid .

[AgedCrone in reply to ma73jon]

Was that your Rheumatologist or your GP?

If the latter have a word with your rheumy nurse...the majority of GP’s don’t understand how Leflunomide works

[ma73jon in reply to AgedCrone]

it was nurse

[Troygirl]

All those years receiving RA medications and you are STILL getting damage?

This is why I am so confused on taking the crap.

I have been on MANY high powered biologics for two years and STILL need high doses of prednisone to combat severe pain in both wrists . Seems like nothing in the world of RA drugs is working... only prednisone! Now have Cushingoid from so much prednisone!

What can I do?

I compared a picture of me from last November to this November. I do not even look like myself!! Sickening.

Why does the Doctor keep giving me massive amounts of prednisone knowing the effects it has had on me?

[ma73jon in reply to Troygirl]

horrible !

what can I say ?

wish you feel better ...

[AgedCrone in reply to Troygirl]

Have you discussed pain medication....being on Prednisolone seems a hiding to nothing.......it does control inflammation but does not halt joint damage & the longer people are on it the more difficult it is to get weaned off it.

I know it is a difficult & painful decision and I don’t know how long it takes for it to be irreversible...but definitely have a word with your rheumy nurse.

You say you have taken “many Biologics “ in two years.....how long did you give each one? I found some including the Dmard Mtx took 6 months to work &then I took it very successfully for seven years.

I can’t take Prednisolone.....so I had to tough it out until eventually I found a Biologic that suited me & pretty well controlled my pain.....if you already have Cushing syndrome I’m surprised your rheumy has not suggested anything to help you quit the steroids.

Do call your rheumy nurse.

[Troygirl in reply to AgedCrone]

I don't have a rummy nurse. I see the Dr directly each month. He knows how upset I am about the constant need for this damned prednisone but just keeps saying I am unique. Was on methotrexate and enbrel for almost a year. Had to stop methotrexate because my hair was braking off and thinning in massive amounts. Enbrel just quit working just like that. Then the need for massive amounts of prednisone and the quest for new RA meds began! Nothing was working... even IV Infusion Actmra which my Dr pressured me to try because he said he could guarantee it would be the one!

I would love nothing better to get off this prednisone and am trying so hard to reduce. Cannot seem to get below 10mg or the pain comes back and hurts so much in my wrists and radiates up to both shoulders to the point were they cannot move because they hurt so bad! Plus I have a job and need to be able to go to work.

It also seems he would rather continue giving me all this prednisone instead of maybe a pain pill! You know the darned Opoid Epidemic bullcrap!

I hate it!

[AgedCrone in reply to Troygirl]

Are you in the UK? If you are & attending an NHS Hospital there are rheumatology nurses in all Rheumatology departments-maybe you haven’t been assigned a particular nurse but you should be able to speak to one of them, and you would probably get more time than you get with your rheumatologist to explain that you really would like to get off Pred.

As I said...I can’t take Pred....so I had to manage on different steroids & pain meds. It wasn’t very pleasant but I had no other choice until I found a biologic that suited me. It took a very long time, but when I read of the terrible problems people have if they stay on high doses for a long time- I’m very glad my rheumatologist bothered to keep prescribing drugs that failed and didn’t try to force me to go back onto Prednisolone.

I hope you manage to sort something out pretty soon.

[Troygirl in reply to AgedCrone]

USA.

Maybe I could have never been on prednisone if the damned doctor just gave out a pain pill instead of the nasty prednisone.

You said you were on different "steroids" & pain meds.

Once I get off prednisone I will never be forced to even take 1 mg!

[ma73jon in reply to Troygirl]

I would like to end the prednisone but I'm afraid of a lot of pain...

[ma73jon in reply to AgedCrone]

Thank you AgedCrone .

[oldtimer]

You are in same difficulty as I am. I would have to stop prednisolone, have another DAS score once it had worn off, then another to confirm continuing inflammation.

I'm not at the age where my daily activity in the short term is more important to me than the long term effects, so I don't want to do this. But if I was a lot younger then the added benefit of long term control with a biologic might be worth six months of considerably increased pain.

This rationing business is not funny!

[ma73jon]

oh ...enough pain ...I don't know what I will do ...I am so tired ...

[ma73jon]

Thank you Dspooky it is hard. I will have to think it over but thanks to you and all of you who have replied so far