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Posted 5/25/2007 5:06 AM (GMT 0)
One of my biggest concerns is that I have had this since mid to late December and every doctor keeps sending me to another doctor where I have to get more bloodwork done and so on. Like you stated above, its very hard to fix damage already done and while i keep going from doctor to doctor I fear more damage is being done while I wait for a diagnosis. How long did you have joint pain before your diagnosis Ducky? Given that I have had this feeling since the end of December, does that seem like a very long time to go without starting treatment?

Sorry to keep asking all these questions Im just very concerned about this.....thanks for all the help you have provided thus far.
Posted 5/25/2007 4:12 PM (GMT 0)
KArma, what kinds of Docs are they referring you to? One good Rheumatologist should be able to diagnose and treat you.

Unfortunately, thos of us with Spondyloarthropathy often spend years trying to get a Doc to treat us, so 6 months is not too bad, but I can certainly understand how frustrating it is. I began having symptoms when I was only 13. As time went on, all the synptoms were there, but none of my Docs ever put it together. The end result was that I wasn't Diagnosed until I was 38 and had first been Diagnosed with Crohn's Disease. By then, I had done the research myself and knew I had Spondylitis. I demanded a referral and eventually got treatment, but only because I pushed so hard for it.

I hope you can find your answers and relief soon.
Posted 5/26/2007 12:21 PM (GMT 0)
Hey Karma - It took me a while before I was diagnosed as well... that the thing with PsA, it is hard to diagnose and until you go to a rheumy, you will probably not get diagnosed correctly.. I first started noticing the symptoms in October 2003, it wasn't until March 2005 that I was diagnosed with PsA... It took me that long to get to see a rheumy... I had no idea what was wrong with me, and I went to numerous docs.. My GP thought I had just jammed my toes.. and needed orthodics, so I went to a Podiatrist.. he thought I had broken bones, then it went to neuroma.. then after my bone scans and MRIs he realized it wasn't a neuroma, so he put me in a cast, which did nothing, but oh well.. then actually after I had looked some stuff up on the internet, and found out that there was an arthritis that was assocaited with psoriasis, I took that information into my podiatrist and he said "Well, why didn't you tell me you had psoriasis?" 'Cause he had tested me for RA, but your bloodwork may not indicate anything with the PsA... Within 5 minutes of seeing the rheumy, I had a definite diagnosis of PsA, Dactylitis and Spondylitis... I immediately started Enbrel, and have been doing great ever since. You need to see a rheumy, and soon!
Posted 6/4/2007 12:11 AM (GMT 0)
Hello! I've recently been diagnosed with psoriatic arthritis & my Dr wanted to put me on Remicade but I said no to that. It just seems so extreme. So I've started methotrexate & that sounds like poison! The side effects are frightening. But reading through all the med forums it sounds like these are the most effective meds on the market for this disease. I am just so anxious about taking this stuff as not having to take anything in my life other than pain killers otc & prescriptions, and antibiotics. I'm 53 & devastated I have to use this stuff! Plus, it seems I can't have my glass of wine at night! lol I know, pain or wine, which to choose. Do I go with the flow or are there other choices without such severe side effects? Should I get a second opinion on meds? How confusing! I should say I've had psoriasis for more than 10 yrs. on my palms & scalp & recently developed severe pain in hands, shoulders & feet. Thank you for any thoughts on this matter.
Posted 6/4/2007 2:56 AM (GMT 0)

njcats said...
Hello! I've recently been diagnosed with psoriatic arthritis & my Dr wanted to put me on Remicade but I said no to that. It just seems so extreme. So I've started methotrexate & that sounds like poison! The side effects are frightening. But reading through all the med forums it sounds like these are the most effective meds on the market for this disease. I am just so anxious about taking this stuff as not having to take anything in my life other than pain killers otc & prescriptions, and antibiotics. I'm 53 & devastated I have to use this stuff! Plus, it seems I can't have my glass of wine at night! lol I know, pain or wine, which to choose. Do I go with the flow or are there other choices without such severe side effects? Should I get a second opinion on meds? How confusing! I should say I've had psoriasis for more than 10 yrs. on my palms & scalp & recently developed severe pain in hands, shoulders & feet. Thank you for any thoughts on this matter.

