Recently diagnosed with Psoriatic Arthritis - please help!

alysha

hello.... I'm 29 and have recently been told i have PA due to a bone scan and the fact that i had psoriasis 10 years ago.

Bone scan shows arthritis in feet, heals, hips, shoulders and knees.

I suffer from extreme discomfort in my lower back, hips, bum, (cant stand still for longer than a few minutes and cant sit comfortably in most seats, get stiff very easily) and sometimes my feet, hands and legs hurt so bad.

I have not had an MRI (they just wont seem to let me have one) and i have nothing showing in my blood or x-rays. nor alot of the other common symptoms.

Sometimes i wonder if the arthritis is coincedental, and maybe i also have disc damage, hence the lower back pain.

The Rhemetologist immediatly subscribed Prednisone, followed by Methotrexate or Sulfasalazine (depending on how soon i want to get pregnant)
This freaked me out when i read about all the side effects and peoples experiences with these drugs.

Im sure many of you have been advised to do the same thing.

I was just hoping for some feedback of how other sufferers of these Spondelaprethys (spelt?) diseases deal with there pain, i really dont want to take the hardcore drugs as my very first option, but i also dont want to worsen and prolong my problem.

I am getting a second opinion in a few weeks from another Rhemy.
Any tips regarding what kind of "additional" information i need to ask for would also be so helpful. There's so mcuh to learn about and im feeling very lost in it all.

Thank you so much for any tips anyone can give and i hope your having a pain free day!

frogmorton

Hi Alysha

Ok.

I understnad it all sounds a bit scary yet.

First off the MRI - can you afford to pay for one yorself??? They cost about £400 I think. If that would put your mind at rest. I have had back surgery myself due to disc which wuldnt go back in and a fracture I didn't even know I had :shock:

I was in agony - symmptoms were - pain down leg into foot - from lying flat on bed hurt to lift either legs straight up. Then finally I turned over one morning in be and...click lost all feeling in rt leg. Most of that came back so all is well now.

I think you need to tell 2nd rheumy your concerns so you maybe get the MRI on nhs...??

I am on hydroxychloroquinine and side effects have been negigable. Although I haven't got Pa (they don't know yet what it is but he calls it RA - neg bloods).


MI was given it at my first visit to the rheumy too and a steroid jab in my bum! :shock:

Do you take someone with you when you go?? that can help a lot as they can say it as they see it and they might remeber things you dont...

My suggestion?

Start a list.....


Hope you get on ok

Love

Toni xx

sharmaine

Hi Alysha

I'm sorry to hear about your diagnosis. Since I was diagnosed with OA I've noticed some big changes in my skin. I have a number of scaly patches on my body but when I told my GP she simply said it was nothing to worry about. I keep slapping cream on but they never go away.

After my TKR I may pop into the surgery again and ask her to look at them.

I'm sorry I can't give you much advice regarding PA but hopefully someone on the forum will help you.

There have been threads about this before. You're too young to be suffering!

Take care.

Sharmaine

alysha wrote:

hello.... I'm 29 and have recently been told i have PA due to a bone scan and the fact that i had psoriasis 10 years ago.

Bone scan shows arthritis in feet, heals, hips, shoulders and knees.

I suffer from extreme discomfort in my lower back, hips, bum, (cant stand still for longer than a few minutes and cant sit comfortably in most seats, get stiff very easily) and sometimes my feet, hands and legs hurt so bad.

I have not had an MRI (they just wont seem to let me have one) and i have nothing showing in my blood or x-rays. nor alot of the other common symptoms.

Sometimes i wonder if the arthritis is coincedental, and maybe i also have disc damage, hence the lower back pain.

The Rhemetologist immediatly subscribed Prednisone, followed by Methotrexate or Sulfasalazine (depending on how soon i want to get pregnant)
This freaked me out when i read about all the side effects and peoples experiences with these drugs.

Im sure many of you have been advised to do the same thing.

I was just hoping for some feedback of how other sufferers of these Spondelaprethys (spelt?) diseases deal with there pain, i really dont want to take the hardcore drugs as my very first option, but i also dont want to worsen and prolong my problem.

I am getting a second opinion in a few weeks from another Rhemy.
Any tips regarding what kind of "additional" information i need to ask for would also be so helpful. There's so mcuh to learn about and im feeling very lost in it all.

Thank you so much for any tips anyone can give and i hope your having a pain free day!

dopeykit

Hi Alysha

Sorry to hear you are in so much pain. I am 27 and was also recently diagnoses with psoriatic spondyloarthropathy (taken me 3 weeks to learn how to spell it). I get pain all the places you describe and am often quite grumpy first thing in the mornng whilst I loosen up. I have something called spondylolithesis in my spine after an accident as a child but this type of psoriatic arthritis does normally cause back pain.

There is some really good info on the arc website
http://www.arc.org.uk/arthinfo/patpubs/6029/6029.asp

and also here
http://www.spondylitis.org/

and I've also found the Psoriasis Help Organisation really useful.

I'm waiting for some more more tests before I can start methotrexate etc and am currently taking dicoofenac and tramadol for the pain. I find wheat hot packs really good for the pain and I've been doing more pilates and using a staionary bike which has also really helped. For some reason hot baths and showers seem to make it worse for me.

Only you can decide about the drugs but it sounds like you had to wait a long time for diagnosis. The drugs like methotrexate are supposed to stop any further joint damage so should help in the long run.

Hope you feel a bit better

kit

lindalegs

Hi Alysha and welcome to the Forum.

I agree with what the others have said but would also add that we all freak out when we read the side effects of the drugs. I have RA and not PA and because I've been like this since age 27 (24 years now) have been on different drugs along the road.

The brilliant thing about the 'hard core' drugs is that they do protect the joints and hopefully stop the joint deformations you can get as the disease progresses. I've been on Mtx for 20 months and the side effects settled quite quickly. Another thing is that you will be closely monitored by your medical team and will have regular bloods done to make sure you're okay .....so please don't dismiss them out of hand. I wish I'd been able to have Mtx in the doseages they have now when I was a young woman

Luv Legs

skezier

Hi Alysha,

I am sorry you have this. I also have pa but cus I have oa as well I don't really know which is which in my back and neck. There could be disc trouble there and maybe you could just ask them why they wont give you an MRI? Log ago I couldn't get one and I and done but the last 2 have been done on the NHS and you might be able to lever them if they tell you why they wont. It could be to do with the radiation side?

I think it might be an idea to get a double appointment with your gp and go and talk to them about your concerns etc? Also when do you next see your Rumo? Ask them as well why no MRI. They might be able to tell if the disc's are a problem by examination and all the MRI would then do is show them what is happening basically to your spinal cord. Oh and can you take someone with you next time cus it can help to have someone there.

Like Kit said go have a look at the links cus for me the more you know about it the less scary it gets somehow. One thing though it really does get easier and when they get your meds sorted that should help as well. Sending you a cyber hug and a hope it all will get easier for you soon. Take care Cris