So I just don’t think these drugs are working. I’ve been on simponi and MTX for 9 months and I still have horrible pain in my hands and feet. Yesterday the pain in my hands and wrists was so bad i could barely brush my hair! So I took my weekly dose of MTX last evening and now notice I have three Patches of hives/rash that itch. Going to have to call rheum dr tomorrow and find out if that’s a problem. I just don’t know what else is available. I recall asking the dr and she and the dept head said I’ve been on everything available. Ok… Done ranting. I’m exhausted and going to bed.
Hi Suzanne,
I'm guessing that you've already gone through the other biologics, like Enbrel, Remicade, and so on. I'm so sorry that you're having such trouble and pain. Do talk to the doctor again about what else you can try. If you don't feel like you are getting anywhere with your current doc, try to find someone who will work with you. Wishing you pain-free days!
Well, I was going to start this thread, but since you beat me to it, I’ll just respond to yours! 
Three months of MTX and I can report that I feel worse than ever. I’m tired all the time, spend all weekend sitting in a chair because I have no energy at all, and my psoriasis (skin) is worse than it’s been in years. To top that, I am getting thrush (yeast) around my lips. I think this is probably MTX-related, and will call the rheumy Monday. I had a long-awaited appointment with her last Monday. Drove 80 miles to see her, and she was on vacation. Grrrrrrrr! They said they called everyone. They might have called MOST everyone; they didn’t call me. So now I have to wait until Oct 19 to see her. My joints feel like they are on fire, have to have help with buttons, can barely open a door because of my wrists, cant’ pick up pots and pans because of my elbow, and you know the rest of the list. I’ve said it before: “I’m trying not to let being sick make me feel bad, but…” (I know that’s cynical and sarcastic, but I guess that’s where I am right now.) I completely understand the frustration and the feeling of being torked at this dang illness. Does anybody in the medical field actually understand this disease or are we just shaking gourds (black magic) at it? I envy you that Kenalog shot–those are heaven for me. I’m so sorry you don’t seem to be getting results from it. Hang in there, my friend, you are not alone and you ARE understood!!
Last time I saw my internal medicine doc I was told that my thyroid issues are nog affecting my PsA, but it is gone now and am a little better in dome ways.
My internal med doc has me on morphine slow release twice a day
For the arthritis pain and
I still have some pain. My Reumatologist says he thinks the pain
Is not from the arthritis because he thinks it is better. If that is the case then why do I
Have pain? In my joints?? I wonder too sometimes if the docs are
Guessing/grasping at times. Is there a conference or expert panel on PsA
Anywhere were we could go and see the best???
Byrd Feeder said:
Well, I was going to start this thread, but since you beat me to it, I’ll just respond to yours!Three months of MTX and I can report that I feel worse than ever. I’m tired all the time, spend all weekend sitting in a chair because I have no energy at all, and my psoriasis (skin) is worse than it’s been in years. To top that, I am getting thrush (yeast) around my lips. I think this is probably MTX-related, and will call the rheumy Monday. I had a long-awaited appointment with her last Monday. Drove 80 miles to see her, and she was on vacation. Grrrrrrrr! They said they called everyone. They might have called MOST everyone; they didn’t call me. So now I have to wait until Oct 19 to see her. My joints feel like they are on fire, have to have help with buttons, can barely open a door because of my wrists, cant’ pick up pots and pans because of my elbow, and you know the rest of the list. I’ve said it before: “I’m trying not to let being sick make me feel bad, but…” (I know that’s cynical and sarcastic, but I guess that’s where I am right now.) I completely understand the frustration and the feeling of being torked at this dang illness. Does anybody in the medical field actually understand this disease or are we just shaking gourds (black magic) at it? I envy you that Kenalog shot–those are heaven for me. I’m so sorry you don’t seem to be getting results from it. Hang in there, my friend, you are not alone and you ARE understood!!
I honestly don’t know the answer to that question, Kirsten. It would be a good one to investigate, though, wouldn’t it. I know I’d be willing to go. There is a rheumy in South Africa that has a website and I do write to him sometimes. He seems quite knowledgable and he has given me some good explanations. (He’s always answered me, too!) He publishes his email for people like us. I don’t have his site URL right now…he is Dr. Doc online. Great guy. He’s the one who finally convinced me to try MTX. I asked him if would put his daughter on it and he said he would put anyone in his family on MTX if they had PsA. Kewl guy. I’m drifting here. Yes, we need to find a specialist we can go see. Let’s do work on that! It’s a plan!! Mayo used to have a GREAT rheumy clinic. Maybe they still do?
