What next……..

Nette02

Hi, I was diagnosed with PA December 2020. Initially it was a relief to know what was going on with my body and all the issues, as I was starting to feel like a hypochondriac.

I was initially put on methomextrate and suffered various side effects but the one that just would not improve was the severe dizziness. I got a bad bout of covid last summer and had to come off my meds because I was so poorly. Whilst off them I realised how much better I felt without the side effects and the dizziness went almost immediately. As the dizziness made me fall and impossible to drive the consultant took me off it.

I was then put on sulfasalazine in January and am now thinking that the side effects of the methomextrate were kids stuff as the new side effects were much worse. Also, the sulfasalazine had no impact on my skin and it actually got worse. The nausea, dizziness, general sense of feeling unwell and low were awful but the exhaustion was debilitating. I got to such a low point and felt so rough that the consultant advised I come off it.

I have now been off all meds for two months. I don’t miss either meds and the consultant suggests that the next step is a big one and involves injections, so need to have scans and MRI’s to ensure it’s the right move, particularly as she thinks I’m hyper sensitive to medication.

The pain isn’t good but I rarely surrender. The heat is making things worse and theres so much I can’t do, but fight and still try to do! I have a really demanding and stressful job and all I seem to have the time and energy for these days is work. Work is what pays the bills and has to carry on regardless. Honestly, it’s all so upsetting as I’m reading that so many of you are suffering side effects with the injections too and am dreading what’s next………

frogmorton

Hi @Nette02

You have PsA I think Psoriatic Arthritis? it sounds as though you have had a rough time so far with your meds I'm so sorry you have been unlucky so far.

I know what you mean about only finding energy for work unfortunately I am sure that's why many of us end up giving up work when really we don't want to.

I can tell how anxious you are about starting something new and reading that some of us do have side effects on biologics. To be fair there are a lot of positive stories too of people who have found one to be the answer to controlling their condition.

As soon as you know what your consultant is thinking of do let us know and people will tell you how they got on.

My fingers are crossed that this new medication will help you so much ((()))

Take care

Toni xx

jamieA

https://community.versusarthritis.org/discussion/58116/what-next

Hi @Nette02

I was diagnosed with psoriatic arthritis on 30th October 2020 and was first on sulfasalazine, then methotrexate and finally in July 2021 I was put on the self injection adalimumab biosimilar Amgevita. Neither the sulfasalazine nor MTX worked for me and I did have a balance problem when on 20mgs of MTX - though I was also on a host of NSAIDs and pain medications as well. I'm sure the Amgevita has worked very well for me as I've nowhere near the level of pain - I don't take NSAIDs and I think I've only taken painkillers a couple of times in the last 6 months. They did keep me on sulfasalazine and 10mgs MTX as well though and I use capsaicin cream and Ralvo lidocaine patches on my joints.

Nette02

Thank you so much JamieA and Toni for taking the time to respond. I can’t tell you how chuffed I am to know that you guys are out there.

I’ve got a severely disabled mother whose gone through it all (all arthritis based) and I feel like a fraud moaning or talking about my issues, problems and pain. Which is difficult on bad days.

getting the medication is paramount and hearing you’re story JamieA has really helped and given me that glimmer of hope.

Today has been a particularly bad day and my the pain seems to be in my hip quite badly today so feeling incredibly sorry for myself, whist keeping things together at work and trying not to let the cracks show………so logging on and reading you’re messages has helped me beyond belief.

thank you and will read up on Amgevita!

jamieA

Hi @Nette02

I'm no expert in this but what happened with me was that in early July 2021 the rheumatology clinic took a whole host of blood from me - I think 10 phials. Then based on the results of the various blood tests they put me on Amgevita(adalimumab) at the end of July 2021. My rheumatology nurse did say that if it didn't work they had 7 (?) other biologics they could try. Luckily it did work - though I should say that I'm not exactly pain free - but a great deal better than I was.