Hi, I'm a 30 year old male and I was diagnosed with PA (Symetric) when I
was 21. I'm curious to interact with some people to get some ideas on
how I can improve my health and find some company as I've never met
anybody with my arthritis. It's a bit odd haveing experienced my 20's
with this condition. I thought I'd post my main symptoms to see if I share
some specific symptons/areas. The psoriasis began with a patch right
below my belly button, it has since spread to my scalp and sometimes
face. I can get by with the psoriasis, it rarely gets too bad. It's the
arthritis that hurts me most. I find myself very sore on my hips. Also my
front and back thigh muscles (I want to know more about this!). My
knees (where it all began). I also get very sore on the back of my neck...
It even gets a bit puffy. On and off my hands, shoulder joints, index
fingers, and feet also hurt. As I'm sure is the case with most of you, it's
the worst in the morning! I can hardly scrap myself out of bed. I try to
not let it affect my family life or complain too much to my wife, so I suck
it up. But I need a release! I'm also a musician/producer so I sit for long
periods of time. I've found biking can be helpful, but I can only do that
for a portion of the year. I'm hoping I can find someone else out there
who can relate! haha Talk to me. PEACE.
Hi Slicker,
i am 30 too... I was looking forward to my 30's as the best years of my life but am battling this disease and sometimes I don't exactly win (although I never admit to losing
Are you on any medication? Just a thought on your thigh aches - it could be referred pain or pain because of extra stress on the muscles due to your hips and knees? Sitting is murder to me - I had an assessment with an ergonomist and have a lovely chair for work along with a laptop stand and other bits that help enormously. In the UK we have a Government scheme called Access to Work that does the assessments and advises employers on equipment etc. They meet some of the cost if it goes above a certain level too. A few other strategies I use - gel heat packs for hands and feet, electric blanket that I switch on before getting up, by the time I eventually haul myself out of bed my back is a little less stiff, I also use it in the evening when I get back from work to help me relax. Short walks help but i know my limits - good days up to half a mile, bad days just the end of the street...
I hope that you find this site useful, feel free to ask me any questions!
KT
Hello Slicker!Hi Slicker,
I've only been on this board for about a week myself.
I've had PA since I was 23 and psoriasis since I was 9. Unlike you, my psoriasis can get pretty bad and is resistant to meds. I've had periods of time where my arthritis has not been a big deal, including a 7-year period when I was getting my PhD.
About two years ago, it came back with a vengeance. Really, really bad pain everywhere. Getting up, getting dressed, making it to my car was just awful Part of the problem was that I had to wait 4 months to see the doctor who could authorize me for Humira. For most of that time, I was only on 5 mg of prednisone and Aleve and I basically had no medical care for the arthritis. For me, Humira has been a godsend. I'm on it weekly + 20 mg. MTX and 5 mg prednisone. Not only has it really helped my arthritis, but my psoriasis has almost disappeared after I had tried everything including Raptiva (a biological for psoriasis) and 25 mg MTx.
My arthritis symptoms are much better this winter, but odd. For example, all of a sudden, I can't use one knee. This will last for a few days, then a new joint puffs up. Also, this year, my muscles (???) seem like they are getting inflamed.
I'm trying to lose weight and lower cholesterol right now, so I really need to exercise. I just try to work around the pain, take advantage of the times when my legs and feet are doing better. For me, walking works the best since its low impact.
I'm in my forties now, but I remember having PA in my 20s. It was strange because everyone else was healthy. Now, everyone my age has something. It might be a bad knee, bad back, ADD, but everyone has a struggle so I don't feel so odd.
Nice to meet you (and everyone else).
Jennifer
Hi Tangent,I am contemplating embrel but am nervous and have my reservations. I have full blown psoriasis that is from head to toe and I replace my skin because of this illness 12 to 15 times a month and my body barely keeps up with the constant skin problem. Now I have a brother to the psoriasis that decided to join in on the fun and make it a little more interesting by taking my joints and bending them to the point that the swelling and pain makes it real hard to hold a cup of coffee or write with a pencil. My left hand is swollen to twice the size as the other hand and has been like that for a month. All this while I fight the psoriasis infection and constant treatments to balance that.
I need to get some feed back from someone whom is taking embrel and can tell me a little of the side effects or the pros & cons.
Hi cidlvj4,Hi everyone, this is my very first posting to any board...please be kind... I've been reading postings for a couple of months now, getting some great information on this new disease of mine, PA. Was only diagnosed in Dec. Have been on 20gm Mtx for 7 weeks now, 5mg of folic acid the day before...still waiting for miracle...and have gone from 10mg to 5mg of Pred recently...Ouch! Also taking the occasional Ibuprofen + to ease the pain now and again.
No major side effects to report...yet. I am certainly a lot more mobile and in less pain than before being diagnosed and starting meds...I could barely walk a couple of months ago. The RA is mainly in feet, still very painly to put feet on the ground in the morning or after sitting or driving for a while. Afternoon is better. It's comforting to hear some of your observations using MTX ie. eye sensitive to sunlight, a bit tired the next day, a bit queesy.... I get all that...
Anyway, it's nice to write to you finally (hope it publishes OK). I'm 42, leaving on the East Coast of Australia, mother of 3 boys (inc. 9yo twins), all gorgeous, husband is Mr Mom. I run a sushi wholesale business and work full time for the Govt helping small businesses. Haven't slowed down much yet, although my hectic schedule probably contributes a bit to developing RA...who know...
I probably can't be of much help as I'm new to this, but I'll try and think of some good questions to keep the dialogue flowing and keep in touch...