Thanks for starting this discussion! I have felt as if I have been talking to walls the past couple of years. I have pain literally everyday and there comes a day in the week when mentally I cannot take it anymore; so I break down and cry about it. I have been on morphine now for 4 years and the only time I have had any relief from pain was when I have been in the hospital with morphine injections every 4 hours. I have not been able to get my doctors to understand how much pain there is and in fact feel now like they deliver “lip service” at my annual pain med check. There has got to be a better way to solve the problem of pain with this disease; I see many of the posts are about pain and daily living. I do arthritis yoga each day, which has greatly improved my range of motion in joints and muscles. Doctors told me exercise would help with the pain, but I find it helps because I am focused on the excerise and then the pain ensues. Don’t we all feel better when focusing on the task at hand? I have given up my hope that Remicade would take care of EVERYTHING…my numbers are right where they are supposed to be. So, why do I have all this pain everywhere? Sorry to go on…I am usually doing a good job of covering up my problems. I hope when you find some answers, you’ll share them here. I, too am done ranting and wish you better days with your meds!
Ugh… Totally there with all of you. Thank you for starting this thread. My Remicade gave up on me over the summer, and I start Cimzia on Friday. I’ve already tried Enbrel and Humira before that. I’m wondering what happens when I too have tried them all? I think my MTX is still helping, but the prednisone doesn’t feel like it’s doing anything. I honestly hate taking pain killers because of the mental effects. I wait too long to take them, and then I’m in such pain I can’t sit still and nearly FREAK out. Today I feel so terrible that I feel dizzy from the pain when I try to get up, and I feel like I have no muscle strength, nearly ate it trying to sit on the toilet.
I think you need to consult other Rheumys. My Rheumy said there is ALWAYS something else to try. You may be at the point of needing to go to Mayo or NIH, I’m at UCLA and they’re great! Hives could be from stress over the pain? I know I get them from stress, but also could be an allergy. Yeah, where’s the magic pain helper? I have a few suggestions on my blog if anyone’s interested under “Must haves for PAIN RELIEF”, they at least sooth and take the edge off. http://hurtblogger.tumblr.com/painrelief
Thanks everyone for all the suggestions. I will definitely take a look at your blog Hurtblogger and Anne Marie, I completely understand what you are saying about focusing on the task at hand. I actually find the my most excruciating pain occurs once I get into bed and am trying to relax and go to sleep. It’s very difficult for my mind to notice anything but pain
Hurtblogger said:
Ugh… Totally there with all of you. Thank you for starting this thread. My Remicade gave up on me over the summer, and I start Cimzia on Friday. I’ve already tried Enbrel and Humira before that. I’m wondering what happens when I too have tried them all? I think my MTX is still helping, but the prednisone doesn’t feel like it’s doing anything. I honestly hate taking pain killers because of the mental effects. I wait too long to take them, and then I’m in such pain I can’t sit still and nearly FREAK out. Today I feel so terrible that I feel dizzy from the pain when I try to get up, and I feel like I have no muscle strength, nearly ate it trying to sit on the toilet.
I think you need to consult other Rheumys. My Rheumy said there is ALWAYS something else to try. You may be at the point of needing to go to Mayo or NIH, I’m at UCLA and they’re great! Hives could be from stress over the pain? I know I get them from stress, but also could be an allergy. Yeah, where’s the magic pain helper? I have a few suggestions on my blog if anyone’s interested under “Must haves for PAIN RELIEF”, they at least sooth and take the edge off. http://hurtblogger.tumblr.com/painrelief
Completely agree with you Suzanne. My husband often asks, “why do you cry when you go to bed some nights?”. Were you able to see the doctor about the rashes? Hope that is nothing serious. Have a great day!
Thankfully the rash cleared up before my most recent MTX dose. I left a message with the Dr. and they asked me the usual questions, “are you having trouble breathing…are you experiencing night sweats…excessive coughing…” of which Ive not had (thankfully!!), so she told me to take next dose (which was yesterday) and see if it occurs again. Could be a fluke, or maybe not related to the MTX at all. Trying to keep track of foods I eat., since maybe its an allergy? I need something else to add to the list, right? LOL!
Glad to hear nothing serious...will hope that continues to be the case. Keep in touch when your next MTX dose is and what happens.
Suzanne Hall said:
Thankfully the rash cleared up before my most recent MTX dose. I left a message with the Dr. and they asked me the usual questions, "are you having trouble breathing....are you experiencing night sweats...excessive coughing..." of which Ive not had (thankfully!!), so she told me to take next dose (which was yesterday) and see if it occurs again. Could be a fluke, or maybe not related to the MTX at all. Trying to keep track of foods I eat., since maybe its an allergy? I need something else to add to the list, right? LOL!