RA progression: Hi, I have had RA 10 years now, and... - NRAS

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RA progression

Terrysl
Terrysl

Hi,

I have had RA 10 years now, and until just over a year ago have been pretty much Okay. I should mention that during that time I have been on Sulfasalazine.

But since March last year it all started flaring up again and has now spread to my wrist and ankle, both of which are sore and painful, my hands are very painful and swollen, and being a self employed Electrician in my late 50's it is becoming near impossible to carry on working full-time.

I am seeing the Rheumatologist next week and I pretty much know that all he will offer is steroid injections, I am not keen on this simply because of the number of joints affected across both hands, not to mention the other joints.

My GP however, suggested going on a short course of steroid medication. He assured me it would improve things, all be it temporarily. What concerns me is the side affects! Does anyone here have personal experience of taking steroids for RA? and if so what was the effect?

I really don't know what do to, or what to ask for, when I see him next week, it is really starting to get me down.

Thanks

Terry

20 Replies
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Hi terry basically I’ve been on living on strike injection for 18 months there about it does help I’m 52. Years of age it’s not ideal but it gets me by, hope you get sorted ASAP. I don’t have any real issue outwardly with steroid I do t know what they do inwardly, it’s quite depressing not having the disease in control yet but I’m hoping shortly they get me sorted. Must be difficult you been self employed I wish you well.

Terrysl
Terrysl in reply to Vonnie10

Hi Vonnie10, what is a strike injection ? is that the one they inject directly into the joint?

All the best.

Vonnie10
Vonnie10 in reply to Terrysl

Auto correct spelling I mean a steroid injections sorry

I am on mtx but when I get a flare up they put me on steroids but only short time which do s annoy me as I feel great on steroids good luck hope you get sorted soon 👍

Hidden
Hidden in reply to Elswick

All about steroids. nhs.uk/conditions/steroids/

I've had extensive steroid treatment. I now have Osteoporosis because of them. They may make you feel good short term, but they are awful long term.

Hi Terry, I am taking prednisone tablets right now and it does help with my RA but is not meant to be a permanent solution. I don't know about steroid injections but to me that will not stop the progression. Maybe you need to change your rheumatoid medi. Maybe a biologic. Right now I am taking arava, just started 5 days ago. I used to take methotrexate and it worked very well for me until I developed a perforation in my intestine. Good luck

Hi Terry, I am taking prednisone tablets right now and it does help with my RA but is not meant to be a permanent solution. I don't know about steroid injections but to me that will not stop the progression. Maybe you need to change your rheumatoid medi. Maybe a biologic. Right now I am taking arava, just started 5 days ago. I used to take methotrexate and it worked very well for me until I developed a perforation in my intestine. Good luck

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I think a short course of steroids will be good short term relieve for you and will help you continue work - however the rheumatologist might suggest you change long terms meds as if you are flaring on the Sulfasalasine then it might not be working anymore. There's definitely more things you can try to put you in remission so you can carry on working, so don't loose hope :)

I have been flaring and was recently put on a course of steroids because I'm flaring in too many joints to inject. Two days later I was bouncing off the walls with energy and feeling good. Whilst long term there is the risk of osteoporosis, a short course won't be too bad. I think they judge it based on how much steroids you have have within a year and try to limit that. And remember whilst you are swollen and flaring, you are increasing your risk of long term osteoarthritis and joint damage, so the goal should be to get the swelling down.

I hope you get some relief soon! :)

Savannah, thats good to know, thanks. can I ask, how long were you on steroids? Did you gain weight, and did it reduce the swelling and pain?

Pleased it works for you.

Terry

At the moment I’m on. 6 week course and I’m only in my first week. I definitely feel hungry a lot more but trying to avoid weight gain with healthy snacks, wholesome meals and water.

It has reduced my swelling completely and almost all of my pain is gone. It’s also given me an energy boost! I have heard it doesn’t work for everyone though but it’s worth a try until you have a long term medicine plan that works for you. Good luck!

I was just diagnosed with RA at 52 and am on 14mg of Metho and 10 Mg of Prednisone. Has anybody tried smoking weed? Diet? These comments, while appreciated and genuinely welcomed are kind of horrifying. It is a frightful prospect to think there are no other options than Methotrexate and Steroids, man made synthetic drugs. I can't help but think that nature would not be so cruel. There is this program I saw on Amazon Prime that dealt with Inflammation from a different approach. amazon.com/Inflame-Me-Rever... / google.com/search?q=marijua...

Vonnie10
Vonnie10 in reply to FRAIiLT

I’m going to give that a watch because as it goes nothing is working well for me all the dmwards drugs are giving me horrible side effects, I just don’t fancy been stoned how do you get a decent oil based weed without the stones effect in it, wish the nhs would catch up with America they give it for all sorts of illness, but not here and when they finally do can you imagine the gp he or she would be like oh no you ,at get addicted, it’s like hard work.