Coops
Hi slicker,
I am contemplating embrel but am nervous and have my reservations. I have full blown psoriasis that is from head to toe and I replace my skin because of this illness 12 to 15 times a month and my body barely keeps up with the constant skin problem. Now I have a brother to the psoriasis that decided to join in on the fun and make it a little more interesting by taking my joints and bending them to the point that the swelling and pain makes it real hard to hold a cup of coffee or write with a pencil. My left hand is swollen to twice the size as the other hand and has been like that for a month. All this while I fight the psoriasis infection and constant treatments to balance that.
I need to get some feed back from someone whom is taking embrel and can tell me a little of the side effects or the pros & cons.
[/QUOTE]
Hey!!..I used Enbrel for about two years with pretty good results...it helped with the Psoriasis and really did well with the PA. It began to have a lessened effect so....last March I was switched to Humira ( once every 14 days injection) and it took a couple of months BUT my o' my what a difference. My Psoriasis is almost gone and the PA is currently a non-issue. As to side effects, niether Enbrel or Humira have given me any problems. I clean the injection site, then use an alcohol wipe, take the injection, and clean the site again with a wipe...and no problems. Hope you get some relief.
Jennee,
Oddly enough, my "muscle pain" turned out to be blood clots. I have something called lupus anticoagulant. A lot of people with PA and RA have this or another autoantibody -- about 30% -- but in a small minority it causes blood clots. That is what I was feeling.
I kept on having fevers and started having pleurisy symptoms. A very sharp internist picked up on the symptoms and I had a CT scan of my lung which showed that "a bunch" (her word) of clots had travelled to the right lobe of my lung. I had a lot of clots in my legs also which explained severe calf pain that I was having.
I'm OK. I'm really lucky. Its easy to treat with coumadin.
What's funny is I thought I had fibromyalgia also.
To the original starter of this topic ...
I post on the RA message board usually but check out this one since you are all my people. I've never even met someone else with PA so its nice to meet people virtually.
Jennifer
Cividj
I haven't taken Enbrel, but I have taken Humira for almost 2 years. I started it because of PA but its done amazing things for my skin.
Nothing else ever worked. Like you, my psoriasis was everywhere and difficult to control. Some of the time I was the issue. I would get discouraged about spending 30 min to an hour each day with topicals that stained or hurt.
I'm actually having active PA again so the Humira is working less well for that than for the psoriasis.
I had been on Raptiva which is only for psoriasis, not PA and that didn't work.
Hope you try the Enbrel.
Jennifer
Just saw this thread. I have had PA for 3 years now, (well 3 years diagnosed, probably many before that). I did take Enbrel but am now on Remicade. I am one of the ones where the Psoriasis was minor and the arthritis the main problem. I notice that few have mentioned the fatigue and depresion/anxiety aspect of the disease. These are my main problems, i can always take Vicodin for pain, have yet to find a good cure for the fatigue. Sleep is also an issue, its 5am and i still have not slept, thats about 40 hours now, a common ocurrance.
I have had some issues with certain drugs, Pred is the worst, very hard to get off. MTX has now been removed from my cocktail cabined due to liver and stomach problems.
The hardest thing is getting a good RH.
Hi Clufus,
I also have PA. I had a small patch of psoriasis on my scalp for 17 years and the joint pain came over the last few years, it started slowly then - bang. I posted earlier in this thread so won't repeat myself... I don't have a problem getting to sleep, but staying asleep for more than a couple of hours at a time is tough. I'm not sure what vicodin is (I'm in the UK and stuff has different names), I'm assuming a painkiller but did you know that some types can affect your sleep? Just a thought... Hope you're not struggling too much - welcome!
KT
I am a sufferer of pa too, right now that is under control the psoriasis has gone nuts though, and the meds are not working for that. When the pa was really bad the rd had me take a mild form of an antidepressant 2 to 3 hrs before bed to help relax my body for sleep it seem to help. I don't take it anymore but I have learned to relax several hours before bed and cut my caffine intake by half, none after 4pm, I get up at 3am for work. I don't like vicoden, it just doesn't agree with me and several people have told me it keeps them awake at night too. Ask the rd maybe he has an alterantive you can take to help with sleep. meme
I'm new to this board. I've always read the posts for informational purposes but didn't have enough experience yet to answer anyone's questions. I was diagnosed in Aug 06 with PA. It took 4 years to find a doc that wouldn't give up on me. I kept going to Orthopedic guys because my knees would swell up and walking was almost unbearable some days. They'd drain 30-40 ccs of fluid from my knees each week. He finally realized after therapy, cartiledge injections, etc. that I had another problem so he sent me to his good friend - a Rheumy. Thank God for him. He put me on Enbrel immediately. What a difference! I went from feeling like I was 90 to feeling like I was 20! I am 45 and about 20 lbs overweight. I immediately lost 26 pounds, my tennis game improved, my scalp problems cleared up and I felt on top of the world. Enbrel worked for me from Aug to Dec then stopped working. Back to feeling 90 again. My skin has flared up again also (elbows and scalp mostly) I'm one those where the internal pain is much worse than the skin. (Neck, back, hips hands and toes) Now he has me on Humira every two weeks. Next Sat is my 4th shot and I still don't feel any better. The more I read here, I see that it takes months to start working. Pretty weird that I felt a difference with Enbrel in 1-2 weeks and Humira takes months. I don't know how much longer I can wait. I get that 20 something feeling again, then it's taken away. I depend heavily on the Celebrex twice a day and I've just finished off my husbands oxycodine or whatever they are for pain. I have the trouble sleeping also. I can go to bed and sleep by 10 pm only when my body is so tired from getting 4 hours a night for so long, I colapse. Anyway, I sure hope this stuff works. I just don't know what else will. My Doc is awesome and from what I hear is tough to get in to see. He tells me not to be discouraged that there is NO failure with this with all the new drugs out and being researched. It's just finding the right one. I hope we ALL find it . . . . .
Welcome Melcat!!!!!