Newby Here....really long, sorry!

[GimpyMom]

Hello all! I've been lurking here for a while, and...whew!....I've really learned a lot. Thought it was time to join in!

I'm 50-ish, and have been tentatively diagnosed with PA, but with no P that I know of, other than a hairdresser once mentioning that I had psoriasis on my scalp.

My problem began with pain in the top of my right foot after I'd been running. After a lot of tests, cortisone shots, etc. etc., a podiatrist gave me orthotics which caused my right knee to swell up and become painful. After a lot of work on the knee (aspiriating the fluid, cortisone shots), I had orthroscopic surgery which found two torn cartilidges. Viola! The doctor thought I was cured!

Four months later my knee was swollen more than ever and I was sent to an Arthritis specialist, who diagnosed the PA, from my hairdresser's comment and my left hand has two fingers slightly bent at the last joint.

Another aspiration of the knee and more cortisone, and the doctor started me on Plaquenil. I was already taking Relafen, prescribed by my podiatrist for my foot pain.

I felt great for a few months. Absolutely great. hadn't felt so good in two years. My old self again!! The swelling and pain in my knee and foot were absolutely gone. But I had really bad gastointestinal side effects, so no more Relafen, now I'm on Meloxicam.

Well, now my knee is back to being swollen and painful. I can't decide if the Relafin was working or the cortisone has just worn off. And I wonder if the diagnosis of PA is really correct.

Although my knee is swollen and very painful, I can't really say that it's the JOINT that hurts, it's more like the tendons/area around my knee. Sometimes it's the back of my knee, sometimes it's down the front of my leg, somethimes it's my knee cap, sometimes it's just all around my knee. Right after I had the last cortisone injection, I had pain in the front of my lower leg, and the arthritis guy said it was my loose knee cap and just excercise more. Well, it became excruciating, so I went back to my orthopedic doc and he said my fascia was inflamed (which I understand is a common occurance with PA) and gave it a shot of cortisone. No problem there since.

I have appointments coming up with podiatrist and the arthritis doc. I don't have a clue what to ask. I'm taking these drugs which don't seem to be doing a thing, and I seem to be getting worse. The arthritis doc didn't recognise the inflammation in my fascia, which has me a bit worried, if it's common with PA. And really, how much cortisone can these guys stuff in me before it becomes dangerous? Not to mention that I really hate having my knee aspirated, it hurts worse than childbirth, at least to me!!

I live in the CT/NY area, if anyone has a doctor to recommend. I've been sent back and forth among three (podiatrist, orthopod, arthritis guy) and really think I need to get one person who wants to treat all of me.

Thanks for any advice, tips you have. Sorry this is so long, thought I'd get it all out at once!
Deb

[SandraJean]

Hi Deb,

Welcome to the boards. I'm glad you have begun to post but am sorry for all the problems you have been having with your knees and feet. Have you tried to go see a rheumatologist yet for the arthritis you have been having in your knees? They are really good at a diagnois of PA, or other problems you have dealing with pain and discomfort. I have mild to moderate p but have pa and osteo and fibromylagia and it has affected me a great deal.

From what I've heard of cortizone shots and from having them myself, I believe most doctors don't want to give you more than 3 a year.

Has any one ever mentioned any of the new biologists for treatment? One of the main reasons I mention it is that they are known for also slowing down the progression of the pa.

I'm from the upstate NY region out towards Rochester. I'm not familiar with the Doctors in your area, but here on this site there is a listing of Doctors from all over and you could type in your zip code on the front page and it will take you to lists of either dermatologists or rheumatologists in your area.

Please continue to post and let us know how you make out.


Sandy

[easydoesit]

Hi Deb. I know what you mean about it feeling as though the problem is more related to tendons than the joint itself, that is often how it feels for me with my PA. Sometimes I even have pain that seems to radiate from the joint area into the nearby muscles, it's weird.

I'm assuming you have had bloodwork done to help rule out another type of arthritis or condition causing the inflammation? I would ask the rheumatologist about that. From my understanding PA is something that is diagnosed via exclusion of other possibilities (there is no specific test for it), so in the absense of clear psoriasis on your skin I would think your doctors would want to make sure it's not a different type of arthritis. Do you still have the psoriasis on your scalp?

[AnnieB]

I relate. It took a while for me to get a diagnoses of PA. And I had mostly problems with tendons, rather than the joints. I had trigger finger which was resolved with an operation (after trying cortisone shots). I had foot pain and went to a podiatrist and an orthopedist (still wear the expensive orthotics.) Also back pain and a rotator cuff injury that just would not heal. Eventually swollen fingers. So I did eventually get a diagnoses of PA from a rheumy. I am now on Humira which is helping a lot. (My rhemy is Dr. Jason Faller in NYC and I like him.)

[GimpyMom]

Thanks for the sympathy and help. Yes, I've had all the blood work to rule out other types of arthritis. My orthopod was pretty thorough before he recommended scoping my knee to see what could be wrong. I guess Lyme disease can show up in your knee too, and he tested for that a couple of times.

No, I have no psoriasis on my scalp now and don't know if I've ever had it. However, when I googled PA and started seeing photos of the hands of people who have PA, I was stunned. My dad's mom had hands just like that, fingers fat like sausages and all bent at odd angles. They knew she had arthritis, but she died in 1967, and nobody remembers the details. If there is such a strong hereditary link, then that might be it.

