I feel so unwell from the medication

[Shanim]

Hi, I was diagnosed 4 years ago with psoriatic arthritis. I have tried Several different drugs hoping to get some kind of relief from the pain, mainly in my hands and feet but until now the only one that I can take is 10mg of leflonamide, every thing else including a biologic that was tried makes me feel very nauseous along with headaches and generally feeling very unwell, at the moment I am taking Sulfasalazine which has made my ears ring and my face very puffy, along with the headaches and nauseousness, I almost feel like the pain from the arthritis is less debilitating than how the toxic drugs make me feel, I feel so depressed that I can’t find anything to suit me, has anybody else had this experience ?

[Hidden]

I had so many problems with Hydroxychloroqine and sulfasalazine. Elerzi ( Biologic) caused me more problems than RA. Now on Baricitinib started in December and working a treat.

[MJSlide1958 in reply to Hidden]

Hi, May I ask whether you are on Baricitnib only? Or are you taking another Med with Baricitnib? Thanks

[Hidden in reply to MJSlide1958]

I’m on MTX as well

[MJSlide1958 in reply to Hidden]

Please may I ask what dose per week? Thanks

[Hidden in reply to MJSlide1958]

15mg

[MJSlide1958 in reply to Hidden]

Nice and low! Good luck

[Hidden in reply to MJSlide1958]

Yes it’s a maintenance dose was on 25

[MJSlide1958 in reply to Hidden]

and probably the correct dose for you too.

[mhlmom]

Yep! Sulphasalazine made me so sick I couldnt swallow and ended up having an emergency endoscopy - my stomach and throat were raw. MTX made me lose loads of hair and I felt washed out all of the time. Hydroxychloroquine caused a reaction in my eyes so I had to immediately stop taking it. I had anaphalaxis with two different types of biologics - scary stuff! Rituximab side effects werent too bad but it didnt work particularly well and then I tried baricitinib (a JAK inhibitor). I felt very nauseous for a few weeks with no appetite and lost a bit of weight - no bad thing - but it did settle. Ive been on it for 4 months now and it has been a complete game changer (I have RA). I know its hard when you are going through it - believe me I do - but keep the lines of communication open with your rheumy team - my specialist nurse was fab! - and keep trying. There are loads of drugs out there. I was in complete despair of ever finding one that worked that I could actually take and, for me, baricitinib was (in my mind) my last ditch saloon before I gave up and accepted disability as I was running out of options. It worked and I feel great now. Good luck and I hope you find the right drug too x

[janmary in reply to mhlmom]

Just struggling with sulph like you - had problems with oral MX, hydroxy and Tofacitinib. Glad you have found your magic bullet - long may it last!

[Klutzy]

Sorry you're having such a tough time. I hope your specialists will find the right combination of meds that help you!

[Deeb1764]

I have done MTX Sulfa Lefluomide then Benepali all made me so ill. I was like you feeling I would never feel better or at least be able to take a drug that did not make feel so awful on top of the RA etc.Now on Olumiant/Baricitnib and starting to feel the edges of pain starting to cool down. Long way to go but at least it is not causing me other issues.

This took 2 years keep pushing for other drugs and explaining how you feel mentally too as it gets to be so draining fighting the pain and the 'can't see a way out'.

[janmary]

Having the same problem as you with sulf. And just wondering if its worth keeping on with it. Have been on MX for years and beginning to wonder if its interaction with that gives me the same problems whenever I take anything else

[mhlmom in reply to janmary]

Once I settled on baricitinib, they told me I could stop taking MTX. It’s one of the few high level drugs that doesn’t need MTX to boost its effects. It’s great not having to inject MTX with all its side effects. I just pop a little pink pill every day and I’m fine. Hang in there. Maybe ask about JAK inhibitors...

[MJSlide1958 in reply to mhlmom]

That is really good news and easy, especially if you don't have to take MTX and regular blood tests.

[mhlmom in reply to MJSlide1958]

I still have 3-monthly bloods.

[MJSlide1958 in reply to mhlmom]

That's not bad, monthly is really inconvenient! Thanks

[StormySeas]

Hi Shanim

I think a lot of us have been in the same place.

When I look back at my RA journey I can see that I just accepted the status quo in the beginning and didn't realise that things could be better.

I know the situation with appointments is worse now because of Covid, but I think medics just rely on the fact that you're OK if you're not constantly going back to say 'I feel terrible, please help'.

I think you've got to get back to your rheumatologist and say how bad things are. I just waited and waited and assumed something would happen. It didn't. Unless you hammer home how ill you feel they won't know. Working out scores out of 10 or 100 for how bad you feel help. Having a diary with bad days marked in red so you can show the rheumatologist 'look, how bad my quality of life has been for the last 3 months'.

I know it takes work, and you probably don't feel like it when you feel awful all the time, but it might help get you out if the present situation.

Good luck X

[Shanim]

Thank you everybody for sharing your experiences, I am going to speak to my rheumy nurse today, she is very nice and I’m sure will understand, i always feel like I am being a nuisance and should persevere, but it sounds like it’s all par for the course. Thanks again

[LoneEra in reply to Shanim]

Never feel like a nuisance. This is your life. And it’s their job to help you! You do have to push for what you need with this disease and let them know what’s working. Good luck and keep us posted x