I keep relapsing when I try to get off prednisone

The Dr Sarah Mackie webinar was interesting. I liked her comment about "doctors don't treat themselves" implying that patients shouldn't either. She easily admitted when she didn't know some things which is a good trait for a doctor to have.

I didn't self medicate with prednisone that much after PMR was diagnosed. I certainly self medicated before PMR for other autoimmune conditions. I had so many things that happened to me before PMR it was no wonder I developed PMR. I am so grateful for the advice I received from my rheumatologist after PMR was diagnosed,

Access to medical care is a problem. With the internet there are too many people who declare themselves experts and they fill the void with their medical advice. The Mayo connect forum is extremely good. People giving medical advice doesn't seem to happen too much. Sharing one's personal experience is one thing. Giving medical advice is something else. I think people will have better luck listening to their doctors.

If there is one takeaway from my 12 years with PMR --- I learned how much I didn't know.

Relapsing no matter how a person tapers prednisone is a real problem. There is no single way to taper prednisone that works for everyone. There are too many variables from one person to the next person. You just need to keep trying until something clicks.

I've been on Prednisone for about 18 months and managed to taper down to 6.5 but then had a huge flare. The highest I had been on was 15 mg daily but I had to go up to 20 to get the flare under control. I'm back down to 12.5 now and crossing fingers. My rheumie told me that if I could get down to 4 mg I could stay there from then on and it wouldn't hurt me plus my horrible side effects would go away.

The 7 mg barrier is hard to get past. I had problems at that dose of prednisone too.

My rheumatologist said 3 mg would be acceptable and that dose would be "relatively safe" and wouldn't cause too many problems. I needed to stay on 3 mg for six months until my cortisol level improved before I allowed to taper off prednisone.

My PMR symptoms have been well controlled but the side effects of long term prednisone use took years to improve. Don't expect the side effects of long term prednisone use to go away too soon.

After I got off prednisone there were side effects of long term prednisone use that I didn't know I had. Those side effects were discovered by my endocrinologist. Metabolic side effects sometimes never get better according to my endocrinologist. I'm working on the metabolic problems with lifestyle changes. Diet and exercise are very important. At least I have the energy now to exercise more.

It takes a long time to make a complete recovery. Things do improve over time. I have been completely off Prednisone for 3 years. I still have room for improvement. I still see a rheumatologist. I'm still being treated for PMR and other rheumatology problems.

Same here. Very gradual elongated taper by .5mg. Began at 10 in April, only down to 8.5 now. I feel like a prisoner of prednisone, but what's the alternative?

Thank you for your valuable info. I'm on Mounjaro these days and it has helped a lot with my diabetes which of course the Pred made much worse. Also helping with my ravenous appetite I developed after starting Pred. When I got down below 10 mg my bloody red demon eyes went back to normal and also my puffy face. Even the awful almost solid purple bruises on my hands and forearms started fading. I don't mind getting old but I hate looking like a goblin. lol

I was never "officially" diagnosed with diabetes when I was on prednisone. I was "borderline" as they say but not diabetic. My endocrinologist said I had insulin resistance which is the precursor to diabetes. My insulin level was too high as compared to my glucose level being too high.

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I'm sure I was rough looking too.

I think my mood wasn't always the best based on how many times people asked me how much Prednisone I was taking.

I was already diabetic, T2, when I developed PMR and started Prednisone. My blood sugar and my BP were well controlled until then but within two weeks of taking Pred both were sky high.

Don't get me started with my blood pressure. My blood pressure was spiking and nobody knew because it wasn't ever too high when my blood pressure was taken. When I started having heart rhythm irregularities, an EKG was done. The EKG revealed that I had left ventricular hypertrophy (LVH) which is usually caused by high blood pressure.

My primary care doctor told me to check my blood pressure more often. It took a couple days for me to catch a blood pressure reading of 210/110. I thought my blood pressure machine malfunctioned except the people in the emergency room verified that my blood pressure was extremely high. I was monitored for 2 hours in the emergency room while my blood pressure returned to normal. This all happened in the morning after I took my prednisone dose.

I was referred to a cardiologist who started me on 3 blood pressure medications. I took those BP medications for 10 years while I was on Prednisone.

Now I'm off Prednisone. Within 2 years all my blood pressure medications were stopped one by one because my blood pressure was getting too low. Now I'm off all my blood pressure medications.

Oh wow! Good thing you persevered and were proactive. I was on the lowest dose of a mild BP drug once a day but soon after starting prednisone ended up on 3 meds twice a day.

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.