Thanks again for all the support. That's what I really needed!
Deb

[JesseLou]

The extremely conservative docs say no more than 3 cortisone injections per joint per year. Many say there is no limit - as long as you're using systemic drugs to control the disease.

My husband is an orthopod, and the way he and many other orthopods look at it is that the likelihood of permanent joint damage is far greater in a joint that is allowed to remain inflamed, than in a joint that has been injected with cortisone multiple times to eliminate inflammation.

The dangerous steroids are those taken systemically over an extended period of time.

[RichJ]

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

have a good night all

richard

[marinersarenumber1]

Hi Deb - A few short comments regarding your current challenges. I had P long before PA, and the symptoms you mentioned are similar to what I have previously experienced. Left knee was operated on twice, fluid drawn off many times, used Relafen and got sick on it. I stopped the cortisone shots long ago. Too much bad press, etc. to be a long-term cortisone user. I'm using Enbrel now, with great results. Like yourself, my feet hurt, and I have some swelling in the joints of my left hand. For those that replied to your post, I agree 100% - Get to a rheumatologist as soon as you can. You'll eventually arrive at a medication regimen that will work. Good luck!

[Nasus]

Hi Deb,

Your case sounds familiar to me. I am 46. Diagnosed 2 years ago with P and PA, started overnight with knees swelling and in such pain could barely walk. Had previous knee surgeries for torn meniscus and arthritic change on the other from waiting so long for surgeries. Orthopedic doc was stumped and referred to Rheumy who was very good at diagnosing.

Also had plantar fascia probems years earlier. Toe swelling, trigger finger long ago, and hands now. I am on Methorexate 20mg/wk and Humira shots every 10 days. It helps, but there is always something going on.

Hope you get something other than cortisone shots. Not good over time. Treat agressively to stop damage early is what I hear. Once it's done it is done.

Good luck and look forward to your progress reports. Yes draining fluid from knees kills.

[CrazyRed06]

I know this sounds nuts...but you guys are luckier than I am. I'm 26 and I was diagnosed with PA about two-three years ago. I was diagnosed with psoriasis at age 4 (thanks a bunch chicken pox!). I haven't had much experience with medication but currently, I'm on voltaren. My doctor had given me that with medrol (steroid) and I was on that for about a year. The only downsides with it that you gain weight and it thins out your skin. The upside was it cleared my skin and I did gain some weight in some other areas that I'm not complaining about :).

The voltaren does give me heartburn from time to time but like with any drug there are side effects and it's really not all that bad. Of course right now, I'm not sure if it's helping. I had knee surgery three weeks ago and at the moment, I can predict the weather. Seriously...it's raining here right now! :)

I hope you find something that works for you. I have to give it to you guys, you've got guts to use remicaid and such. I'm deathly afraid of needles I don't know how you do it.

[RichJ]

hi crazyred06,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[Ihurt]

I know this sounds nuts...but you guys are luckier than I am. I'm 26 and I was diagnosed with PA about two-three years ago. I was diagnosed with psoriasis at age 4 (thanks a bunch chicken pox!). I haven't had much experience with medication but currently, I'm on voltaren. My doctor had given me that with medrol (steroid) and I was on that for about a year. The only downsides with it that you gain weight and it thins out your skin. The upside was it cleared my skin and I did gain some weight in some other areas that I'm not complaining about :).

The voltaren does give me heartburn from time to time but like with any drug there are side effects and it's really not all that bad. Of course right now, I'm not sure if it's helping. I had knee surgery three weeks ago and at the moment, I can predict the weather. Seriously...it's raining here right now! :)

I hope you find something that works for you. I have to give it to you guys, you've got guts to use remicaid and such. I'm deathly afraid of needles I don't know how you do it.


I was on Voltaren for a while too and the heartburn was killer. My doc put me on Protonix-works wonders!!!!! No more burning the midnight oil here!!! You might want to try it, but you do need a script for it.

[MikeK]

Hi Deb,

Welcome to the Board! :cool: Nice to meet you.

I'm sorry to hear that you've been going through such a rough time. The symptoms you've been describing sound like you've got some form of arthritis. There are a small number of people who post here who've gotten a PA diagnosis even though they have little or no psoriasis. I'm impressed by the fact that your hairdresser's one time comment about psoriasis came up during your discussions of your medical history with your doctors. It sounds like your in good hands. PA is very hard to diagnose (there's no specific test for it) and there's always the possibility that you're dealing with another form of arthritis or with multiple forms of arthritis. (Some people suffer from more then one form of arthritis.) Even though it sounds like your doctors are on the right track, it might be helpful to get a second opinion. Either to confirm to diagnosis or to discuss other treatment options. What city do you live near? Perhaps someone who also posts here lives near you and can recommend someone.

Finally, here's a link to a "must read" post by JesseLou; she discusses the questions that must be asked and the tests that must be ordered whenever PA is suspected: http://www.psoriasis.org/forum/showthread.php?p=74786&highlight=question#post74786.

I hope this helps.

Good luck. I hope you feel better soon. Keep us posted. Let us know if you have any other questions and please don't be a stranger.

Mike

[GimpyMom]

Thanks so much to everyone here for the support! I just had another visit with the arthritis doctor, and I'm hoping things will get better soon. My doctor has just switched the Meloxicam for Celebrex, and told me to continue the Plaquenil. She also told me to begin an Arthritis Aquatics Program. I've been so tired and achy lately, and of course excercise is the first thing to go! I'm really hoping to see a little improvement in my knee in the next few weeks.

Deb