I was doing great on my double dose of Enbrel....for awhile. Seems my body is now completely overriding it and it's doing nothing.
I'm seeing my doc next Monday, and would like some ideas of what meds to talk to him about.
I've taken Enbrel (currently failing), cannot take Remicade (anaphylactic reaction), have tried Humira, Xeljanz, Simponi (worked for about 10 months), some other biologics I can't remember. Cannot take MTX (tried oral and injection). Cannot take high doses NSAID's due to bleeding tendencies. Plaquenil is out due to the eye issue (I've lost an eye because of PsA). Similarly I can't be on low dose prednisone due to the cataract issue (already have a small one on remaining eye from pred use as a kid).
Am taking Arava without much trouble (currently on), Zanaflex (muscle relaxant) 1/2 pill before bed. These are the only two things helping at this point, and I'm getting about 20% help only.
Is there anything else out there that I'm missing that I haven't tried yet, or some combo someone finds helpful. The more ideas I have to discuss with my dr. the better.
I don’t have any advice, as I can relate…But want you to know you are not alone, and I’m thinking of you…I will follow this thread, to see what other folks have to add. I hope that you have a good day today. That’s what we all hope for. Good luck at the Dr., and please let us know what they say, as well. <3
I wanted to add that gold injections (Solganol) were very effective for me, and put me in remission twice. Apparently it's not available anymore because of business issues, and going out of favor when biologics came on the market.
I read this post earlier as I was getting a remicade infusion. Did not want to get caught dripping and writing.
Ask the doctor about orencia. Your insurance company will probably deny you, but if you have tried everything else, go for the appeal and push it. My doc wanted to try orencia with me, but ins company denied it and I did not want to wait for the appeals process as I had been off biologics because do side effects from humira.
Yup 2 possibilities. Stelera is NOW approved for psoriasis approved elswhere in the world for PsA. and Cimzia.
Cimzia from the phase three trials looks like a wonder drug actually. You should be able to pull it off as it is "tier drug." (one of those if this doesn't and that doesn't work drugs) FDA is just finishin up the "paperwork" for PsA
Both drug companies have VERY active advocacy groups should you get resistance from your insurance company (not likley with your history of "failure"
Great! I will talk to my doc about both of those. Thanks!
tntlamb said:
Yup 2 possibilities. Stelera is NOW approved for psoriasis approved elswhere in the world for PsA. and Cimzia.
Cimzia from the phase three trials looks like a wonder drug actually. You should be able to pull it off as it is "tier drug." (one of those if this doesn't and that doesn't work drugs) FDA is just finishin up the "paperwork" for PsA
Both drug companies have VERY active advocacy groups should you get resistance from your insurance company (not likley with your history of "failure"
I will list some meds might talk to your rheum about:
Stelara, Cimzia, Orencia, Kinaret (though I haven't yet heard of it being used for PsA), Tofacitinib or Apremilast (I can't remember which of them is already approved for RA), and then any of the drug trials.
Thanks Andrew! I've tried Kineret and Tofacitiniib already (did nothing), but not Orencia, Stelara, or Cimzia (tntlamb also suggested the last two). I really hated infusions with Remicade, so want to try Orencia last.
Andrew said:
I will list some meds might talk to your rheum about:
Stelara, Cimzia, Orencia, Kinaret (though I haven't yet heard of it being used for PsA), Tofacitinib or Apremilast (I can't remember which of them is already approved for RA), and then any of the drug trials.
I just saw what Lamb posted. Lamb can you post what you're seeing about Cimzia? It's counter-intuitive to me that it would be any better than the other anti-TNFs, but I'd certainly be very happy to have my intuition be wrong!
Have you looked at what you eat? In particular, by eliminating the foods that have preservatives and chemical additives in them including artificial colours, refined sugars, refined flours, saturated fats and trans fats. Are you getting enough vitamin D from the sun? You need at least 10 minutes of sunshine on at least 10% of your body three times a week. Plenty of information on the net on what foods will boost your immune system and what anti-oxidants will do for your body and what foods will reduce inflammation.
I know you both mean well, but I've had PsA since I was 10 and am 41 now. If there is an alternative treatment, I've done it. Diets, done it. When advice like take more Vitamin D or cut out potatoes is given out to a veteran of this disease, it seems a little condescending, like I was just too clueless to learn those things in the past 31 years.
My doc agreed that Cimzia is a good choice to try. Thank you Lamb and Andrew for suggesting it!
Rheumy was out of samples, so I figured I've be a week without meds by the time I got the Cimzia from the specialty mail order pharmacy Accredo (my insurance requires I use this). Dealing with Accredo has been a total disaster. First they didn't need a prior authorization because I just had one for Enbrel 3 months ago. Then they did (after having the prescription a whole week). Then, when all the billing and P.A. stuff was ready, the system voided my prescription (normal voiding is after 60 days). So the "urgent" request to reactivate the prescription has taken 4 days (ok, I'm counting Sunday, but it's another day without meds). I called today and they MIGHT have it ready to schedule shipping tomorrow. What a mess.
As I was taking Enbrel twice a week, after 2 weeks it's flushed out and Friday started a severe flare. Flares for me are both joints and systemic. I get bone and muscle aches, my sinuses and gums get inflamed, swollen lymph nodes appear in places I'd rather not discuss. Ugh. As long as I'm on a biologic all I have is joint issues (and those are much milder).
Anyway, my husband has send a sternly worded letter to his company's HR department, and they then had words with the insurance provider. I'm hoping something will happen (a few years ago when a similar thing happened, explaining to HR that he was going to have to take medical leave to care for me because THEIR insurance / pharmacy couldn't get their act together made things happen dramatically).
If I ever get the medication, I'll update, and then update how I'm doing on it! Right now it's just a big disaster.
I did my first shot of Cimzia a week ago, and of course can't tell anything yet. I'm glad you shared your experience with Orencia, because I had a terrible reaction to Remicade, and Orencia is one I haven't tried yet, and I put that one till last, as I'm terrified of infusions now. I feel better hearing your story.
If you've only been getting treatment for a year, HANG IN THERE! I know it seems like forever, but once something works, it will be amazing how much better you will feel.
Marietta, so sorry you're having this difficulty. Good luck at the doctor appointment. I'm at the beginning of my treatment and a learning stage I wish I had some helpful info for you.