So, after 20 years of lower back pain, two knee arthroscopies, bouts of iritis, cortisone injections to a hip, years of what I was told was IBS, MGUS, and pityraisis lichenoides, a rheumotologist has put the puzzle pieces together. I have been diagnosed with PsA and ankylosing spondylitis. He presently has me on 75mg/day of indomethicin, 2 mg/daily of folic acid, and I just started weekly methotrexate (10 mg to begin with). He wants to start me shortly on Remicade infusions. I will admit that all of this is scaring the living daylights out of me. So far, not much for side effects from the meds. I get a bit fuzzy about an hour after the indomethicin but that goes away. Fell asleep about 90 minutes after the MTX but no nausea. This is probably a pretty wide ranging question, but what the heck can I expect in the future? What types of reactions have you folks had to these strong meds? I would like to get some excersize (used to do 30 minutes a day on an Airdyne) but I don't want to aggrevate anything. Do any of you use workout equipment? What type of quality of life can I look forward to? Thanks for any helpor advice that you can provide.
Welcome, Sherm. You are in the right place. I am new here myself. It sounds like you've gotten some great news. There is treatment for PsA and AS and your dr. wants to prescribe treatment for you. I believe that your quality of life is going to go way up in a month or two as the meds take effect and the inflammation dissipates. I've been on high dose methotexate for about 7 years now. No side effects that I notice. All of the lotions, gels, shots, etc. never really helped me much. Heat and cold therapy are my 2 best friends. I haven't been able to work out in over a year and a half, but I'm starting Enbrel tomorrow and I expect to be at the gym or outside in the next 4 weeks. Though autoimmune diseases are progressive, I think you have great prospects of good quality of life.
Welcome, Sherm!
PsA is different for everyone, so it's difficult to give you a layout of what your future with PsA looks like.
For me (Psa/spondylitis), I improved on Enbrel, and improved significantly on Remicade. I need to balance activity and rest in order to make it through the day, even when on meds. I don't work out, but do enjoy hiking, which I was just getting back into when I had to go off meds due to complications.
Hi, there from your neighbor, Illinois, and from Chicago!
I'm similar to your history except the eye problems, but i did have CONGENITAL cataracts removed 10 yrs ago...my miracle surgery
had the scopes on knees, had the knee replacements, have the back problems, and refusing a back fusion of L4-S1
When i am like Nym, off my meds, it's the worst. I don't have a prob with Mtx, been on it 17 yrs. If i am offa it, OMG.
It's the worst pain i ever get...seems like deep tendon pain, all over
so when things are controlled, life is pretty good. I can mall walk for exercise, do my Schwinn Aerodyne bike, lift 3 lb weight. I'm on Remicade, i got my infusion today...Sometimes, not to scare you, i can't go easily , it wears off, before the next one, i get it every 6 weeks.
Don't let me scare you..it could be the midwest weather, cold at night now!....it's changing a lot, the weather, typical for here...I did take 3 days of prednisone, and luckily got off. I can't swim well for exercise , so housework , walking i am starting to do more of that. Now that i got my Remicade, hope i am doing good for a month
so when you get in a "controlled remission with meds", your feeling good, got energy back, fatique down, with the meds
BTW Mtx has been around a long time...and we got biologics, enbrel around 1999?.......so it was pretty hard before that, and facing deformities
Don't have the side affects, and i have been on biologics, like remicade/humira/enbrel/rituxan for 12 yrs
If i didn't take these meds, i was told i would be in a wheelchair...so to me, more risks of problems with joints, without meds...than from the meds..Just my opinion
KEEP THE HOPE ALIVE!!!!!!
It gets better, I have been on MTX since last December and Humira since April and that was the turning point for me. Ankle, foot and shoulder pain are almost non existant and swelling is about 10% of what it was...
Thanks for all of the information. I was wondering if any of you take any pain meds? I'm not a big fan of taking ANY meds, but some of this pain is pretty intense. Did your docs give you any prescriptions?
Hi Sherm! prescriptions for the pain, which do not deal with the arthritis itself, are usually in 2 camps: NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) and pain medication. The NSAIDs only help reduce the inflammation which then should lessen the pain.The indomethacin you are taking is a NSAID. The medications for pain vary greatly. The prescription I take is tramadol.
I agree with xvanex on the meds. I take meloxicam for an NSAID. I bruise badly on the full dose, so I only take the full dose when I'm really hurting. Tramadol is a miracle pain med. It only helps moderate pain, not severe, and lasts fromt 4-6 hours. There are less side effects than common narcotics. I take one on bad days. It is a prescription drug.
xvanex said:
Hi Sherm! prescriptions for the pain, which do not deal with the arthritis itself, are usually in 2 camps: NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) and pain medication. The NSAIDs only help reduce the inflammation which then should lessen the pain.The indomethacin you are taking is a NSAID. The medications for pain vary greatly. The prescription I take is tramadol.