PMR pain management with medical cannabis

I started with Actemra (tociliumab) injections every 2 weeks. After a year, the injections were changed to weekly. Now I do monthly infusions of Actemra which I like better than doing the injections. Actemra inhibits the IL-6 inflammation pathway in the same way as Kevzara.

I took Prednisone daily for more than 12 years to treat PMR. I wasn't ever able to taper my Prednisone dose much lower than 10 mg during the entire time.

It only took me a year to get off prednisone after Actemra was tried. When I doing Actemra injections every 2 weeks, I was able to taper from 10 mg to 3 mg in four months. When my cortisol level was checked, it was too low for me to continue my Prednisone taper. I had to stay on 3 mg of Prednisone for about 6 months until my cortisol level improved.

After my cortisol level improved, an endocrinologist told me 3 mg was a low dose. I was told at that low of a dose, no taper was necessary. My endocrinologist said I could simply stop taking Prednisone.

As long as my cortisol was "adequate" it would be safe to go from 3 mg to zero. My endocrinologist also checked with my rheumatologist who said I didn't need to be on Prednisone anymore because Actemra was keeping PMR under control.

I was skeptical that I could just stop prednisone after so many years. I was reluctant but when I had enough courage to stop Prednisone I did a "countdown taper" --- 3 mg to 2 mg to 1 mg to zero in one week.

I had a flare but it wasn't a PMR flare. I have multiple autoimmune disorders so treating all of them with one medication is difficult Eventually I was switched to a monthly infusion of Actemra and all of my autoimmune disorders have been controlled. I haven't needed any Prednisone for 4 years. No flares of PMR or anything else as long as I continue my monthly infusions of Actemra.

It's amazing that you tapered that fast. I don't see an endocrinologist, so I don't know what my cortisol level is. So, I guess, based on your response, my 2.5mg every other day should work for me. Or I could just taper to 2 mg, then 1mg. Just stopping the prednisone scares me. She also wants me to taper my Kevzara too. I'm so happy you have your disorders under control! That's very good news for you!

If you are at 2.5 mg, I think it is important to have your cortisol level checked. I don't know why rheumatologists think checking a cortisol level isn't necessary. Their focus is mostly on rheumatology. Unfortunately, prednisone suppresses adrenal function which is why we need to taper prednisone slowly in the first place.

She has never suggested a cortisol test. Do you think her tapering plan will work or should I do a slower taper? Thank you!

Alternate day dosing is often tried so 2.5 mg every other day might be worth a try. I don't know if it will work or not but I know some rheumatologists suggest it. Nobody knows this stuff in advance before trying it to see what works and doesn't work.

If you are on Kevzara, I think there is a good chance alternate day dosing will work. Hopefully you won't have a PMR flare since you are on Kevzara.

My rheumatologist wasn't overly concerned about my cortisol level when I asked. She insisted a slower taper would work and my cortisol level wasn't that important.

When my cortisol level was checked and found to be low, an endocrinologist said it was too low to taper prednisone any lower than 3 mg. She said I shouldn't even attempt to taper any lower than 3 mg until my cortisol level improved.

A morning 8 a.m cortisol level is a routine lab and provides very useful information in my opinion. This is expecially true for people who have taken prednisone for a long time to treat PMR.

How long have you taken prednisone? What was your highest dose and how long were you at that dose?

My case wasn't the norm for PMR. I started with 40 mg and I was still on 30 mg after 5 years. I was forced to taper extremely slowly because there were more things going on besides PMR. However, PMR presents when we are older so many of us have other medical conditions in addition to PMR to contend with.

People with isolated cases of PMR with no other medical conditions are rare! Even when people start with PMR and have no other medical conditions --- prednisone side effects will likely create some additional medical conditions.

I started with Actemra (tociliumab) injections every 2 weeks. After a year, the injections were changed to weekly. Now I do monthly infusions of Actemra which I like better than doing the injections. Actemra inhibits the IL-6 inflammation pathway in the same way as Kevzara.

I took Prednisone daily for more than 12 years to treat PMR. I wasn't ever able to taper my Prednisone dose much lower than 10 mg during the entire time.

It only took me a year to get off prednisone after Actemra was tried. When I doing Actemra injections every 2 weeks, I was able to taper from 10 mg to 3 mg in four months. When my cortisol level was checked, it was too low for me to continue my Prednisone taper. I had to stay on 3 mg of Prednisone for about 6 months until my cortisol level improved.

After my cortisol level improved, an endocrinologist told me 3 mg was a low dose. I was told at that low of a dose, no taper was necessary. My endocrinologist said I could simply stop taking Prednisone.

As long as my cortisol was "adequate" it would be safe to go from 3 mg to zero. My endocrinologist also checked with my rheumatologist who said I didn't need to be on Prednisone anymore because Actemra was keeping PMR under control.

I was skeptical that I could just stop prednisone after so many years. I was reluctant but when I had enough courage to stop Prednisone I did a "countdown taper" --- 3 mg to 2 mg to 1 mg to zero in one week.

I had a flare but it wasn't a PMR flare. I have multiple autoimmune disorders so treating all of them with one medication is difficult Eventually I was switched to a monthly infusion of Actemra and all of my autoimmune disorders have been controlled. I haven't needed any Prednisone for 4 years. No flares of PMR or anything else as long as I continue my monthly infusions of Actemra.