GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

My jaw, tongue and throat are giving me the most discomfort right now. My medicine scene is controlling my headache as I said I am on 60 mgs daily prednisone and take medicine for bones once a week and then the other pill to control the side effects of prednisone. I know this is going to be a long term type thing because it was so bad to begin with. And every everybody is different. I don’t know what I don’t know when or reasons that they put someone on the two meds you mention, methotrexate or actemya, it will give me something else to learn about. Seems like you go on so long and then you have to research something else again, but have to Keep moving forward. I am sorry you still have your headache. That was the first thing to get better for me, but it took a few days before it started to. It’s a terrible pain to live with.
H hope today is the start of a better day for you.

Prayers.

When I was diagnosed with GCA in 2020 I was put on 80 mg of Prednisone because I was beginning to have eye problems. It helped immediately. About 6 months later I tried both Methotrexate and Actemra. I could not tolerate the side effects.

Hi, I was diagnosed with PMR May 5th 2021. In September diagnosed with GCA. My Rheumy wanted me to start ACTEMRA which I did on October via infusion. I did not have any bad reactions to it and my labs have been coming back normal until my last labs, which we tested m cholesteral and A1C in April. My Cholesteral went way up to 301. Now he wants me to start a statin and keep going with the Actemra. I too was at 60 mg of pred and am currently now on 10mg. I don't know if I really want to continue the ACTEMRA now that this problem has come up and add another medication to my already long list. I had a DEXA scan In may and I do have osteoporosis so I started a fosomax in September. It is crucial that i get off prednisone but I just don't want to keep taking more medications with all the side effects. Not sure what to do??

Prednisone effects bones ,Actemra effects liver.. I also had cholesterol increase. Try changing diet. Reduce egg yokes, cheese, dairy creamers ,alcohol red meat. I reduced mine by 40 in 6 months. My HDL is exceptionally high in the90's which my GP who is a DO feels is positive. If Actemra is working and your labs are good. reduce Pred by 2.5 to 5 mg, then 4.3.2.1. I am also taking extra calcium for bones.

Thanks for the response. My HDL is high as well but unfortunately my LDL went from 128 to 167!! My triglycerides went up too but still in normal range. You are fortunate to have a DO for a doctor. THey look to find the cause of what's going on instead of just telling you to take a pill like so many doctors and mine. I am taking calcuim, vitamin d, vitaman K, magnesium, boron for my bones as well as a biphosphonate (which I don't like), which i will stop if I can ever get off this darn prednisone. I have a video conference meeting with my doctor to discuss this issue and I will bring up diet changes to try first. I'm just nervous that my total cholesterol went from 244 to 301 in just 6 months of ACTEMRA, that's a big increase in a short time. We shall see. Thanks again

I currently have PMR/GCA. I was diagnosed February 3. I had some ups and downs because of an inconclusive bilateral biopsy but I have been on 40 mg of prednisone since end of March.
Getting a blood test on May 1.
Hopefully I can start reducing my prednisone at that point

Remember YOU make the final decision, I have said NO to Doctor's prescriptions many times. My Rheumy loves Methotrexate- no thank you, Try diet for 6 months. Read labels find products with Cholesterol under 5mg.

Thank you . I keep telling my hubby, that NO ONE knows better than yourself on how you feel, no doctor, spouse, child, etc. My rheumy has told me about methotrexate and I told him as well not interested. IF I do decide to stop ACTEMRA I know he'll bring it up again.

I was diagnosed with Polymyalgia two years ago. I was on 20 mg. at the beginning of treatment, but I am currently only taking 2mg of prednisone.
In the past four months, I have
experienced some of what you described. Muscle cramping and spasms in very strange places…like left of my mid-back and lower abdomen. Fortunately, it usually doesn’t last long.
I will ask my excellent Rheumatologist about this strange phenomenon.
Best wishes with your journey.

Glad I’m not alone. I too am at 2 mg. Hopefully moving to 1.5 in next few days. This is such a rough time for each of us, and so little information about all the symptoms. Thank goodness for this site. I’m having some vision issues on occasion too. I went in for sed rate and C reactive levels. All very normal so unlikely to be GCA, but that’s my biggest concern. Having had a bout of that during this nightmare of 3 years. Take care everyone