I am new to the board and glad I found it. I was diagnosed with PSA in October but symptoms started last april. The pain and stiffness is really starting to increase in severity. My shoulders, neck, back and legs hurt every day. Been frustrating and a little depressing because I used to be very active and now find myself struggling to stay awake and focused.
At this point I have only taken glucosamine and ibuprofen, providing very little relief. I have been very hesitant taking Humira or Enbrel because they supress the immune system but I am really affraid of not getting this under control. I read that a Gluten free diet can help but haven't noticed anything.
Can those who are on Humira or Enbrel share their experience with this medication? Have you noticed significant relief? Any significant side effects? Any other medications or supplements that are proving helpful?
I really appreciate any feedback. Right now I feel totally lost on what to do next, I just want to get some releif from the pain!!
Enbrel did not work for me but Remicade is so far a God send. It does not make me pain free but helps with fatigue and ales tge pain bearable
without narcotics. I would take it again, and will as long as it works, as it has given me my life back.
I did get food allergy testing done and the strongest allergen was whey. Which is in everything. Cutting that out as much as possible
has made a difference as well. Also omega 3 concentrated and
turmeric.
I was incredibly reluctant to take any medication - I hadn't taken more than ibuprofen for years, even though I was in constant pain. Both my rheumatologist and naturopathic doctor told me I needed to start a TNF inhibitor because between the overly aggressive PsA and AS, the damage being done to my joints was getting worse, and quickly (more damage seen each time I was x-rayed over a period of 8 months).
I'm now on Enbrel. I'll take my 10th dose tomorrow. I have mobility in both ankles now - one was nearly completely frozen. I can move toes that were previously frozen. My hands have shown great improvement. I still experience chronic pain from the damage that's already been done (fused SI joints and such). I take tramadol for pain as needed, but am reluctant to take as much as I should because I don't want to build up a tolerance and at this point it's the only pain med I can take due to liver issues.
I, too, was afraid of the immune system issues, but things seem to be going fine. I have five homeschooled kids (we're out and about a lot, homeschool co-op, etc.) and babysit 3 other kids (who always seem to have runny noses) and right now I have a sore throat (one of my kids is SICK) but other than that every illness has passed me by.
Mine started around the same time as yours (in February of last year) and I was also diagnosed in October. My doctor started me on Celebrex before my diagnosis by the rheumotologist. That helped some, kind of took the edge off the pain a little. My rheumy started me on Simponi at the end of October. i didn't get immediate relief, but some slow steady improvement. It's hasn't gotten me the whole way, however, and tended to wear off before the next shot - so she started me on methotrexate last week. so far so good. The last couple of days I've barely had any pain at all, it's been fantastic!
I know that the medications sound scary, but honestly, you also have to consider the repercussions if you don't address the disease as early as you can. If you wait too long there may be damage that could have been avoided and can't be fixed. It also may take awhile for your doc to find the right combination that will work for you.