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Diagnosed Psoriatic Arthritis yesterday.

Posted , 14 users are following.

n58541
n58541

Hi,

After 3-4 years, and a fight to get an appointment with Rheumatology, finally I have a diagnosis. Part pleased, part feel relieved, part feels overwhlemed and part feels particularly low, physically, but also the prospect of the future. 

I have been given a prescription for Sulfasalzine. I am more in favour of holistic, but agreed to take the script, have some thinking time and make a decision before my next appountment with the nurse in a couple of weeks.

I am not happy of it's side affects, can anyone shed any further light? I appreciate it may affect people in different ways. Ideally I would rather not take. But since this diagnosis, it is almost like my mind and body said 'you can let go now and just 'be' it is real,' which has in turn shown me how much discomfort and pain I am actually in. In alot of circumstances I try and be positive and use mind over matter.

Also, will this medication help with the actually psoriasis on scalp, feet, nails?

Cheers!

0 likes, 29 replies

29 Replies

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  • andrew03448
    andrew03448 n58541

    Posted

    Hi don't no much bout the meds but hope goes well for you

    • n58541
      n58541 andrew03448

      Posted

      Worked backwards in replies Andrew, but thanks 👌

  • Okapis
    Okapis n58541

    Edited

    Hi...yes diagnosis can be tricky. Its essentially a diagnosis through eliminating everything else and does need a Rheumotologist with expereince. Little confused though that you've fought for a diagnosis and then are a bit iffy about the drugs?

    Best practice for PA is early treatment..well after 3/4 years of trying to see a rheumotologist...not early! But treatment with relatively aggressive drugs is the best way of acheiving a good quality of life outcome.

    How old are you? And which joints are affected currently? PA is a chronic and progressive disease for many, altho that said it can lurk in minor form for many years in some people as in my case. It then took off with a vengeance.

    Let me assure you that alternative medicine does not touch this disease. I have experienced many who tried this route on the late and lamented Psoriasis Help Organisation (PHO) discussion forum who bitterly regretted the time lost (and money) in pursuing treatment not backed up by verfiied scientific evidence.

    What it comes down to is a trade off between Quality of Life and fear of / and sometimes experience of side effects. DMARDS (Disease Modifying Anti Rhuematic Drugs? think thats right) can take the body some time to get used to.

    In the case of Methotrexate the dose is normally started low and raised bit by bit over time until it is clear progression of PA is halted. Sulfasalazine is often combined with methotrexate. Sulfasalazine will probaly turn your pee orange! The body is a remarkable organism and copes extremely well over time so persevere. Regular blood tests will make sure your body stays on the straight and narrow but with infammation rates dropping 

    Your positive attitude is great, and yes coming to terms with the diagnosis can be tricky. A matter of head round the PA rather than the other way round. I still remember the moment when I came through the "fog"  of diagnosis.

    It has to be said though that we are all very different in the way we react to the drugs and many of us have undertaken a long journey trying with the rheumotologist to find the most effective drugs. I thought of myself as my own personal guinea pig.. I have moved through many drugs to biological therapy and am now on my 2nd biological Cimzia as etanercept (Enbrel) did stop inflammation of the jaw.

    Looking back I'm glad that I pursued the guinea pig path. There were "bumps" buut I'm more active with a better quality of  life than I would otherwise have. Swollen finger joints appeared when I was 29 and I'm now 67.

    I'm sure the fog will clear for you

    • Okapis
      Okapis

      Posted

      Oh dear just read the above back. Apologies for the spelling mistakes! A spell checker would come in handy forum adminstrators or am I  failing to recognise it.

      Have a look at the excellent information on PA on the Arthritis Reseach UK site and keep using this forum. It really helps to discuss with others and read about other peoples experiences. There's also a Facebook page but its not moderated and can get a bit zany. 

    • andrew03448
      andrew03448 Okapis

      Edited

      I'm 46 and got a fast response diagnosed with in a 3 months and got first appointment with rhymatolgy in a months time

    • n58541
      n58541 andrew03448

      Posted

      Wow! That's amazing as in time terms Andrew!

      I think possibly in my circs, the bloods kept coming back negative, partic for RA, & despite physical complaints, x-rays & mri weren't showing much. But feeling thankful I finally got there 😊

      Thanks for replying 👍

    • n58541
      n58541 Okapis

      Posted

      Zany as in crazy 😵?! Lol

      No probs, am replying backwards, so am coming up to your post now, ty Okapis!😁

    • n58541
      n58541 Okapis

      Posted

      Hey Okapis,

      I will try my best to answer,

      The fight was cause I knew something was not feeling right in my body. The medication didn't really come into it for me. I felt I was not being heard & living with progressing stiffness,pain,discomfort,moving through my body daily, I owed it to self to find out & curiosity & concern other factors.

      I am 45, have had spine & neck difficulties over 10yrs. Then both feet initially, progressing to ankles, hands,fingers,wrists, r.hip, elbows, & occ knees. With variable other symptoms. Oh the joy! Lol.. I laugh cause I have to not knocking the disease & its seriousness, just how I cope.

