Advice please...

[Elmo333]

I need some advice please- I was diagnosed with seropositive RA nearly 3 years ago. At the time I had had pain the the balls of my feet for about 6 months and occasional severe pain in my hands. I then started MTX injections which helped stop the foot pain completely. However, the last few months have been awful with severe bouts of pain moving around my hands/wrists/shoulders/knees etc. I added sulphasalazine about 3 months ago which isn't helping. It was so bad last weekend that I literally couldn't walk. Thanks to steroids I'm happy as Larry now but I'm having to finish the course tomorrow. I'm really scared about stopping them because I don't want the pain to come back. My GP just says to contact the RA nurse but I don't find her massively helpful. Why am I so much worse now after having been taking medication for 2 years than I was before I started treatment? Is it natural progression of the illness do you think (I know you're not Drs!). Is it worth while popping all these pills if it's just getting worse?! Thanks

[helixhelix]

The drugs can only control and slow the disease, not stop it entirely. For some people it slows down so much that the progression is unnoticeable. For others it only slows it down so far and then you need to add or change drugs. For me it took three drugs to slow it to a snail's pace. And now, 6 years later I can feel it creeping up on me again.

I think your best option is to brave the unhelpful nurse and ask for an urgent meds review as sounds like Sulpha is doing zilch. Do you use anti-inflammatories to help in short term?

[Elmo333 in reply to helixhelix]

Thanks for replying HelixHelix, sometimes it's nice to have someone who understands!

Naproxen helps but it messes up my stomach (even though I take rabeprazole, which is the same as omeprazole) so I only take it every now and again. When I went to a and e last weekend, they gave me a diclofenac injection which worked an absolute treat!! Would it be amazing if steroids weren't harmful?!

Sorry that your drugs seem to be running out of effiency. It's so hard😞

[Gnarli in reply to Elmo333]

Hi Elmo. I'm really sorry to hear you're having such a rotten time. Those NSAIDs do awful things to my stomach too even though I take ranitidine for reflux and lansoprazole. I find paracetamol useful when its not that bad and co-codamol for the more painful times. I was given tramadol but that is a last resort. The world turns very strange with that stuff. That diclofenac shot sounds wonderful but I thought it was another NSAID not a steroid. This nasty disease is a right wiley beggar isn't it? Always trying to find a new way to make life difficult. Sorry to say it but the unhelpful nurse would probably be your best option as she may well have just the med to make your life easier. Worth a go anyway? Big hugs

Jan

[Elmo333 in reply to Gnarli]

Thanks Jan. Yes, diclofenac is an nsaid. I was taking steroids too. I thought it looked confusing when I read it through before posting! It is a very frustrating disease. I've woken up this morning with a bad hip and pain in my shoulder blade, neither of which I've had before! Joy!!

[margarete-72 in reply to Elmo333]

I had naproxin but it did my tummy and kidneys in x

[Gnarli in reply to margarete-72]

I really need that "dislike" button

[margarete-72]

iv never been given any of these I have ostio arthritus and fibro iv Bern on patches ocycoden but I had stopped them I get bad head aches both knees are bad and give way my ankles give way I use a trolly and sticks and a walker I'm waiting to see if il get a new knee having my ankles m r I agsin as had them injected and they are worse I'm in pain I can't take loads meds as I get too many side effects I'm so fed up some days I'm in pain for days x iv had dysphagia and can't swollow I'm getting bad throats all time. under diff hosp but nothing is done except saying it will get better I'm 63 I want to walk about but my knees give way .I wish I was in something different for my psin x

[phil_54]

Hi

I feel just the same as you i am on MTX injections but unlike you i have good days and bad but i wouldnt consider not taking medication as i also dont want to go back there sometimes you do feel like the meds arent doing anything but i try to weigh up how many good days i have compared to the bad and thats what tends to keep me going and one thing i have learned is that all medication engineered to treat RA is pretty potent and will have side affects so its just a case of finding what works best for you

Also this medication can take up to 12 weeks to start working.

Sorry couldnt be more helpful hope it works out for you.

[margarete-72 in reply to phil_54]

that's OK iv had so many different psin tabs and patches but as my kidneys aren't perking fully and I have bad ibs they make them worse but I'm hoping g for a new knee and ankles are being done so that's fine I don't like the bad side effects x glad ur ok xx

[Megs4]

Hi, I only have personal experience and that is nothing compared to the doctors. However, I guess they don't know what it is like to have the diseases they treat. All I can say is that I had suffered those same symptoms for years before I was diagnosed and they were definitely worsening. I had kept myself well and fit all my life so didn't think anything should be going downhill like that. After I was diagnosed and treatment began I had the same success as you. Then it either stopped working or I got worse. Fast forward three years to now and I have been through three types of Dmards and now on biological DMARDS. With success. This is not something that goes away. In my case, it takes more treatment to make me capable of doing less. That is, I have needed to adapt my life to suit what I can do and that is less than healthy people my age. I think it would be worse without the drugs. I did try all natural methods for years to relieve my symptoms before I realised that I actually had RA. In my opinion, you are not being treated aggressively enough. The pills are not working and your symptoms are out of control. After further years, you'll probably look back and see the pattern. Be your own advocate and press for better treatment. Good luck.