I was diagnosed with RA back in April of 2012 and given Methotrexate injectable, Folic Acid and hydroxychloriquine. I did the injectable for a few months but then couldn't bring myself to do them anymore. So they switched me to the tablets. I take 7 each week, but don't think they do much. After I started back to work in January after being off for 3 years, I started to get psoriasis on my elbows and hands between the fingers. At my last visit my diagnosis was changed to PsA and I was taken off the hydroxychloriquine. I took Pred for almost a year, but the doctor weaned me off of it several months back. I was told I could only take Tylenol, but I have seen other posts where people are on Celebrex, Voltaren and some other pain meds.
My hands are killing me now! The joints hurt so bad - they are painful to the touch. In the morning I can barely move my fingers and they don't start to ease up for several hours. I called my doctor and the nurse said he told her he didn't know what to I do with me. Can you believe it? He's the rheumatologist - he is the one who is supposed to help me control the pain and inflammation. I also noticed a bump starting to appear on my ring finger of my left hand. Am I wrong to assume that he should be helping me? Sorry if I appear to be a bit angry, but I am only 53 and have been in pain for quite a while now. And I had to go back to work which totally exacerbates the problem. I also have degenerative disc disease and a torn meniscus that both need surgery. But with all this inflammation I doubt that will happen anytime soon. Oh joy!
Does anyone have any helpful hints of dealing with this hand pain? I take a hot shower every day to loosen up my hands and fingers. I can barely touch the joints on some fingers they are so painful. I have also asked my GP to refer me to a hand specialist and maybe another rheumatologist for a 2nd opinion. Trouble is I have a HMO and they are limited. My PsA doc is the only one I can see on the plan.
Thanks for listening - only people who have gone thru this nightmare can relate - other people just think you are whining about nothing...
Welcome to the group NYazz! I take plaquenil, but I'm not surprised you were taken off. . . .It can lead to an increase in psoriasis. It sounds like you are making the right moves, including seeing a hand specialist and a second opinion. You mentioned pain meds, but there are really a few different categories. More important to an inflammatory disease are the NSAIDs. Tylenol will help with pain, but does nothing for inflammation. Unless you can't take NSAIDs, this is definitely something to bring up. I've been on one or another for almost 6 years now.
If you have morning stiffness that lasts a few hours than your disease is NOT under control. It sounds like you need to speak with your doctor about stepping it up a notch. If the MTX isn't working, there are other DMARDs, including leflunomide. The next step would be a biologic, and it sounds like you should be a candidate for this. I would recommend being very proactive, especially since it sounds as though your doctor isn't treating aggressively enough.
Believe it or not, they are telling you the truth. Unless you have an extensive history of psoriasis there is little they can do right now. In a strange quirk of fate many of the meds used to treat PsA can cause psoriasis as Stoney pointed out. Its unusual for it to pop up while on MTX. You can't take predi right now as it causes psoriasis. You can't take the pain meds because they do not treat the disease and will mask symptoms. (not to mention make future treatment very difficult.
EVERBODY over the age of 50 has degenerative disc disease. Before you even consider surgery, make sure your inflamation is under control, you have a clear Dx and two non surgeons confirm a loss of function and need for immediate surgery. The odds of any pain relief from surgery are slightly less than pain relief without surgery. I assume you have been in PT for these problems? If you haven't been get some. More important with this disease than anything is moving.
You do need to call your doc first thing. Make SURE he said Tylenol. Not aleve, ibiprofen etc. Its VERY unusual to use tylenol along side MTX. I can see it short term.
Also ask him about the lumps. That isn't common with PsA but when it does needs attention.
I'm not quite sure how to sugar coat this, this so I 'll just say it. You need to go to work on that needle thing. If you don't get past it, you pretty much are getting all the treatment you can. Every drug moving forward involves needles. You perhaps can go to pain management at some point but pain management will not restore function, it will just take a piece of life from you at a time.
It WILL be okay. It takes time. They need to figure out the Psoriasis first. That will take several months. In the meantime get moving. Yeah it hurts (at first, but it gets better)
I'm totally confused. Why is your doctor saying he can't do anything if he hasn't even put you on the best medicines yet for your disease? The biologics actually work. The other DMARDS kind-of, sort-of work sometimes. They're tried first because they're cheap.
Is your doctor not mentioning them because you can't tolerate taking shots? Sure they hurt a bit, but the pain is way less than the pain from the disease. Since I've been on a biologic, I can't tell you if I even have PsA anymore. I have no issues at all.
Second what Andrew said. Your doc has barely touched the tip of the iceberg in terms of treatment. Why is he saying he can't do anything else? Makes no sense to me.
Andrew said:
I'm totally confused. Why is your doctor saying he can't do anything if he hasn't even put you on the best medicines yet for your disease? The biologics actually work. The other DMARDS kind-of, sort-of work sometimes. They're tried first because they're cheap.
Is your doctor not mentioning them because you can't tolerate taking shots? Sure they hurt a bit, but the pain is way less than the pain from the disease. Since I've been on a biologic, I can't tell you if I even have PsA anymore. I have no issues at all.
Welcome NYazz! This is a great forum to find help and support. I'm sorry I can't help you with any advice about your hands because I don't have pain in my hands. I do however, think you should find a new rheumy - how awful to say he doesn't know what to do with you ! I know what you should do with him . . . . !
wow, i can so empathize with the hand pain. i have similar problems but i am in the early stages of psA and fear that i am headed on the same path you have trodden. I started out with the tablet form of MTX and it has done really well with most of the symptoms, save a periodic flareup here and there. For the hands however, it hasnt done much of anything. And all my work is done with my hands. The way you describe you symptoms(painful to the touch) matches mine exactly. Good luck and keep me informed how things work out.
Thank you everyone for your support and information. I called my GP and am waiting for the HMO to approve a second opinion. Of course that could take a week or so. My psoriasis isn't that bad, just a little bit on my elbows, and some between my fingers. But my fingers and hands hurt the worst - swollen and painful joints that take several hours to calm down. During the day if I keep busy I am sorta ok, but the minute I stop when I go home it just gets worse. The rest of my body aches, but I can almost deal with that. I work full time as a receptionist at an animal hospital which means lots of writing and computer work. Unfortunately my bills won't pay themselves, so I do have to work.
So in the meantime I will try and wait patiently until I can see another rheumy and hope I can get this under control soon. Waking up every morning without the use of my hands is getting old real quick! :)