I keep relapsing when I try to get off prednisone

Thanks for your input. At this point I'm going to hope a looong slooow taper will work.

Pmr is such a dilemma. In my 6th year.
Original dose was 20mg. Easily got below 10. My tapering issues seem to be inflammation problems that may not be pmr. Early in May I was told to do 7.5mg prednisone for a month, reduce to 5 mg and stay at 5mg until Aug appt. I got to 5mg with no problem. My crp had been elevated. Since March I've been dealing with insertional Achilles tendonitis. HLA-B27 test was neg. I have been using a heel pad and gone to P T and still icing. My heel is still hurting. I have Haglunds deformity from the tendon rubbing, excess bone forms, also a spur. Recently read that pseudogout/cppd can affect the Achilles tendon. My hand xrays suggest cppd arthropathy. Maybe that's the problem.
I have passed on methotrexate. Hydroxychloroquine and Kevzara were suggested. I think I am to pick one by August. Hydroxychloroquine can cause retina problems and I already have macular dystrophy/vitelliform lesions so I think that's a 'no'. Insurance will be an obstacle for Kevzara.
Right now I have no hip or shoulder problems. Tapering seems to affect hands or now my heel.
My June Crp was normal. Jan,feb,march, april, May mildly elevated according to rheum.
I was having muscle aching in the back of my thighs. I stopped taking the Zetia med I was taking instead of statins but it can cause the same muscle issues. Not sure now if increasing pred or stopping zetia was responsible for the leg pain disappearing.
Seems like taking any med leaves you vulnerable to an undesirable side effect - at least in my case. Hurdle after hurdle.
Seeing my pcp tomorrow. Pcp and rheum had a difference of opinion of whether or not I should get a Reclast infusion after my last bone density test. Will discuss it again.

Well, my crp today was elevated, what my rheumatologist would refer to as mildly elevated. So I will stay at 5 mg til my August appt. The only real discomfort/pain is my Achilles tendon/heel. Doesn't seem like it's pmr. Doesn't seem like prednisone is what I need, imo. Frustrated, exasperated and tired of thinking what to do.

bones. I have osteoporosis. And had it before prednisone. Now have been on prednisone for 7 years. my spine got to -3.5 and for the last 2 years I have been doing heel drops (google ..you just go up on toes and clunk heels to floor not so so hard just a little shock effect) and my last DEXA shows -2.7 which is almost back to osteopenia!! NO meds for osteoporosis. So it can be improved naturally. I have the same flaring problem. get below 2mg. and PMR pain comes back. seeing a rheumatologist in 2 weeks. Not sure what to do. but hoping all will be better. My hips stayed the same on the new dexa. -2.1 around there. Anyway just thought you might be interested.
I am hoping to stay will low prednisone rather than try the new drugs. devil you know and all. but will stay open to what doc says.

I had heel spurs decades ago which were painful and tender, worst in the mornings. It seemed like it would never go away, but I bought thick lambswool moccasins to pad the feet soles and stopped walking on hard surfaces. Eventually it went away. I don't know if thick cushioned soft soled shoes might help you too?

I do think our systemic PMR inflammation can drift into other parts of the body over time and cause seemingly unrelated problems. A few months ago while having my first PMR flare, the balls of my feet became very tender and painful when I walked which caused a limp. (Metatarsalgia or Morton's Neuroma, doctor will confirm at next appointment) My feet had been fine till then. I now wear only thick cushion-soled slides with arch support. They are the only thing that brings relief. Hopefully it will resolve over time.

I have a pair of each of these and switch from one to the other during the day. Archie's (AUD$60) are best for me. Oofos Ooahh (AUD$95) have a thicker curved sole which isn't so good for balance. Both of them mention Achilles tendonitis too.

Yes ... it isn't that prednisone causes these things to happen. It is more that prednisone exacerbates things and makes preexisting conditions worse.

To be fair ... my BP was probably "borderline" before PMR and prednisone. I took prednisone and felt well enough to do a long distance bicycle ride. That was when I nearly collasped from exhaustion. I reported an irregular pulse to my primary care doctor and he ordered the EKG.

I honestly thought I was doing well on prednisonefrom from a PMR perspective before all this happened . Then I decided that I wasn't doing well in terms of my overall health. Prednisone had a way of making me feel better than I actually was.

Thanks for your suggestions. I've been wearing slide in shoes or birkenstocks. The heel pad is wool and helps. Funny that one of my cats is intrigued by the heel pad. I'm thinking I should be able to taper the pred but wondering how significant the elevated crp is. Do your inflammation markers need to be normal to taper ? I'm going to continue the stretching exercises and icing and hope that works. Also focusing on diet.

Google "Dead slow taper."
It is a tried and true method for getting off prednisone for many. It takes quite a while but seems helpful so far for me. I saw it on the PMR support group on FB. Good luck to you!