Hey all! This is Sue Ellen, I am at a loss of what else to do for the inflammation that with the humidty and no biologics has really got out of control. All I am taking is Plaquenil. I have aklosing spond and psoriatic arth and a little RA.
If one cannot take the biologics, what else is there? I am even trying to be more active, trying to do a little on treadmill and lift weights, hoping maybe it will move the inflammation out of my body.
Any ideas? I am in awful pain all the time now.
For most of us to get control of PsA it will take a combination of Bio, DMARD (of which Plaquenil is one mtx is another) and daily NSAID (like Naproxene or Iboprofen). The disease continues to cause damage with or without symptoms. It is likely you need to see your Rheumy again to get better control of your disease and stop damage to your joints and soft tissue.
I was started on plaquenil as my first DMARD, but had MTX added in after a few years, and then switched that to leflunomide. Even if you can't take biologics (any reason why not?), you can be on multiple DMARDs. Can you take NSAIDs?
Like Michael in VT said, most of us get control with a combination of biological, DMARD, and NSAID.
Why can't you take a biologic? If one didn't work, there are many more out there. I've been on one biologic or another for 12 years, and still have one left to try.
The last biologic I was on (Rituxan) caused my liver enzymes to go really high, it was awful vomiting 24 hrs a day. I could not convince my rhy to do a blood test so I went to my primary who is very receptive to my ideas and ordered a drug test and the final outcome was I had drug induced hepatitis. It took over 2 months to get over it (good thing was I lost some weight, but I do not recommend this diet LOL) and then the liver enzymes were more in line as normal.
I have also developed many allergic reactions to meds, such as aspirin, alleve, methotrexate, cymbalta, Arava and the list goes on. My lips swell up and I look like "botox gone bad" or Mick Jagger, then the face swells up too.
I have taken most of the biologics when I first started with the disease Enbrel, Humira, Remicade, etc.. only Remicade worked for a few yrs then it stopped and I tried it again and no results.
So that is the reason the only dmard I am on is Plaquenil, I am ok with it as far as no reactions.
I have had the damage to my joints (2 knee replacements in my early 40s) neck fused in one spot, etc etc.and I know it is still going on, the most painful part is the Si joint in my back; pain dr thinks I have anklosing Spondylitis and seeing the symptoms I am sure I do.
I am rather clueless, it does not seem my liver can handle much and to boot I am on pain meds so that is also metabolized in the liver . I have also done years of cortisone epidural injections in neck and back....
Anywhooooo that is my story :(
oops sorry I have not been online here in a while.
to answer questions on why I cannot take a biologic, it is because of my liver enzymes; they got very high and I was sooo sick, (although lost some weight lol) plus I have taken nearly all of them and only had good results with Remicade then stopped working.
I am not sure what other Dmards are out there that I have not tried, and also I have had some allergic reactions to some like Methotrexate, Sulfasalizine, etc.
I saw my Rhy recently and she had no idea what else to do, just said to keep on the Plaquenil and that is it.
I am not sure either, I so do not want more joint replacement surgeries. I dont know if there is much left that is not replaced LOL
As far as NSAIDS go , Tylenol is about the only one I can take; yep, allergic reactions to aspirin, ibuprofen, big reaction to Alleve...
That is why I am posting, just not sure of anything left that I can do? My pain dr can see my pain has increased but we tried going up in the meds and liver could not handle that either, sooo , just trying to hang on. :)
I dont want to do surgery for a pain pump yet, I just keep hoping and praying that there is something else that can releive the inflammation, so to speak getting to the root of the problem and thereby reducing pain at its source.
What I am planning on doing now is mustering the strength to do water aerobics once it warms up , I dont even know that I can move too well lately but I will try.
part of me also wonders if I should change my rhy? I dont know. Thank you all for your comments and suggestions. Keep them coming!
Sue Ellen