Prednisone to Kevzara back to Prednisone. ( Hope not )

I damaged my colon years ago trying to control cholesterol with statins. Another lesson about taking medication. Initially they diagnosed me with Crohn's disease. Later changed it to the lipitor. It gave me a life long IBS. So not sure anal leakage was from the prednisone but I have to watch myself with that problem. Prednisone definitely gave me a gastritis. I take 40mg famotidine. If your Dr says your pain is prednisone induced that would be one of the symptoms. Your body is trying to restart cortisol. Not easy. Without enough cortisol as with a prednisone taper it can restart the PMR or simply mimic PMR with the pain. The pain you describe is not unusual for most when trying to taper. Kevzara is prescribed to keep you from a PMR flare while trying to taper. But if you do not have elevated IL-6 it might not help. You have lowered your prednisone but your not off. That is still your issue. Prednisone is silently wrecking your body but if you cant live with pain you may have to go back up. The more you keep bumping up against the cortisol wall it should restart. At your prednisone level you can have your cortisol levels checked. Just realize this can repeat itself over and over. You might have your Dr try something else besides Kevzara. Maybe one the RA drugs for inflammation.

Low WBC is a known side affect of Kevzara. I was on Kevzara from October 23 until last February asI transitioned off prednisone completely. Had to come off in February due to low WBC and being immunocompromised. Using Tylenol and Volteran now to deal with PMR. Loved Kevzara but had to come off. Watch your WBC.

Right now I am almost transitioned off of prendisone 1mg to go : been on kevzara 3 months ; pain has returned but feels different: cannot get up from a sitting position because of weakness while standing : now have a low white count and looks like I will have to stop Kevzara : very nervous about my future dealing with pain

Before you panic too much, just follow your doctor's plan. She's probably trying to figure out if the Kevzara is causing the white cell drop by doing labs before and after the shots. It does look like your prednisone taper was pretty fast if you started at 10. I have been on Kevzara one month and have to wait another two weeks to start tapering and then drop .5 mg every 3 weeks. Even if you go off Kevzara you may be able to stay on prednisone at a lower dose. Not to minimize your concerns but I like what Mark Twain said : " I know that worrying works because everything I worry about doesn't happen".

You got this. I agree with Linda. You have been on prednisone for 2 years so its going to take some time to restart. It can take several months after your off. My sitting is the hardest thing as well. Particularly the height of the toilet. There was another thread on here about life after prednisone not feeling quite the same. We all agreed we felt a little older(which we are)in our daily activities. I did find that OTC medications help some at this point. They dont do much for PMR but helped some during and after the taper. I would take an Aleve in the morning and Tylenol PM at night. Work with your DR. Looks like the Kevzara has worked just the side effects. Another IL-6 inhibitor that works for Dadcue on this site is Actemra. He is on it full time with no side effects. (but everyone is different) Also like Linda mentioned just stay at the 1mg for awhile and let your body settle. Dont rush at this point and cause it to flare back up.

As far as the leg weakness you could get a referral from your doctor for P.T. That could involve just a visit or two for an exercise program to safely do at home. I'm a retired P.T. and have some simple things in mind but of course won't recommend anything over the internet! I have been on prednisone over 2 1/2 years and my strength has not declined so the problem could be a lack of exercise.

I agree with everything that has already been posted. I'm not sure how much my experience with Actemra applies to Kevzara but the side effect profile and almost everything else is nearly identical. Both medications are IL-6 receptor blockers.

When I tapered off Prednisone, Actemra was started when I was on 10 mg of prednisone. I tapered by 1 mg per month for the first 3 months. It took 3 months to go from 10 mg to 7 mg.

I felt well which was unusual because my flares frequently happened at 7 mg. I wasn't very optimistic that Actemra would work because of some comments about prednisone being the "only option for PMR." I wanted to get the "inevitable flare" over with. I tapered by 1 mg per week and found myself on 3 mg of prednisone and still no flare.

Things got interesting after I reached 3 mg. I felt unwell and reported my symptoms to my rheumatologist. My cortisol level was low. My symptoms on 3 mg of Prednisone weren't like a PMR flare. My symptoms were a rundown feeling, fatigue and some pain but not so severe that I needed to increase my prednisone dose. I don't expect to be pain free so the pain was tolerable. My rheumatologist told me to stay on 3 mg until an endocrinologist was consulted because of my low cortisol level.

I needed to stay on 3 mg of Prednisone for 6 months until my endocrinologist said my cortisol level was "adequate." I still had symptoms but my symptoms were improving as compared to getting worse. My endocinrologist said I could try to discontinue prednisone suggesting that I didn't need to taper from 3 mg because that dose was so low. She wouldn't predict what would happen when I discontinued prednisone but I could restart prednisone "if I felt the need."

I tapered off prednisone going from 3 mg to zero in one week. That's when things really got interesting. PMR was controlled well but "other problems" cropped up.

In 5 years on Actemra, I had some transient neutropenia. For reasons I don't completely understand my absolute neutrophil count remained in the normal range so I was told I wasn't at risk of an infection. Actemra wasn't ever stopped for neutropenia. The next time my CBC was checked everything was normal but still low normal.

What is neutropenia?
A lower than normal number of neutrophils (lower than 500) is called neutropenia. Lower than 100 is severe neutropenia. Absolute Neutrophil Count is an estimate of the body's abilty to fight infection.

A quick note about the toilet issue. I am new to PMR (2 months) and am slowly charting my course as I try to figure out how to avoid flares. The worst issue was the low toilet in our guest bathroom. I actually would get to about 8" from the seat and just drop because I couldn't bend sufficiently. Then I found my new "throne" (see pictures). It is 4", cushy, washable. It has straps to hold it to the toilet seat but I find it is stable without. What a help this has been.

Funny. I have been trying to avoid anything that makes me old. I just turned 72. I really need to install handle bars. I just keep thinking I'm not old. But I have been off steroids for a couple years and still left with soreness in my knees and hips. I go to gym every day. I actually have the chair. I dont have the cushion. Thank you.

Ha! I'm 72 as well. I don't have the chair, just the cushion:)
Good for you that you go to the gym!