How did you cope with the side effects tapering off prednisone?

Hi @mzamyl, my rheumatologist told me that tapering is a fine balancing act. A doctor friend explained to me that prednisone is needed - with PMR and GCA - to calm the immune system, which is attacking the blood vessels and veins. Also prednisone stops adrenal function which is why the taper has to be gradual - to let the adrenals start functioning again. I've had strange bruising and thinner skin since being on prednisone, but skin also thins as we age. I'm 71. In less than a year, I've tapered down from 40 mg (for Giant Cell Arteritis) down to 3 mg, but on 3 mg the horrible stiff neck was coming back, so I just very reluctantly went back up to 4 mg. Try not to feel hopeless, this is a process and it takes time. Eventually PMR and GCA go away. I'm grateful we have prednisone to at least reduce the inflammation and lessen the pain. Can you imagine suffering with this disease before there was a treatment? People must have just languished and wished for death.

I agree. I just have an appointment with the rheumatologist on April 13 and I am worried he will be disappointed I am not down to 5. I decided I had to go back up to 6.25 today. The shoulder and bicep pain was just too bad. I have 2.5mg pills so I cut them in half. I just wish there was something like steroids but not so harmful. I would stay on them forever. For the first time in 6 years I felt good on 15 mg or even 10.

Aw...I'm back at 15 mg after a week of trying 12.5 mg, but things started to ramp up. Next time 1 mg. Went for my first actual walk today as the weather here has finally started to warm up. It wasn't long or far, but it felt good. Keep trying. Never give up. Cheers!

I think our bodies know best. Don't be disappointed in yourself for trying and if he's disappointed...oh well. I'm at 15 mg. down from 20 mg. I do notice some stiffness, but this will level off I'm sure. I did try going down another 2.5 mg but that was a little too ambitious. Next it will be 1 mg. Probably in a few weeks. Listen to your body. I think 6.25 is amazing!

I can't imagine this without Prednisone or reasonable facsimile, although being off completely would be great. It is a balancing act for sure. I do notice I'm getting some bruising, skin is thin and my moles are getting crusty (worrisome). It is a process and a very individual journey. Having this group helps us to feel "not alone". Prednisone took me from a place of not wanting to go to bed at night because I knew the pain I would face in the morning, to a place of "suddenly I'm able to do this again". Take care ~ Deb

Yes, I'm a little disappointed as well, but back up to 15 mg. Will try again in a few weeks, but with 1 mg. only. I lived with it from Aug. 2021 (unknowingly) until Jan. 2022 and probably began in May 2021 with my first COVID-19 vax. That's when the neck pain reared it's ugly head, but I knew not of PMR at that time. Definitely a learning experience. Ugh. Went for a true walkabout today (not in a store) and it felt good to just do it. I was unable to walk much from end of Feb. to last week of March. My foot slipped off of a chair (being stupid trying to fix my shower curtain) and I scraped the skin on my left shin back about 3 inches almost to the bone. Developed cellulitis in it. Prescribed anti-biotics which worked. Had to knock off of them a day early because of the diarrhea. Had to keep it elevated. Took a long time to heal and the skin is still tender. There's not much skin there to start with. LOL. Thanks for following my story. We all have one, but it's an individual journey. Cheers ~ Deb

Wednesday I went to my regular GP to have a thyroid blood test to see if my dosage of thyroid replacement was still ok. He tested my B12 and D also because I have been deficient at times. I told him about PMR and he said he knew about it, but he seemed concerned that I had been on prednisone since November. He wasn’t impressed by 15mg down to 6.5. He rand a complete blood count-I was not fasting because I don’t have to be for the thyroid or the B12 and D. But the nurse called to day and said my blood sugar tested high so I have to go back for a fasting blood draw. I know prednisone can elevate blood sugar. I have had no problems with it prior to PMR. I guess I don’t mind him testing, but I’m worried about what he will want me to do if it is still high. They didn’t let me talk to him only the nurse. I don’t think I can go down on prednisone too quick because 5 was just debilitating.

The morning pain and stiffness is incredible. I used to spend 30 - 40 minutes stretching before I got out of bed, but, of course, it did no good. I'm so happy that part of it is gone for now. Teri

So true! I’m alternating by 1mg every other day for 1-2 weeks on my ramp down. Seems to be working. Fingers crossed that it continues to work.

My tapering isn't going well. Went from 20 mg down to 15 (1 pill). Decided to increase by a 1/4 of a pill which is 1.25 mg. 15 mg to 16.25. So far not kicking in. The fatigue is getting to me. The pain is up between my shoulder blades and into the back of my neck. Legs are so tired. I seem to be very shaky (almost weak). Also, I seem to have more than normal saliva (weird or what). Hanging in there though. Not hearing back for the neurologist at all. Not able to get into the Rheumatology clinic until June or July (and that's on an urgent basis). I'm okay, just frustrated. If I didn't have this group, I would know nothing. Thank you all.