← Return to New to PMR diagnosis
DiscussionComment receiving replies
Replies to "Hello, I was diagnosed with PMR just about two weeks ago. I have been on a..."
Methotrexate injections weekly work for me, along with folic acid daily. Stay away from Actemra, nasty side effects.
Pick your poison. Prednisone and/or a biologic. I've been on Prednisone since July 2024. Started with 60 mg day due to possible GCA. Prednisone has turned me into a diabetic. I never had previous issues with blood sugar. I have always been active, ate the right foods (mostly), and have normal weight. At one point, my BS was 275. I've lost muscle mass. I will get my bone density checked soon. I will be getting my second Actemra infusion this week. I decided for myself, that reducing eliminating Prednisone was more important than the potential side effects of Actemra. It's an individual decision.
According to Johns Hopkins Rheumatology website, "There is no “safe” dose of prednisone. Prednisone over time increases the risk of cardiovascular disease, osteoporosis and infection. It can worsen underlying diabetes and HTN. The effects are dose related– higher the dose, the worse the side effects. Prednisone use should be minimized. A dose of 5 mg daily use to be considered acceptable, but current thoughts are to try to eliminate completely." https://www.hopkinsarthritis.org/ask-the-expert/prednisone-how-much-is-too-much.
My personal experience supports this statement. After 3 months of prednisone therapy (decreasing from 17 mg to 6 mg), the bone density in my spine has been reduced by 10%, my current glucose level (which was previously normal) puts me in the "pre-diabetic" camp, my bad cholesterol level (which was previously normal) has increased by 50%, I have a "moon face" and fat has accumulated on the back of my neck. I haven't gained weight.
I started on Kevzara in early January and have tapered from 13 mg to 6 mg prednisone. My insurance company approved Kevzara ( that otherwise costs about $4,500 per month) after I had a major PMR relapse during an attempted prednisone taper.
My understanding is that there are studies of other drugs that may make it possible to avoid using steroids to treat PMR. A recently completed phase 2 study in France (found on PUBMED, the NIHs electronic database) involves a new drug that was tested on prednisone naive patients. The results were very promising. I hope that Kevzara's manufacturer does a similar Phase 3
study. Currently, prescribing Kevzara before prednisone fails is an "off label" use - and even decent health insurance companies will avoid paying for expensive biologic drugs by stating that the use is "off label." (Btw. I was shocked to read on United Healthcare's website that its drug plan does not cover drugs that the patient self-injects - which cleverly allows the plan to exclude payment for Kevzara and other biologic drugs).
I wish that I had started on Kevzara at the beginning. I felt better within 2 days of starting Kevzara and wish I had started on it earlier. There is no down-side risk. Both drugs depress the immune system, but only prednisone causes bone loss, high glucose, high cholesterol, thin skin, and a round face.
I can’t comment on whether having a nurse administer an injection would make it easier to get Kevzara approved by your insurance. I didn’t have to fight that battle.
Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper . Hope your eyesight is preserved? My GCA is with no temporal / cranial involvement. Medical emergency non the less with aortic involvement and other major vessels.
I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan .
I’m back to pre diagnosis health, travelling overseas at the moment. Keeping Actemera refrigerated as i travel is a small concern, but doable.
Hi, sorry to hear of ur diag. My docs had me on pred 4 over 7 hrs, must get off. Ra doc said, not pmr is ra. B sure, ck with primary, can't stay with prednisone 4 long. MUST hav diag from experienced ra doc, many tests needed to b sure. Example, test could show beginning of MS. Good luck, stay in touch. Regards, Jerky.
You will find many helpful suggestions scrolling through
the PMR group comments. It sounds like your physician
is aware of your concerns on handling prednisone.
Not all of us experience long term need for prednisone.
You well might be done in a matter of months. The
side effects are manageable and mostly preventable at
your early diagnosis. Know all your lab results and keep
a copy of all your records. If you are concerned about
blood pressure you can easily monitor it with a home
unit.I always took my meds with a meal and use an antacid at night. Mediterranean diet helps with inflammation and weight control. Blood sugar can be checked every few weeks at home. A bone density scan and vitamin D with calcium supplement is indicated as well. If you need a higher dose for symptom control
you can feel more confident and stay active. Walk
every day. If you are proactive and stay positive you
are most likely to do well. Share all your concerns at
regular visits with doctor.