Posted 6/19/2007 11:10 AM (GMT 0)
It seems I've stopped this forum dead in it's tracks. I still don't understand how a dermatologist can treat psorisis for years & not know that it can contribute to arthritis down the line! And if they do know, they don't mention it! These Dr's are supposed to know these things, no? It's like the left hand doesn't know what the right hand is doing. I guess I just have a problem with Dr's overall. Good day all.
Posted 6/19/2007 5:59 PM (GMT 0)

Dear Njcats,

I was as flabbergasted as you that my Dermatoligist did not connect the dot's for me.  It was an Orthopod who looked at my nails and concluded I needed to see a Rhuematologist.  I have recently been having really awful pain.  My Dr. has mentioned Enbrel as a possibility. 

Everyone else,

I would like to hear from everyone that has been on Enbrel for awhile (2+ years).  I am concerned about longterm effects.  Since this suppresses TNF my biggest concern is increased risk of cancer.

Posted 6/20/2007 11:10 AM (GMT 0)
Isn't it awful how one drug can help one thing but bring on something else? Right now I quit my mtx because I can't have my glass of wine at night [limited to 2 drinks a month] so if I take mtx for PsA & have my glass of wine I'm trading PsA for a more liver damage because mtx's effect on liver is severe. I know, quit my wine, but that's my one indulgence. I've metioned this before in another forum. I know liver damage is reversed when stopped but that one glass of wine can complicate things. Gosh, I want to wake up to the '80's again! Such a great decade for me! As David Lee Roth said "When I die, cremate me & scatter my ashes on the '80's!" We need a LITTLE humor these days. I hope to make someone smile with that. Anyone remember laughter? [Led Zepplin] :) Good day all. >^..^<
Posted 6/21/2007 2:19 AM (GMT 0)
hey njcats.. did your dermatologist say that they didn't know there was a psoriatic arthritis out there?
Posted 6/21/2007 11:01 AM (GMT 0)
Hello there!  At the time I was being treated for psoriasis I didn't have any signs of arthritis.  My surprise now is when I was being treated for it, my dermo dr. didn't mention at all, "if I don't get this under control it could lead to PsA."  I had no idea there was such a thing as PsA at the time.  So, again, all the treatments I've had over the years to get psoriasis under control & I've tried quite a few remedies with 2 dr's., noone connected it....

At this writing, my psoriasis is practically gone. I have it on the palms of both hands. [just a few white spots.  Looks like it could & probably will, return if I'm not diligent with my creams] & have not had any flare ups for weeks.  I'm considering going back to dermo dr. to tell her about this.  Perhaps she just doesn't know?  I find this hard to believe.Does the patient have to educate the dr.?  Or perhaps she thought my psoriasis just wasn't "bad" enough for me to get PsA?  I'll have to look into this.  Others in this forum have also said their drs. have not connected it.  I'm wondering, why do WE have to tell THEM?  They are the ones that went to school for this stuff!  I fell like l'm going around in circles.

Posted 6/21/2007 11:28 AM (GMT 0)
Hi there,
Just reading your posts, and this does seem pretty common. I didn't have psorasis, but was being treated for over two years for foot problems, lot of them. Coritzone injections, had orthodics made, neuroma surgery, even had a knee scope done. So, saw a poditrist, an orthopedic, plus my primary. Finally, problems started moving to my other foot, doc was getting ready to do another surgery for another suspected neuroma and bunions, I showed him the swelling in my hands, and he said"what do you take for arthritis?". THEN I got sent to the rheumatologist. But, as has been said here before, it is common to wait a long long time for a diagnosis of things of this nature, because the symptoms could be so many other things.
My personal theory is that it is because there are so many specialists. We have to see so many different doctors to get treatment, that unless they are in constant communication with each other, they are so focused on their own specialities , they just don't connect the dots. So I guess, yes, sometimes I think it is up to us to get as informed and proactive as we can about our healthcare, as frustrating as that can be.
Anyway, just my thoughts, for what they are worth!!
Take care all,
Jody
Posted 6/21/2007 7:14 PM (GMT 0)
babyplace, that's the best explaination I've read so far. Thanks for your thoughts. I certainly can understand that.
Posted 7/3/2007 11:42 PM (GMT 0)
Hi, I was just dx with PsA today and I don't even know what to worry about. Can people who are being treated for it function well? The medications seem pretty scary too, I see increased risk of malignancy and major infection. I would love it if anybody has some positive words about their own experiences.

