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Ongoing jaw pain in established GCA/PMR patient
Polymyalgia Rheumatica (PMR) | Last Active: 5 days ago | Replies (18)Comment receiving replies
Rheum PA added predisone dose of 10mg at 5:30 pm- total is 70 mg per day (3 - 20 MG in morning) . Night dose has definitely controlled jaw pain thankfully and feeling better! Still only getting 3 or 4 hours sleep probably due to predisone. Not sure when starting Actemra infusions.
(1) Any side effects from Actemra? Read they give you Zyrtex before starting Actemra - heard rash common side effect from Actemra.
(2) How long before taking Actemra does it start working? Hopeful predisone dose can be lowered after Actemra kicks in.
(3) Are GCA patients also seeing neuro opthamologist regularly? Thanks so much for your input!
Replies to "@nogiant54 Rheum PA added predisone dose of 10mg at 5:30 pm- total is 70 mg per..."
@nogiant54 GCA for nearly 1 year. Yes, regular appointments with Neuro Ophthalmologist in addition to Rheumatologist.
@nogiant54 I just had my 3rd monthly infusion of Actrema. First time I could tell a difference after infusion. Hadn’t noticed any side effects from Actrema but lately getting bad reflux issues. Could be from prednisone. 🤷♀️.
My ophthalmologist diagnosed GCA and I see him on a regular basis.
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@nogiant54 I'm glad the extra prednisone is helping you.
I took 5 mg of time release melatonin to help me sleep when I was at high doses of prednisone. It allowed me to sleep about 5 hours per night. I started sleeping ok once I got down to 40 mg per day, and I stopped using the melatonin. The melatonin made me feel groggy during the day, but it was worth it to me for the extra sleep.
I have been taking weekly Actemra injections for 2 years, and the only side effect I ever had was some minor fatigue the day after the injection. But that only lasted for the first few weeks.
Google says "Actemra (tocilizumab) typically begins providing noticeable relief and lowering inflammation markers within 2 to 4 weeks. However, full disease control and sustained remission often take between 3 to 6 months, and treatment is typically continued for at least one year." I think I will be taking Actemra for at least 3 years. I have been taking weekly injections for the past 2 years, but my rheumatologist just switched me to every other week.
I came close to losing some vision from GCA, so I saw an ophthalmologist every 3 months until I got completely off of prednisone after 13 months of treatment. The ophthalmologist monitored my eyes to make sure the GCA wasn't causing any damage, and also to make sure prednisone wasn't causing any problems. At one point the prednisone caused the pressure in one eye to get close to the level needing treatment, but the pressure went back down as I tapered the prednisone. Prednisone can accelerate the develop of cataracts, and can cause glaucoma.
Because of the high dose of prednisone, your doctors will also need to monitor your blood sugar, cholesterol, and bone density. My cholesterol got close to treatment level, but it also went back down as I tapered the prednisone.
Another issue for people taking prednisone is weight gain. I was careful with portion sizes, so I only gained a few pounds. But I still developed a moon face. You can get a lot of advice from this support group about diet and exercise when you're taking prednisone.