My doc and I pulled the plug on Taltz after 9 months. So I have now tried Enbrel, Cosentyx, Humari, and Taltz. We are going to try Tremfya because it goes after IL-23, and a few others. My doc said if this doesn’t help, and he is running out of ideas, (in 6 to 12 months) he will go to an infusion of a TNF. He is afraid the prefilled syringes are not enough for my size. At 6 '5" and 300 lbs+, he is thinking the dosing is not enough because we see some improvement, but never enough. I went to Humaria every week too, The infusion would be based on my weight. I think he is on the right track.
Not being able to take methotrexate, Tylenol, or Advil(et. al), I have nothing for inflammation. My liver and kidney numbers are not 100%. I can deal with the pain with a little help from pain meds, but I still have the terrible underlying inflammation when I am in a lot of pain, which is most of the time. When I am hurting a lot, my fever runs 100 to 101F constantly for a week or more and that saps my energy. I can’t work when I need to sleep 12 to 14 hour day. And 100F is over 3 degrees for me because my normal body temp is 97.6F.
Wish me luck. I’ll keep everyone posted.
I’m glad that your doctor is thinking of next steps. Infusions make a ton of sense because the dosage can be better adjusted to size.
I think your doc makes a fair point about your size, I’m half your size and found with Stelara I needed double dose before I started to see results (not enough unfortunately, but the normal dose was way too small). Some of us seem to just need higher doses. I don’t seem to get any more immunosuppressed as a result - have never had more infections when using extra biologics.
As I am now on my last, we are talking about taking two different ones at the same time when this one starts to fail (though I may get a reset to my immune system by then, so we’ll see how that goes).
I think that you are possibly on a good track with Tremfya, I hope it works. I don’t know why all meds aren’t prescribed by weight, many may be under dosed and the meds aren’t really given a proper chance. This has some good info. JAK Inhibitors: Uses, Drug Options, and Side Effects
So sorry you are in pain. Have you tried any DMARDs? I’m taking Taltz now and I’m flaring often. Did you have any side effects with Taltz?
Very interesting - getting double doses. My docs have never discussed that as an option.
It was my GI doc - I’m not sure they do it for arthritis (risk vs outcome). Even then it was a special compassionate dose that the makers of Stelara basically donate - not funded like the standard dose by our government funded insurance system.
No big SEs with Taltz, other than the shot burned like hell.
The first med I did was Otezla. My liver and kidneys are not 100%, so I have to be careful with anti-inflammatorys. Basically, I can’t have any!
Doc said if Tremfya doesn’t help enough he will move to a TNF infusion so he can dose by weight.
Thanks everyone for checking on me. I am holding my breath to see if the Tremfya is going to help.
I sent my doc and email this weekend and asked if there was anything or anyone else I could see to get my through (hopefully temporary) pain I am in right now. I told him daily roids were not an option but I would welcome a shot.
The enthesitis in my large muscles in my back is really bad. The pain is enough I can;t sleep or do much of anything. Sitting at my computer daily is becoming gruesome.
Hope things are looking up for you! I am also on Tremfya and I have had good results so far.
If I recall correctly, you were trying cold therapy. Was it successful enough for you to reconsider it?
The cryo therapy does work well for moderate back pain due to muscle inflammation. Right now my back problems are way beyond moderate! I got a steroid shot yesterday for it. I hope it brings it back down to manageable.
Fingers crossed for you for the steroid shot, well past time you got a break
I had my second dose of Tremfya yesterday. Now it will be every 8 weeks. I am holding my breath.
The steroid shot helped me get over the hump.
For anyone else taking Tremfya. Have you noticed what I call water brain the day after? Today my brain feels slugish. That is the only way I know to put it.