I live north of Philly and I go to Rheumatic Disease Associates in Horsham if that's familiar to anybody.

Thanks
Posted 7/7/2007 9:48 PM (GMT 0)
hi there,
welcome to the forum, I don't have PsA, but there are several here that do. I'm sure they will come along and answer your quesions. I have RA, so can't really help with any treatment type questions. Some of the medications are the same, and please remember that the laundry list of side effects don't happen to everyone, they have to list every slight possibility. I was scared to death too, but everyone here helped so much! In the meantime, try not to worry...this is a great place to find the encouragement and info you need.
Take care!

What meds did they put you on?

Post Edited (babyplace) : 7/7/2007 3:51:00 PM (GMT-6)

Posted 7/17/2007 12:37 PM (GMT 0)
I haven't taken any meds yet beyond OTC stuff.

Has anybody tried Homeopathic treatments? I saw a homeopathic MD yesterday and he thinks there's a chance the PsA can be managed without the major drugs. I've never used Homeopathy before but it seems like it's worth a shot.
Posted 7/18/2007 5:18 PM (GMT 0)
What do the sores for PA look like? Do they come on at once, or one at a time?
Posted 7/18/2007 5:37 PM (GMT 0)
Hi sjf127! I have not taken any meds for PSA nor do I have PSA. However I do suffer from Fibromyalgia and Arthritis and did take ALL homeopathic meds for my issues for 2 months at the end of 2005. I was okay for a while,I felt okay, then boom,I crashed! I could barely get up my stairs, depression, pain,fatigue. It all came back x10! And those homeopathic meds are very expensive, more because they are not covered under most insurances. It has been about 18 months since all of that.... I am better than I was then,and I am on all perscription meds I was on before the episode and then some. Hope my experience helps you! Good luck in what you decide. It may work for you!
Posted 7/20/2007 2:26 PM (GMT 0)

Hello everyone.  This is my first post to this site.  There is some very interesting information here and I'm glad to see I'm not the only one with questions.

My 13 year old daughter was recently diagnosed with Psoriatic Arthritis.  I myself have Lupus and have Lupus induced arthritis, but that's another story.  My daughter does not have Psoriasis.  She only has the arthritis.  I have known for several years that something wasn't right.  She was always complaining of pain in her wrists and ankles.  Her pediatrician just kept sending her for x-rays even though we told her she didn't injure herself.  Well, after about 2 years of that I had to change insurance after getting a new job.  At that time I had to find a new pediatrician. I told them about my disease and they decided to run tests.  Here Rheumatoid factor was elevated and so was her ANA.  They referred us to a Rheumatologist. Our first visit didn't go so well.  She wasn't having any pain or swelling that day so he didn't diagnose with anything. We left there frustrated. about two weeks later, she swelled up so bad.  The doctor was out of town at a conference so I took pictures of her hands and feet and emailed them to the nurse.  She in turn emailed them to the doctor and we were back in the doctor as soon as he was back in town. She was diagnosed that day (three weeks after her first Rhuemy visit) with PsA.  He said she looked like a totally different person.  He couldn't believe how the disease progressed so fast.  He put her on methotrexate shots once a week and folic acid.  She started taking a calcium pill due to the mouth sores and has also added a new ointment for them as well. We went back to the doctor about four weeks later and he was really shocked to see the damage that was being done to her joints. He has told us she had arthritis like an adult and it's getting worse even on the methotrexate.  We start Remicade on 8/16.  I know that's a long time away, but that's the soonest they could work us in after I got done fighting the insurance company to approve the treatment.  It has been a long road and continues to be, but we are working through it.  My biggest challenge is fighting my own pain and fatigue while trying to take care of my two daughters.  I am a single mother with no help from their father.  Now they have noticed swelling in my 10 year old daughters ankle.  I hope it's just a sprain or something. 

Please, keep the faith.  I hope you all start feeling better soon and find the rights meds that work for you.

Sorry this was SOOO long.

Jennifer

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