Does anyone else experience shortness of breath or numbness in hands?

This didn't sound rambling at all. Society seems to have moved into a realm where everything needs to be said in a 20-second sound bite.

I've been on prednisone for a while... it'll be three years next month. I've struggled with relapses from trying to taper too quickly, and sometimes find the struggle exhausting.

While I am now down to low level prednisone use (taking 2.5 mg or 1.25 mg on alternating days), the physical pain associated with PMR seems to be behind me, but those symptoms that you describe - random feelings of intense dizziness; feeling like you're going to jump out of your skin, rapid heartbeat, something akin to a full blown anxiety attack... those are now my almost constant companions. Oh, and the numbness and/or tingling in the hands? Yeah, I get those too, especially in my right (dominant) hand. I sometimes have to hold a glass with both hands, just to be on the safe side. I thank Heaven my wife is so understanding! That said, when I had been tapering from the higher doses, I would also experience these feelings, but they would go away and leave me feeling normal after three or four weeks.

I don't know if these (what to call them? psych flares?) will abate when I finally either get off of prednisone altogether, or at least get it down to a constant dose of 1.25 mg per day. But please know I hear you, I can empathize, and that you are not alone in this struggle.

Most of us are feeling the effects of aging as well as PMR, but the first doses of prednisone when we are initially diagnosed with PMR is enough to get some of us back to near normal. It's the tapering part that can bring us back to the reality of PMR. Our journeys are similar but different, although father time marches on throughout the process. Anxiety will hold you back because it brings on its own set of symptoms that can muddy the waters.

@rugi53 Thought they were over, but today they came back about and hit me hard.. Rapid heart rate which abated with lying down with feet elevated and hydrating, which makes me think I am still having problems with low BP. An hour and a half or so later, I am still having problems with shortness of breath but am working albeit slowly in my studio. I think I need to go up on prednisone. My inflammation levels were quite high and I was put only on 2 mg prednisone now up to six. My rheumatologist answers messages on Thursdays, and the triage nurse is too dumb to recognize PMR withdrawal and has already sent me down the suspected heart attack rabbit hole once. I feel like I am on a roller coaster. I took 7 mg a couple of days ago and got better yesterday.

@potterywoman
Can you get a different rheumatologist? Preferably one who has a care team that answers calls and questions daily?
The prednisone journey will differ for every person and sometimes you have to sort out what’s going on yourself, and tell them what you need to do. I’ve had PMR for 12 years and actually loved my Prednisone journey. I had so much energy, I jokingly told my friends I could probably clean out two garages a day, but if I didn’t exercise daily, I was told I was “testy.” I experienced your symptoms as well. It seemed to help when I increased my water intake and exercise routine. I could only sleep 5 hours a day at most, but boy, did I get stuff done. Haven’t gone through tapering process in years, but I vividly remember my experience. It takes time to get through it and there are lots of scares afterwards regarding what might come next, but I’m 77 now and doing well. Hang on tight, you’re on a personal journey and you need to know that this will pass. Big hugs.

Yes I’ve had the shortness of breath. Anxiety, well that’s understandable, when we are having so many issues and don’t understand the symptoms!
I think it’s part of the symptoms of the medications, try not to worry too much.
Numb fingers, breathless feeling, strange tingling sensation, and pain!

@walterl My first experience with prednisone was wonderful, too. In two days on 15 mg, I went from having to haul myself down the stairs by holding onto the railing with both hands to feeling normal. I honestly don't remember what started me back on prednisone some months back, but I was still on it in January when my daughter and I went to London -- walked 4-5 miles daily, felt great. At some point, the taper got to be too much, apparently, and my rheumatologist's having not warned me of withdrawal symptoms plus my not telling him I was having oral surgery pushed me over the edge. I didn't recognize symptoms as rheumatological until I also started having problems with finger joints swelling and becoming painful. I'm getting ready to send a message to my rheumatologist to tell him the improvements were short lived. Everybody but everybody thinks I should have a cardiac workup, but after gasping during lunch just now, I walked home -- not far, maybe 1/10 mile, but felt better. Walking to the gym and doing my PT for my shoulder also energizes me. I think it gets my blood flowing better and helps regulate my BP. Your post helps because I know that I need the PMR/SAI addressed and don't want to be stuck going through a bunch of tests for what I don't have while neglecting what my body and my inflammation levels say I do have.

@potterywoman
Prednisone can affect your heart rate and BP, so it may be wise to see a cardiologist even if you feel better after walking. Cardiac issues are not always symptomatic.

If one more person says to do that, I am going to absolutely scream. In epidemiology, we learn to look for exposures that could have caused disease, and the timing is PERFECT for SAI, my inflammatory markers are consistent with SAI, my ACTH and I could have died when my blood pressure plummeted while I was still taking a medication for hypertension. In addition, when I feel symptomatic, drinking water generally helps and I rise like Lazarus from the dead. On the other hand, anxiety throws me into an attack of breathing difficulty, and I am extremely anxious and in therapy for it. Sitting here calm;y until I read this, I am now feeling the old familiar anxiety moving in. I understand where you are coming from, but PLEASE. The LAST THING I need is for people to constantly feed my anxiety.

@potterywoman I have been tapering from a flare and when I got to 6 mgs the fatigue was overwhelming and my blood pressure was low, I suspected adrenal insufficiency and going up 1/2 mg actually resolved it. Currently at 6 1/4 for the past 5 weeks and doing okay. Not great but blood pressure is normal. I'm sorry about your anxiety.

Thank you! My BP is like a roller coaster due to my anxiety. I am heading to the anxiety clinic today to start treatment, and I took a 7 mg rescue prednisone. I think that 7 every other day seems to be good, so I may try c 1/2 daily. I am not hearing from my rheumatologist who is probably tired of me contacting him about continuing problems (but frankly, if he had recognized the symptoms when I complained earlier, I wouldn't be in this mess in the first place), so I am on my own. I am looking for a new rheumatologist.