Hi there, I hope all of you are doing well (considering PsA). Thank you in advance for reading/listening to my story... I'm wondering if I could get any insight/advice into what I'm experiencing.
I'm a 25 year old male & I was diagnosed about two months ago with psoriasis, ranging exclusively from my perinium to my tailbone. At the time I had a very physically demanding (50-60 hour/week) job that I previously had no problem with. When the psoriasis hit (the first non-dermatologist doctor misdiagnosed it as a fungal infection), the constant chaffing of the affected areas made it so bad that it was bleeding every night & I had to walk with a limp... After two weeks of extreme itching and pain, I couldn't stand it any more and I quit my job.
Fast forward to a month later & I realized I was having some aches in my fingers which were making it much more difficult to play some basic exercises on the guitar that I could easily breeze through normally (It didn't hurt too bad, but the muscle memory/coordination was diminished and my fingers were stiff). I assumed it was a temporary injury from my previous job that would go away within a month or so (I now wake up with very stiff fingers). Then a few days later it wasn't just my fingers, but my wrists... And then my elbows, knees, back, shoulders, and now on my ankles & the upper soles of my feet. To top it all off, I have an incredibly HUGE fatigue that doesn't go away. I took a nap that lasted several hours the other day & woke up still exhausted. The constant exhaustion and aches are really playing a number on my mood; It's hard for me not to be cranky & people pick up on it.
I'm concerned that I have psoriatic arthritis... The aching pain in my joints is becoming unbearable. Not in the sense that the pain itself is excruciating, but that it is a constant low-medium ache/pain that NEVER stops. It's relentless. When it's really bad, I cannot stand up for more than 10 minutes without having to kneel, sit or lay down. It's been a little better these past two days, but I've been popping twice as many pills. I'm currently taking 2 ibuprofen 4 times a day, some aspirin, advil & tylonol.
My dermatologist has recommended that I see a rheumatologist, and the soonest they can see me is in a week. Anyway, does this sound like psoriatic arthritis, or could it be something else? I do NOT have psoriasis or redness (not that I notice) above the joints that are experiencing the aches (pretty much everywhere), but I still have low-mild psoriasis around the tailbone & perinium areas. My nails seem to be fine. Any suggestions on medications I should ask the rheumotologist about or ways of dealing with this... If it even is PsA? I've heard the side effects of some of these drugs can be pretty bad; I'd like to avoid them if at all possible.
Sorry for such a long post & thanks a lot for any info/advice.
Unfortunately, this sounds very much like PsA. It is not necessary to have Psoriasis around affected joints, and it is possible to have PsA with no active P, but only nail changes. It's GREAT that you can get in to see a rheumatologist so quickly. There will probably be some blood tests and joint exam (consisting of the dr. moving your joints around and feeling them). There is not positive test for PsA, but blood tests and a physical exam gives the dr. the best guess for what is going on. Some people's bloodwork will show normal, some will show elevated inflammation markers.
There are may medications for PsA, and most insurance companies have a protocol of a patient trying, and "faling" certain medications before they will pay for more expensive ones. "Failing" a medication means that either it doesn't work, or side effects were too severe to continue.
Your doc may offer prednisone (to be taken as a short term treatment ONLY, long term can weaken your bones and cause other problems), high doses of NSAID's (ibuprofen and the like), or something like methotrexate. The biologic class of meds (Enbrel, Humira, etc) are very expensive, but can work very well and induce remission sometimes, especially when a diagnosed person gets on a biologic quickly.
Remission happens when a person has very very few symptoms of PsA while on a medication. Some people can stop taking medication during a remission, but most have to continue for the remission to continue.
Best wishes, and if you have more questions, post away! I was dx with PsA at age 10, I'm 41 now, and know how tough it is to be young and have your body stop working well.
it sounds like psa to me, but I'm not a professional. do you have finger/toenail involvement?
There are experienced people on this site, who will give you better feedback. Ive been on humira, methotrexate and steroids, which have helped me with no side effects. i wish you well and hope you find comfort here on this site as I have.
lamb, thats interesting you say medicaid does not help with medication. i work full time and just applied for medical assistance to help offset cost of copays,medication etc. im guessing ill be denied or will still have to pay out of pocket my rheumy does not accept any medical assistance.
medicaid supplys a limited number of medications for adults, under some pretty stringent conditions. Its not that they won't pay for biologicals, its just hard......
