Whats in store?

[Pakman1983]

Hi I am new to this forum and although I have had psoriasis for many years I have only recently been diagnosed with PA. I am 24 and have been told this is a very young age to develop this. I was just wondering if anybody could give me some insight into what I can expect. At the minute I have upper back pain. the thumb and index fnger on my right hand are swollen and my elbows and wrist are hurting as of recently. I have problems with putting weight on my feet sometimes aswell. Is this as bad as I think it is.

[peggyb]

Hello Pakman1983. 24 (oh what a beautiful age) is a bit young to have something that is potentially so serious, but if you read different topics and such on the forum you will find there are people who get it much younger. Yes, it is something that you need to take seriously and not blow off. If I would have gotten it at 24 instead of 34, I would have been in even worse denial than I have been in for the last nine years. Even when you are feeling ok, even when the pain is minimal and you can do most everything you want to, PLEASE DON'T IGNORE THE SYMPTOMS!! (I wasn't yelling at you, it's just that this is a very important point.) If there is swelling and pain, there is joint damage going on. Joint damage can sneak up on you, with little warning, until suddenly (and yes it can be this quick) one day you wake up, and you can barely put one foot in front of the other, or your hands hurt so much you can't write or type, or your spine feels like it is fusing together and you can't bend at the waist or turn your head...or whatever, who knows what will happen....But listen up, there is good news...if you find a rheumatologist that listens and cares and includes you in all the decision making about what to do about your disease, and you follow their instructions, taking all your meds just as they were prescribed...then you can really slow down the process of joint deterioration. And hey, you're young...they say that they're getting closer to a cure....who knows, maybe it's true........

Just don't go on like no one ever told you you have pa. I did, and now at the tender young age of 43, I'm told I will be needing both of my hips replaced, probably way before I am out of my 40s. My pa has gone into overdrive. An orthopedist told me, with such care and compassion, that deterioration is happening way too fast for me. He told me he's seen older, much heavier people than me who don't have the kind of joint deterioration I have. He said if I did not get my arthritis and psoriasis under control, then he wouldn't be able to operate on me, and it's completely possible that I will be in a wheelchair in just a couple of years. My little boy, who is just four years old, may have to see his mother in a wheelchair before he gets out of elementary school.

Am I trying to scare you? Yeah maybe I am, just a little. But everything I've told you is true. And it all happened because I chose to ignore what was happening to me, because I hate the treatments and the doctors and most of all the tremendous amount of money it costs. I couldn't stand the disappointment when a drug didn't work for me (it seems I'm quite drug-resistant). I felt like I was robbing my family of things they wanted to pay for meds and docs that did nothing for me, and it wasn't fair to them. I was very impatient, and patience is something you must learn to find when you have this stoooopid disease.

Boy this has really turned into a dissertation...sorry about that....

MORAL OF THE STORY: Don't ignore your symptoms, or you will have so much more trouble down the line. Find a good doc. Take good care of yourself. Keep having fun with your family and friends and enjoy every minute of your life as much as humanly possible. But don't ignore your symptoms.

[AnnieB]

Sorry to hear about your PA. Mine didn't come on until my 40s. But the good news is that they are finally figuring out how this disease works and there are treatments now that were not available 10 years ago (even 5). And new ones coming down the pike. My doctor told me that he thinks that the bad damage he sees in older people who have had PA/RA for many years will be extremely rare in the future. Of course, ACCESS to treatment is still a big issue with so many people without good insurance. Hope you find a rheumy to help you find a treatment plan.

[jpr]

I'm 31, so I understand being young with this very strange, misunderstood condition. While the symptoms of PA will vary from person to person, there are some things in common. PA tends to "flare" and then subside. How much on either end will depend on your tolerance and progression of the disease.

The other thing in common is that I think everyone goes through the grieving process when they learn they have this disease. Don't fight that. Get the information you can on all your treatment options, and make the right choices for you. It's okay to be sad for a bit, but arm yourself with information and support to move beyond it.

Hugs!

[nyoki]

I was 21 or 22 when I was first diagnosed and am now 43. I've been thru every treatment option that has been available (lucky I have excellent insurance). While it has progressed the treatments have allowed me a relative freedom (relative in that I am also diabetic and have always had to be careful). E1 that posted before me is correct; go to the doctor (you'll have more than 1) whenever you feel "off". You'll learn to listen to your body. Time, patience and tolerance for pain is what you'll need to get through all of this. While the rate of degeneration may vary...that it will degenerate is a fact. Pain is not something you HAVE to put up w/ If you're in real pain, tell your doctor and make sure he does something about it.




ego sum non meus poena

[tmartha]

Sorry to hear about your diagnosis. PA is so different from one to another - and there is no telling how it will progress for you or how you will react to different meds - so don't ignore what's going on, but try not to borrow trouble from tomorrow. Face it, research it, grieve, all of that - but try not to worry about how bad it might get - because it just might not. I am NOT saying to ignore your PA. Like PeggyB said, treat it early! But I want you to know that there is hope.

I was dx'd 4 years ago in my mid-30s- feet, ankles, hips, shoulders, a few small joints - but early on I was referred to an excellent, aggressive rheumy. And eventually, after getting on the right meds and changing my whole life - now it's practically in remission. (yeah, did you notice that part about changing my whole life - still have some bitterness, don't I.) I am very, very, lucky - for now - and I wish the best for you.

[RichJ]

hi pakmam1983,
sorry i can't help much but welcome to the p family. you will met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good day all

richard