Hi everyone!
Im new here and pretty new to PsA.
I was diagnosed within about 10 minutes of meeting my new Rheumatologist, which was amazing after suffering for the past 4 years through various misdiagnosis and uninterested Doctors.
I also don’t have many signs of Psoriasis (only a few small red patches which I never considered anything significant). I’m interested as to whether having PsA guarantees me getting Psoriasis in the future though?
I’ve been taking Sulfasalazine for about 5 months and now with Celebrex (changed recently from Naproxen) and seem to be getting mediocre results…
The inflammation and pain levels are extremely erratic and unpredictable. Though (touch wood) no side effects so far
Im heading for an EMG test soon (nerves and muscle testing as I understand it) - Not entirely sure what that is to find out?
I’ve been told by so many people that diet and intolerances can play a big part in causing inflammation and effecting Arthritic symptoms, and am considering making a visit to a nutritionist…
Would love to hear from anyone that might have some useful insights
Welcome! It sounds like you're getting good treatment. You asked about whether you should expect to get more psoriasis. Not necessarily. I was diagnosed with PsA almost 7 years ago, and still have very little psoriasis.
In terms of diet, there is certainly nothing wrong with cleaning up your diet, but this won't cure you.
As to the NSAIDs, I've been through a number of different ones since diagnosis, and have found that different ones have slightly different effects. If you've been trying one out for a while, then you may want to talk to your doctor about this.
If you haven't already, you may want to check out the newbies guide to PsA. There's some great information. My diagnostic story is included there.
Hi there, Stephia! Welcome here. I’m glad you found us, but it’s a shame that you’ve got this t-shirt too.
Having PsA doesn’t guarantee that your skin disease will get any worse. It might, but then again it might not. Virtually the only evidence of psoriasis that I had was some nail manifestations which could be (and were) ignored. The psoriasis – what little there was – has all but gone away with treatment.
As Stoney says, check the Newbies’ Guide, but you should also consider picking up a copy of the book I recommend in BOOK REVIEWS. It’s the best lay person’s guide to PsA that I’ve found, although the medication information is a little out of date: the newest drugs (and there are several) are not covered in the current edition. The e-book is a bargain, and if you don’t have a kindle, you can get free software which will have you reading it on your tablet of PC in a few minutes.
The complementary therapies section has lots on diet. As Stoney says, diet won’t cure, but it can make you feel better.
I hope that you find this a good place for support and information!
The one thing I have learned is that if you share your diagnosis with well meaning friends they can all come up with some fantastic amazing absolutely sure fire cure. "My Mom's cousin's uncle's brother's wife did x and was cured" As Stoney said a healthy diet won't hurt but don't pin your hopes on an alternative cure. 10 years ago I listened to all the so called experts and tried all the quack cures. I drank apple cider vinegar, aloe vera juice, etc etc etc religiously for up to 3 months on each "cure". Sure I might see a small change for a short time, probably due to just the small changed in my routine. All up it is only the specialised drug regime that has shown any results.
Just make sure you have a Rheumy you can trust, find a gentle exercise routine that keeps your joints mobile (I take a Tai Chi class) and just lead a healthy proactive life. Good luck!!
Glad you have got a diagnoses and can move forward. nerve conduction tests are usually to determine nerve damage or pressure. I'm sure all those wonderful folks who are a part of you being "told by so many people that diet and intolerances can play a big part in causing inflammation and effecting Arthritic symptoms, and am considering making a visit to a nutritionist..." are well meaning they are also full of bull puckey. You have a genetic disease with at least 35 known genes that are not properly developed. It is a part of your genetic make up.While it would be wonderful to be able to change ones genetic make up, its not possible. As folks have had arthritis as far back as there is history It is reasonably certain that the "nutrition secrets" that would have cured it would be pretty well known by now. At the very least they would be in main line publications available anywhere not just in $29.99 self published paperbacks with bigger print promoting the massive medical cover up on the cover of these books than either the title or subject.
Good diet helps, regular exercise helps more and taking all your meds all the time helps the most. Chasing windmills will hurt, cost lots of $$$ and increase your stress levels immensley (and consequently your disease levels)
Firstly, thanks for your replies, and apologies it's taken me so long to reply too (I'm not online too often!)
I'm absolutely not pinning my hopes on any alternative cures, but just hoping I might be able to see a small difference if I try eating better and checking out if I have any intolerances that I should cut out. I emailed my doctor (love that I can do that!) last week to get his opinion and he said it does have some effect and that he's more than happy for me to see a nutritionist... so now I'm trying to find someone that isn't going to munch away too much at my hard earned mulahs! He did say to be careful about not getting conned etc etc and that he's fine if I want to try Copper Bracelets etc (Which I don't - Not big on that kind of thing)
I was put on a short course of Steroids at the time of diagnosis and then moved onto Sulfasalazine and Naproxen. I found that as soon as I missed a Naproxen I was back in agony (and actually still inflamed and sore even when taking it)
So my Rheumy changed me off Naproxen and onto Celebrex instead, whilst keeping the Sulfasalazine going (that was about 2 weeks ago) I'm still not feeling much benefit though and he doesn't want to see me for another 6 months!! (3 months non stop med, then trying to stay on the Sulfa and cutting out the Celebrex) We shall see...
So I think I'm currently in 'The dreaded Gap' and trying to get to grips with the medication changes etc etc...
It's so weird - I can feel almost fine on one day (Just a bit of pain, and the next day be crippled and unable to move. I never know what to expect when I wake up - is this pretty common with most of you?
Sunday I was literally sofa bound most of the day, we tried going out for a little walk (that's pretty much my only way for me to get some exercise right now) since the weather was so lovely... walked (bloody slowly) for about 15minutes and ended up so tired and sore that we had to give up and go home. Don't think I moved for the rest of the day :( Going to bed Sunday night dreading the morning, and woke up feeling not so bad Monday - It's just soooo unpredictable...
Got a few questions but think I'll post those into the relevant discussion (if I can find them!)
But again, thanks so much for any ideas/tips/info - still trying to take it all in!
sorry you're experiencing the ups and downs. It is gong to happen until your meds kick in and start normalizing things. Until then, be gentle with yourself, exercise gently (even when you don't feel like it--on those days especially) and rest rest rest if that's what your body is telling you to do.
My belief is that PsA is a daily meditation on acceptance and tolerance. You can try to fight it and wonder why one day you feel like this and another day you feel like that, or you can simply accept that today is a good day. or not a good day. Using this approach has helped me to talk to friends about how to talk to me about my illness. I don't want it to be the only thing we talk about. So now they ask not how I am, but how today is. And I can simply say "today is a good day" or "today is a difficult day" and move on from there.
Seenie suggests the Gladman book, as do I. I have also reviewed "How To Be Sick" by Toni Berhard. It's a great help in learning to cope with a you that is now defined (not solely but profoundly) by illness. You have a chronic disease but you don't have to be sick all the time. That book helped me to understand that.
Good luck as yo uput all the pieces together. We're here for you.
