PMR and Methotrexate

@livingwithpmr
I'll be heading North soon to Nova Scotia, where I have family. Since I have family in the province, I'm somewhat familiar with the medical care process and how difficult it can be.
Wow, that is some tough info to handle. I can only share my GCA story....I'm 82 now, was diagnosed with asthma at age 59 and have had pred on and off for that, plus I use two inhalers with steroids. I was diagnosed with GCA, in August 2019 and have been on substantial doses of Pred until February 2023 because I did lose sight in one eye. I now take 3 mg plus Actemra daily.
I just saw a new primary care doctor here who ordered a bone scan on June 2, last Friday. I have no osteoporosis at all though I do have some osteopenia but 'my numbers are not alarming', whatever that means. Yes, there are side effects to pred, but my bones 'haven't melted'. Not leaving anything to chance, your doctor may be aware of other conditions. I will say, I'm a medical buffet on over 20 pills a day...and OK.💞

My rheumatologist also suggested methotrexate. It is used for chemo. I'd prefer NOT to do ot as the side effects are not good. So I'm going to pass.

I suffer from chronic insomnia and since starting methotrexate (for PMR), about 6 weeks ago, my insomnia has become worse. If I do get enough hours of sleep I only get a few minutes of deep sleep every night. Since the physical body is supposed to heal with deep sleep I’m wondering whether the methotrexate is actually helping?
Does anyone else have sleep issues that could possibly be attributed to methotrexate?

First I'd like to say I do not have PMR but GCA. However, I have two friends in who have PMR and could not take prednisone. One gal, I'm not sure how much she takes each week, tablets, she doesn't feel the greatest the next day. She just anticipates that kind of day and takes it easy. She is in England.

Another gal developed GCA and is in the States. She used to take weekly injections of Actemra and now takes them every two weeks. Hopefully, the option of an alternate medication will become available for PMR patients soon.

Neither of these women has sleep issues. Can you take Tylenol to help you sleep? Would that help do you think? I'm not too much help, but some thoughts. My best💞

I have had pmr since December. I am now up to the highest dosage of methotrexate I can have at 25 mg a week. I am down from 40mg of prednisone to 15mg a day. Going down to 12 this week. The side effects of MTX for me have been two days of nausea, bad headache, and fatigue but every week I take it the side effects lessen. It’s worth it for me to try to get prednisone levels down so I plan around the two days.

Never thought about connecting my trouble sleeping with Methotrexate,I just had a lot of hair loss,my Dr increased my folic acid from 1 mg to 5,that stopped it

I take 2 mg folic acid everyday except on the day I take mtx. If my numbers (ESR & CRP) are sufficiently decreased my doctor may approve trying to decrease my dose of mtx. from 10 mg to 7.5 to see if sleep issues improve.
People are suggesting I try red light therapy. Does anyone know anything about its effectiveness?

Stopping methotrexate,increased my prednisone and am going to do a very slow taper,a mth at 10,a mth at 91/2,a mth at 9,etc

There already is an alternate medication available for PMR patients.

Kevzara (Sarilumab) was recently FDA approved and currently is available in the USA for the treatment of PMR. Kevzara is an IL-6 receptor blocker just like Actemra. Kevzara studies were promising for PMR just like Actemra was for GCA.

Kevzara probably won't be available in the UK anytime soon. Prednisone is still the only option and the best option in the UK. I was told my experience with Actemra to treat PMR wasn't relevant to the good people in the UK who have PMR only.

Good for you!! It is really worth it isn't it...just planning around it. You have a marvelous attitude and I'm sure you will do well~!💞