Reading your post a few things stood out. Check your over the counter meds with a pharmacy to be sure your not double dosing the same thing. Ibuprofen and motrin are the same and in the same family as asprin.
Also keep in mind that symptoms are guidelines, not everyone has them all. Follow your Derm's referral and get to a rheumy to get a better idea of what your dealing with whether it is PsA or not.
In my case I don't have ANY psorasis or nail involvement. What I do have is a family history of PsA, joint pain and stiffness, and after years of my symptoms I was finally sent for xrays. They found "erosions" on my hand films. Then the blood test for HLAB27 which was +. I have had pain and stiffness for about 10 years. Still no psorasis lesions on my skin...(if that never developed it would be ok with me)
From what I have read many people experience their PsA develop in similiar but not identical fashion. The reason I mention this is that many patients don't have the classic symptoms or skin disease. Your description sounds like it's PsA...I hope you get the treatment you need. And I am sorry that you have this at such a young age.
I've never had any nail issues, either, Honey...And mine is definitely inherited from my Mom. Like Ryan, I have trouble with my wrists and thumbs, but even moreso is the pain in my Achilles. It's a good thing you're heading in for an opinion from a rheumatologist.
HoneyBunny said:
Reading your post a few things stood out. Check your over the counter meds with a pharmacy to be sure your not double dosing the same thing. Ibuprofen and motrin are the same and in the same family as asprin.
Also keep in mind that symptoms are guidelines, not everyone has them all. Follow your Derm's referral and get to a rheumy to get a better idea of what your dealing with whether it is PsA or not.
In my case I don't have ANY psorasis or nail involvement. What I do have is a family history of PsA, joint pain and stiffness, and after years of my symptoms I was finally sent for xrays. They found "erosions" on my hand films. Then the blood test for HLAB27 which was +. I have had pain and stiffness for about 10 years. Still no psorasis lesions on my skin...(if that never developed it would be ok with me)
From what I have read many people experience their PsA develop in similiar but not identical fashion. The reason I mention this is that many patients don't have the classic symptoms or skin disease. Your description sounds like it's PsA...I hope you get the treatment you need. And I am sorry that you have this at such a young age.
Thank you all so very much for the replies & the information. I will take all of it to heart. Unfortunately, it's now so bad that I can't stand up for more than about 5 minutes at a time. On the good side, I was able to get bumped sooner to Thursday to see the rheumatologist who is covered under my insurance. What a bizarre experience it is (as you all know) going from leading a physically active lifestyle of hiking, biking, weight lifting, having a physically demanding job, etc... To not being able to order a sandwich at a deli without having to sit down. <------ Which was actually my only outing these past several days. I'm definitely bedridden until I can force my body to go see the rheumatologist. It's surreal. Anyway, thank you all so much! What a great community/group of people you are.
I don't mean to be the dissenting voice, but its sounds like lymes or reactive arthritis (especially reactive arthritis) to me. Reactive also include several bacterial or fungal arthritis-es. And YES psoriasis can be aggravated by arthritis.
Inverse psoriasis can be caused by a number of things....
So glad you are getting in to the rheumatologist soon Ryan. My PsA hit me in a similar way. I had an intermittently stiff finger for about a year prior to dx, then WHAM, I was literally running around one day and the next I could barely move, and it got worse from there until I couldn't move anything. I hope you can get on some meds that help quickly, at least to get the inflammation down and help with the pain. Hang in there!
