Stelara for GCA

[Aleish]

My doctor wants to try Stelara biologic shots for my treatment because I was no longer able to continue Actemra when I got dividiculitis. Some small studies have shown promise in GCA. She would try and get me approved for it based on a previous diagnosis of psoriatic arthritis . I really don’t think I had psoriatic arthritis because I never felt better when she had me on Humara, but if it will be a way to get on the Stelara I will accept it. Since I had to go off the Actemra I’m worse unless we raise the prednisone much higher. I’m on 5 mgs and I have terrible side effects at higher doses. Has anyone with GCA/PMR, in this group been prescribed Stelara? I’m going out of my mind from the pain and disability I deal with. My depression is terrible and I’m game for whatever at this time.

[PMRpro Ambassador]

It has only been used in a very small prospective trial in Dublin:

ncbi.nlm.nih.gov/pubmed/297...

medpagetoday.com/rheumatolo...

It works on different inflammatory substances to Actemra - there is evidence that GCA isn't caused by just one pathway and that is probably why about half of the subjects during the clinical trials didn't entirely get off pred.

Something at the back of my mind says that I have come across one person who was going to try it but whether they did or not I don't know.

If she can get funding - it may well be worth a try. You can always stop if it doesn't work.

[SheffieldJane]

I would give it a go as you are suffering so much Aleish. Possibly, your depression although a normal reaction to chronic suffering, needs separate attention. It makes everything so much bleaker. Take care! 🌸

[Aleish in reply to SheffieldJane]

I am feeling so much pain everywhere. My bladder pressure is awful and my lower back, shoulders and stomach all hurt. I feel lost and hopeless. Think that none of the symptoms are getting proper treatment. I need to sort this out.

[SheffieldJane in reply to Aleish]

Your doctors need to sort this out! If you take a note of what you have told us and give it to the doctor, you might start to get somewhere. I felt like I was going crazy until I got my PMR diagnosis, then suddenly everything fell into place, thanks to one young doctor who properly listened. Let us know what happens. X

[Aleish in reply to SheffieldJane]

I tested possibly for Lupus. I’m convinced it is part of the vasculitis. Tonight I’m going to a hospital support group for Lupus patients. I will at least find good doc names. I also emailed my current physician with my symptoms and requested that she add some other tests on my current requisition for labs. I’m 75 and I’m solo at gathering my care. I do have a son but he is not available to come to my aid. Husband still drives me but since his cerebral hemorrhage his brain power is diminished. No friends where I live. Been too ill to make any since the last two died and one moved away. I’m on my own when it comes to medical research.

[SheffieldJane in reply to Aleish]

Well done for having the courage to join a group. My money is on you beating this Aleish. If truth be told, even surrounded by people, I think most of us feel quite isolated. That’s why the forum and all the lovely people on it is such a blessing!

[Aleish in reply to SheffieldJane]

This is the most wonderful group and thank you Jane for being here for us. 💕

[EmmaLaura]

I had terrible side effects from prednisone, especially bruising and gashes due to skin fragility. It was necessary for quite awhile

With GCA symptoms, I had 3 days of IV prednisone to save my eyesight. I tried actemra. Didn’t do much if anything. Now on 1 mg prednisone daily, two aspirin AFTER a meal , daily, for pain and inflammation.

I had a back fracture issue too which resolved with one numbing injection and the two aspirin.

At some point, I became unwilling to continue the usual meds due to side effects and becoming tired of them.

[Kmv446]

I too was on Actemra in an effort to wean off of a 2 year stint of prednisone. (No luck with methotrexate & plaquenil). 6 months on Actemra prednisone free for 30 days feeling good then Bam hit with diverticulitis. ( No history of gut problems if anything diet probably better) ; 8 days on out patient antibiotics no relief, 4 nights hospital IV antibiotics sent home with additional 7 days of antibiotics. Coincidence? I’m thinking not.

Crazy part labs now normal (sed & crp). Still aching & fatigued. Never really had diagnosis PMR/GCA vasculitis ???? Prednisone masking test. Only 58 yrs old feel and move like I’m 80. Thanks to diverticulitis No more drugs for me will live with aches for a while; colon resection not appealing.

[Aleish in reply to Kmv446]

Dividiculitis is listed as a side effect. I’m going to probably go on Orencia soon because I can’t live without a biologic. Toooo much pain.