Hiya Terry. I'm sorry that after such a long time of being well controlled you're now flaring, from March too, that's a long time, as well as noticing new joints being affected. Like you I've been diagnosed 10 years & in that time I've been prescribed 4 DMARDs, hydroxychloroquine, sulfasalazine, leflunomide & methotrexate the only one I remain on. I've also been on steroids for 5 years, albeit low dose.

Can I ask why you're so sure a steroid injection is all that will be offered? Is this what's happened previously? Have you thought to say that you would prefer not to rely on steroids & would he consider looking at other DMARD options, or even double therapy... SSZ taken with another DMARD perhaps? Also, your DAS 28 score is important, particularly with the start of more joint involvement now. That could mean your Rheumy will be minded to look at alternative meds.

My experience of oral steroids has been ok fortunately even though I've been on them 5 years. My bone density has remained in the osteopenia/borderline osteoporosis category which I consider diet (including dairy), supplements & exercise to have been beneficial. I've had no other side effects but that of course doesn't mean you won't, I'd suggest, if oral rather than injections are suggested, you discuss your concerns with your Rheumy. I'm in a similar position with having been on steroids so long, I've asked numerous times to taper off them & I have tried on 2 occasions but I've flared & the inevitable has happened... back onto them I go. At my last appointment my MTX dose was increased & agreed we'd discuss tapering the pred again then, see how I respond to MTX increase first. My previous Consultants only ever used oral steroids as a short term solution, only ever a month's course prescribed at a time to bring down a flare.

I wish you luck at your appointment. I'd explain to your Rheumy as you have here, how the various affected joints are now affecting your work. Maybe that will bring forth more permanent treatment options rather than the short term solution of steroids.

Terrysl
Terrysl in reply to nomoreheels

Hi nomoreheels,

They tried me on hydroxychloroquine, together with the Sulfasalazine, but that had no effect whatsoever. In answering your question, yes the last 2 times I've seen my Rheumatologist, all that was offered were steroid injections into the joint. However, that was 6 Months ago, as I see him twice yearly. But things have worsened since January!

So, at my appointment I shall explore these other treatment options.

Thank you for your help.

Ps, almost forgot. What is a DAS 28 score? I have twice yearly bloods, but nothing on them refers to Das 28!

helixhelix
helixhelix in reply to Terrysl

DAS28 is a scoring system that the docs use to have a consistent way of measuring your disease progress. It's Disease Activity Score, and is a calculation on number of swollen/tender joints, the inflammation levels from your latest blood test, and how you say you feel on a score of 1-10. Ask your rheumy as it's good to keep track yourself.

Personally I would avoid steroids as much as I could, especially at your young age. You've got years & years ahead of you so ask for a better solution. In fact if all they offer is steroids, ask point blank why you are just being offered things to treat symptoms and not something to calm down the underlying disease itself - like Methotrexate or Leflunomide.

nomoreheels
nomoreheels in reply to Terrysl

You're welcome. You potentially have the option of trying either MTX or LEF then, maybe read up on both & write down pertinent bullet point questions then you're well prepared. Helix has explained DAS 28 for you. Good luck next week.

PS If you don't already it might be an idea to ask to be copied in on the report your Rheumy sends to your GP after each of your 6 monthly review appointments. I'm guessing you don't otherwise you'd have heard of the DAS 28 because (if it's performed on you) it would have been referred to & you'd have known about it.

Hi,

I'm on a weekly injection of MTX but when I have flares, I do a short course (8 weeks or so) of Prednisone. It always lowers my inflammation and I don't have side effects. I feel great on 'preddy.' Good luck to you.

I've taken steroids on and off for over 47 years and never had osteoporosis. If you need them, take them.

i was on steroids for abt 13 years after developing PMR and very gradually reducing from 40mg in 1999 down to 7.5mg b abt 2013. 2015 RA struck they were horrified i'd been on pred for so long, that my bones wd melt etc etc. but scans 2015 showd no signs of osteoporosis. the downside in the early years was the greed -up to 16 stone from 11.5 but that reduced as the dose did. i think nowadays they start lower abt 20 mgs then reducing. good luck

Hi again all. Can anyone tell me, does this below refer to inflammation on the blood test result form. ( Plasma C-reactive protein level < 5 mg/L [< 10.0] ) ? Because if it does, I just don't understand how mine is always less than 5, whilst my joints are so inflamed swollen and painful!

Also my last 2 letters from Rheumy to GP make no reference at all to a DAS 28 score, is this an NHS thing ?

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