I was diagnosed with RA in 2005 and was previously put on combinations of our commonly known to make you throw up, loose hair type of drugs like Methotrexate, Sulfasalazine, Prednisone etc.. until I was approved by my provincial government for Enbrel. Thank God I also have an extended health plan to pick up 80% of the $1.7K monthly bill.
Anyhow, if you read prior posts, I was on Enbrel for 10 years! It was a miracle drug that gave me my life back. I even had 2 healthy children while taking Enbrel (now ages 8 and 5).
3 years ago, so at the 10 year mark on Enbrel, the efficacy of the drug seemed to have stopped working. At the same time (co-indecently) my Rheumatogist moved and I was switched to a new doctor.
We tried Humira ... worked for a couple years and stopped working
We are now trying Cimiza... not working as well...
Next options given to me are Actemra & Xeljanz.. hmm.. anyone out there tried these?
I was explained that, as I move to more aggressive drugs, the risks increase such as:
Actemra chances of developing shingles = 2% vs Xeljanz chances of developing shingles = 3%. I've also heard of a shingles vaccine? would that counter this?
Then you have disclaimers like these on the Xeljanz Site that offer no Comfort:
"Cancer and immune system problems.XELJANZ/XELJANZ XR may increase your risk of certain cancers by changing the way your immune system works. Lymphoma and other cancers, including skin cancers, have happened in patients taking XELJANZ/XELJANZ XR. Tell your healthcare provider if you have ever had any type of cancer.
Some people who have taken XELJANZ with certain other medicines to prevent kidney transplant rejection have had a problem with certain white blood cells growing out of control (Epstein Barr Virus–associated post-transplant lymphoproliferative disorder)."
In times of flares, world seems darker & hopeless than it really is. But, I must remind myself that there's hope!
TO sort of unpack the questions,
ReplyDelete1. I have used Actemera, not XELJANZ but I have heard that both work well when they work.
2. For me Actemera was not effective. I wish it had been but well who knows with these?
3. Shingles - yes but all of these meds can cause this. I had my first bout when I was 54, I received the older vaccine and have not had it again. However that medication is an older drug made form live bacteria. Generally they will require you to be off of any biologic medication for at least 3 months before you have the older inoculation.
The newer inoculation is not made form live virus and it is more effective and one need not be off one of these biologics in order to have it. You want the newer vaccine.
3. TNF inhibitors tend to have lower life spans the more you use. Usually the first is the most long lasting. Form these they tend to decline in useful time, so your experience is typical I think. I now use Rituxan and have for 4 years it is my 6th biologic, i love it but it is likely a 3rd level after using JAK inhibitors - Actemera or XELJANZ are JAK inhibitors albeit different kinds.
Thanks so much Rick for your reply :) I will talk with my Rheumy about Rituxan. Currently on my 4th month of Xeljanz - its not working very well, so back on the good old Methotrexate - argh.. barf.. Anyhow, please do keep me updated on your journey :) Cheers!
Delete