Hi everyone, i am here because i need all the help i can get. After being wrongly diagnosed at about 11yrs with Legg Perthes i am now 51 and in some serious joint pain on a daily basis. It turns out that i have both psoriasis and rheumatoid arthritis running in my family. At the moment i am trying to find a decent specialist here in south wales to go to as the last one i saw told me i just had to live with it.
Any advise would be great as i have no idea where to go from here.
Know that what you are experiencing IS REAL AND NOT IN YOUR HEAD!!! Arm yourself with as much information on the diseases, and write down all questions that you may have. Both diseases are chronic and without cure, but there are several medicines out there that can help slow the progression and damage. Yes, there will always be some sort of pain that we're going to have "to live with," but we don't have to live in misery and misunderstood!
Gyrocapt, also know that you ARE NOT ALONE!
Stand strong...
Go to a rheumatologist and describe your symptoms, medications such as humira or remicade could certainly make your life a lot less painful. Believe me as a patient who has tried the entire spectrum of treatment, nothing works best in terms of long lasting pain relief as well as the biologics.
Best Of Luck
Welcome, Gyrocapt!
Here’s a lead for you: go to the MEMBERS part of the board, and search for Sybil. I believe she knows a good rheumie within striking distance of where you are.
And here is a thread from our DISCUSSION page which you may find helpful:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/uk-based-specialists
Do ask if there’s anything else we can help you with!
Seenie
After 8 years almost the same situation my new rheumatologist did one test for gens and sad "It is PsA!"
And I am almost 3 years on Enbrel and now on Remicade. I is a BIG relief!. Go to a good Rheumatologist!
Good luck!!!!
Roznina
You do not have to “just live with” debilitating pain. You will always have pain if it turns out you have PsA. But there are plenty of drugs to make your life more comfortable! Praying you find a rheumatologist that can help you!
Thanks everyone for your replies, i am in the process of trying to get an appointment with the specialist in Bath, but unfortunately being in Wales i have to get them to ok it first. As for the pain, it has always been there and ive learnt to manage it, but in the past few years things have got worse, so fingers crossed for a speedy appointment.
Welcome ! We are all here to help and support you. This board has an amazing wealth of information from the collection of the smart people on here ! :-) So, tap into this knowledge whenever you have a question, and contribute your advice and suggestions whenever you can.
I've fired at least 4 rheumatologists until I found the one I have now and he's great. If a rheumy or doc isn't listening to you or helping, move on. You don't have to "live with it." It took 18 months and 9 docs until I was finally diagnosed with PsA - I'm glad I didn't just "live with it" and be misdiagnosed and in pain.