Ryan said:
Thank you all so very much for the replies & the information. I will take all of it to heart. Unfortunately, it's now so bad that I can't stand up for more than about 5 minutes at a time. On the good side, I was able to get bumped sooner to Thursday to see the rheumatologist who is covered under my insurance. What a bizarre experience it is
Thank you, once again, for all of the replies/support. This is a great website & group of people. I was in really bad shape two days ago (My father caught me lying on the floor in pain), and was about to call 911. Instead, the rheumatologist was able to see me sooner. He examined my joints thoroughly, took urine & blood samples which they'll be running a dozen tests on. He also gave me two steroid injections which have reduced the pain, but I still can't stand for more than 5 minutes... I'm now using a cane to walk around the house. The steroids have really been affecting my mood... I go from neutral, to sad, to angry quickly & without reason. I hope the diagnosis medications won't do that... I'm eager to know the diagnosis, whether it's PsA, lymes, MS(?), reactive arthritis like tntlamb mentioned, or what... I had the feeling the rheumatologist was leaning towards PsA. Anyway, I thought I'd document/post here what steps I've been going through in case someone else who has these symptoms visits this page, not to mention for the emotional support you've all been giving me. It does make it easier knowing that people have been through this before. Thanks again... I'll post once I know a diagnosis. Best wishes, Ryan
Glad you got to the see the rheumy Ryan! Hopefully you'll have some answers soon. Most of us have needed canes at some point (and the need for canes can come and go). With treatment, you hopefully won't continue having to hobble around the house (or end up on the floor!). Keep hanging in there, it's tough to be young and dealing with so much sudden disability. Sounds like you've got your dad around, so you're not alone dealing with this.
Hey guys, hope you're having a relatively good day.
Finally, an update, although it isn't one I was expecting: All the tests came back fine... The rheumatologist said he didn't think I have PsA, lymes, MS, reactive arthritis, etc... So the rheumatologist sent me to a neurologist. The neurologist was great, spent over an hour with me, but said I didn't have any neurological disorder. So, apparently they'll be trying fibromyalgia medications on me? I have no idea what this is, but the pain never stops, and it seems localized exclusively to my joints... Then again, I ache all over & it is hard to tell sometimes, but when I use my hand to follow back to the body part in pain, my hand always ends up at my joints, small and large.
Once again, my symptoms are deep aching/pain all over the joints of my body + an incredible exhaustion. I can't stand up for more than 5 minutes from the pain & I'm now using a cane to walk... Very, very slowly. I haven't been able to leave the house, much less walk outside, in 2 weeks (Took my all going to see the doctors). I savor the morning, because although my fingers/body are stiff, I have some rest/relief as opposed to the hell I go through in the evenings.
I really don't want to go on disability... I REALLY just want to get better and work hard. I was working hard in my career, of which in 10 years down the road I'd be making 10K+ a month. How am I supposed to accept this and live on 10K a YEAR on disability? Maybe I should just fight through the pain and act as if nothing's wrong? ...But the pain and exhaustion never end, as you all know with PsA.
It's really frustrating... Anyway, thank you all for listening & for any advice you may have (And thanks tons to all the previous posters. I truly appreciate you taking the time).
Just a thought. You said all of the tests came back fine. Psoriatic arthritis can be sero-negative. My blood work comes up nearly completely normal, other a mild anemia. Yet PsA is exactly what I have.
I'm wondering how they came up with ruling it out on the basis of negative blood tests? Have they tried you on a course of steroids to see what happens?
FIBRO?????????????????????? In a 20 something guy???? You have got to be chitin me, what are the chances of that?I'm with Stoney a course of predi may make more sense. Granted you may not have a family history for some of the arthritis things but, you are too young to write off with that DX...........
I agree, I wouldn't go by just blood test. I would ask for a bone scan also. That was my very first test, though I had visual signs of psoriasis. I, too, had no known family history of this disease at the time of diagnosis. After consulting with family members they believe my dad had psoriasis, which went untreated or diagnosed. Steroids would be a good idea too.
My blood tests make me look like a perfectly healthy person. Blood tests do not make or break a PsA (or RA or other arthritis) dx. Fibro makes NO SENSE. It is often a throwaway dx by someone who doesn't know where else to categorize a patient. I can't understand why you're not getting AT LEAST a course of prednisone which costs almost nothing and is a very rapid indicator of inflammation (if you improve, you had inflammation).
Honestly, you need to get to another rheumy, AND in the meantime get to a general practitioner and get some prednisone as a trial. At this point, you need to take the bull by the horns and NOT accept this fibro dx. I can't imagine what this guy was thinking.
When I hear stories of rheumy's like this steam comes out of my ears. They should not be practicing. Fibro in a 25yo guy with these symptoms....(insert bad words)
Oh Ryan, My empathy goes put to you. I agree with the idea ask your family Doc. for a referral to another to another Rheumy. Most people go thru a few to get a good one.