      Thanks re-alternative, I have read eg;acupuncture &reflexology can cause flares, not fancying that! 😒

      Thanks re-advice on DMARDS, yes I was told at least 3 months for the body to work with & see any change.

      I will certainly look at any info you have offered, need to arm self with as much as. So much to take in!

      Many thankyou's for sharing with me & your reply.

      Yes I try to be positive, I practise meditation & go to Buddhist teachings. its not for all but it works for me.

      You sound pretty upbeat yourself 😁

      No doubt I will be keeping you all updated & pestering you & all for advice 😉 lol..

      Sending positivity 🌼

  • robert271163
    robert271163 n58541

    Edited

    Hi 

    Im on both Sulfasalazine and MTX, sadly both of these will not effect your Psoriasis.

    Sulfasalazine is a DMARD with they use to try to supress the inflamtion  in the joints, as with all DMARDS they have side effects which effect different people in different ways. You must have regular blood tests because of the possible side effects on internal organs, but you will hopefully find the pain will become easier for you. Best wishes Rob 

    • n58541
      n58541 robert271163

      Posted

      Hi Robert!

      Yes was advised to have blood tests each month to check liver function.

      The Sulfalazine sounds quite harsh on the body, was told can get nausea,bowl.probs /pain (manageable?) etc. This is what I am apprehensive about aswell..

      Thanks for your reply, & reassurance,

      Sending positivity 😊

    • robert271163
      robert271163 n58541

      Posted

      Hi 

      You will feel the benefit of Sulfasalazine and hopefully you will not suffer any side effects, you also need to have Flu and phenmonia jabs when available as it reduces your immune system 

    • n58541
      n58541 robert271163

      Posted

      Hiya,

      Will I be offered flu & pneumonia or will I have to ask?

      Thanks, I wouldn't have known. Maybe I'll check it out with the nurse in a couple of weeks 👌

    • robert271163
      robert271163 n58541

      Posted

      Hi not sure where in the world you are but in the UK it is offered but I would double check with your local Doctor anyway.
    • shelleypeot
      shelleypeot robert271163

      Posted

      Here too, Sulfasalazine + MTX + Plaquinel has not worked...I suppose I'll be moving up the med ladder to biologics next. I really, really really am frightened to do that. If anyone has a happy story to share regarding biologics, please send one my way :-/

    • shelleypeot
      shelleypeot n58541

      Posted

      My experience w/ S.zine was pretty benign. No side effects, but I will say that it did create a loser bowel. Which was a bonus because I have difficulty w/ chronic constipation. But again, it was no problem....

       

    • n58541
      n58541 shelleypeot

      Posted

      Hey Shellypeot!

      What makes you feel so very frightened?

      Sorry I cannot give you a happy story, & I don't know enough yet regarding any of this.

      Hopefully others can comfort you.

      Thanks though for your input, its most appreciated 😊

      As you know, I'm just diagnosed, I had to see the G.P today, & he was most surprised!(not my reg G.P, but was baffled)

      Meanwhile, I'm still nonwiser what to do regarding meds.

      T.C, sending positive thoughts 🌠

    • Okapis
      Okapis shelleypeot

      Posted

      Shelley, I'm on my second biologic and very grateful for the quality of life they have given me.

      I can drink alcohol, walk for 3 hours and enjoy life with a minimum of pain. 

      At one stage I was wondering how long I would be able to walk! To me MTX was the one I hated taking because of its known toxicity. Eventually it did get to my liver but I was taken off it at the speed of light by the hospital after a monthly blood test.

      I was on etanercept (enbrel) for 12 years - must have been one of the first in the UK - before NICE approved it. Eventually however the drug lost its efficacy and I developed inflammation in my jaw. (Not recomended). I'm now on Cimzia (cet..... pegol) a newish drug that has produced a better outcome than the first one. I'm much more comfortable.

      What is it that frightens you? These drugs interfere with the immune system in various ways suppressing the body's attack on itself. There are risks with all drugs...the only risk that cant be addressed as with all drugs with the biologics is the long term effect of taking these drugs. They simply have not been around long enough. But they have been tested in exactly the same way as all other prescription drugs.

      I for one took the view that I preferred quality of life now as against any possible long term side effects. I'm now 67 and rather think that there are not that many years left (compared to looking back). I've been able to live in relative comfort.

       

    • robert271163
      robert271163 n58541

      Posted

      HI as your in the UK you should get them but double check with your GP. My surgery holds a day when you can walk in and have them done, ours is on the 15th Oct this year, They are only available at this time of year as they are not produced in the spring, summer months so its important you get them done. 
    • joan00334
      joan00334 robert271163

      Posted

      Hi i hope you're not in too much pain at present. i have been on stelara and its been amazing having clear skin. unfortunately i have liver issues following the surgery for gallstones. i had bought another 6 months of stelara its a sin to waste it. so of you knew anyone who would be interested id be grateful. many thanks. stay safe..

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