Newly diagnosed with psoriatic arthritis - any top tips?

SeasideBelle

Hi

I'm 46 and, on reflection, have had this for a very long time. Am feeling strangely relieved as I had been told I had MS but now I think it's not MS.

Whether that should be a relief remains to be seen! I have very painful feet, neck and it takes forever for my hands to wake up in the morning.

Does anyone have any top tips for someone like me?

Many thanks

Seaside

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. Who has diagnosed you with PsA? I have it but mine went unrecognised for a good few years as it is a sero-negative form of an auto-immune arthritis; it wasn't until my skin helpfully obliged with a bout of pustular psoriasis that the medical penny dropped.

What meds have you been prescribed and how long have you been taking them? I am on a triple therapy and have been for some years now, it's not wonderful but I think it's slowed the process of the disease. DD

stickywicket

Hello SeasideBelle and welcome from me too.

I 'm not quite sure what you're looking for in the way of tips. You might find it helpful to browse through our 'Ideas to make life easier' thread near the top of the page and, if you look higher up at the 'publications and resources' button, there's plenty of stuff to get your teeth into. Other than that, just ask away and we'll try to help.

SeasideBelle

Thank you both...I suppose it's common to want to try and control the future and try to work out how the illness will progress...if I've had it for 20 years already (and that's possible) will the progression likely still be slow? I have problems with both feet, both hands and my spine but I've managed so far without medication. I'm finding it hard to get my head around taking medication indefinitely!
I'll have to come back to you with what the meds are called - begins with s...!

Boomer13

Hi SeasideBelle;

I'm sorry to hear you are afflicted with PsA. I am too and had a "possible MS" diagnosis, which was just recently ruled out with a clear MRI. This was a huge relief but I still have lots of neurological symptoms which seem to come and go and have not been clearly diagnosed.

What did you experience that made your doctor think you may have MS?

As far as tips, all I can say is keeping a diary is useful for figuring out what your flare-triggers are, as well as what makes symptoms just generally worse. My worst are stress, exercise and getting overtired but unfortunately, it seems impossible to generalize across people as it affects us all differently.

I have been on triple DMARDS for over a year without huge benefit and am waiting now to start a biologic. I've had joint pain for over nine years and this has progressed to almost all my joints and spine. Diagnosis has been very slow, and was it was a huge relief when I was finally told (partially) what was wrong.

Best of luck, If I can help with anything, just ask!

Anna

dreamdaisy

Right, my best guess is the drug you are taking is called sulphasalazine. It was my first one and it keeps my skin very nearly clear of the psoariasis but has done nothing to slow the progress of the disease to the point where is it isn't a problem. I'm eighteen years in (and many meds on) now and have OA on top of the PsA (thanks to joint damage that caused) plus fibromyalgia. We are all different in how fast or slow things progress but progress they surely will because that is the nature of all arthritis.

One gift that eludes all humankind is the ability to control the future. I began with one affected joint, I now have around forty and far too many have both kinds in them. The heat triggers the PsA, the cold and damp the OA - it's a year-round win-win! The best tip I can give you is to take the meds. DD

stickywicket

There's no saying how quickly or slowly anyone's disease will progress. Mine was a bit stop / start until after my first son was born. I got it under control, stopped meds to have the second and it just galloped away after that until the DMARDS got it back under control. I guess it is scary being on meds for life but the alternative is worse My OA is here because my RA went largely unchecked fir so long. I'd advise everyone to take the meds. (I, too, suspect yours is sulphasalazine.)

barbara12

Hello seaside and welcome to the forum
Sorry I cant offer any help, but I do understand you needing answers this is were I am at the min..and just knowing will make a big difference..I do wish you well with your treatment ..please let us know how you get on...