Rock and hard place
Posted , 14 users are following.
Hey all, new member here. I've had PMR for about a year. I've tapered down per month, finally from 3 mg prednisone to 2 mg to 1 mg and finally zero about a month ago. At zero mg my symptoms were "kind of" there, but not bad at all, and my inflammation markers were "normal," but right on the high edge of normal.
Now, after a month without prednisone, the symptoms are slowly increasing - hard to pick up something from the floor, if you know what I mean. Normally, I'd have no problem getting back on a low dose of prednisone, but with this coronavirus pandemic, I certainly am not eager to compromise my immune system at all! I'm between a rock and a hard place!
I'm ambulatory but easily fatigued. I could probably handle this without prednisone, but now I seem to be having some symptoms of GCA. (I didn't have this a year ago when the PMR was really bad.) An occasional "feeling" at the temples, not persistent. Now a weak headache. I do NOT want an arterial biopsy, which sounds excessive to me, particularly if the treatment for GCA is just to get back on prednisone (but at a bit higher dosage).
Well, that's my circumstance. This pandemic really complicates matters for PMR folks. And obviously millions of people are seriously affected by it. Any comments or advice appreciated!
0 likes, 31 replies
EileenH Boone
Edited
The opinion I have found is that above 5mg pred is a possible concern - it probably doesn't make you more likely to catch it - after al, healthy people not on pred get it, but is a risk factor if you become ill. However, having active PMR is also a risk factor Officially, having PMR put you at increased risk, taking above 10mg pred also does so.
It is very likely that if you react now, a few days at 5mg and then dropping to 3mg will keep things at bay and not pose a risk in the context of Covid19 providing you are social distancing consistently - hygiene measures and avoiding contact with people in general. You missed the signs - any returning symptoms is telling you to stop here.
EileenH
Posted
PS - forgot to say, the opinions are from a renowned PMR/GCA research and consulting rheumy in the UK and the official rheumatology guidelines for Covid19.
Boone EileenH
Edited
Thanks Eileen and to all commenters! That is good news about 5 mg being unlikely to compromise the immune system much. That's really a relief. The beginning of symptoms consistent with Giant Cell Enteritis was pretty concerning, so I went ahead and took 3 mg. Pretty amazing stuff! A few hours later both PMR and GCE symptoms eased. I'll go ahead and take 2 mg more and stay with 5 mg for at least a few days.
Yeah Mich, my rheumatologist was skeptical that I even had PMR. I was already on prednisone before I saw her, so I had no symptoms and inflammation markers were zero. I knew this was not just old-age stiffness and soreness. It came on quick and severe a year ago. My GP was on it though.
Then there's Covid19. What a horrible global development! As I said, I'm just staying inside, maybe taking short walks. Best of luck to all!
marike57008 Boone
Edited
I just thought I would share my experience with you. I came off Pred in January 2020 after about a year of being on it. I was able to do so because I had followed a very low carb diet lowering my inflammatory markers. Once I was off Prednisone, I started to have a few niggles of familiar pain and stiffness. My response to that was to even lower my carb intake more. This helped a lot and now in March, I am still careful with carb intake but a little more relaxed. The PMR, I feel, is not gone but can't get a grip on me either. I have full range of motion in my limbs. only my neck gets sore if I am at the computer too long. Eventually, I believe that I will win the battle. Just my experience but it might be helpful to you as well.
patricia43291 Boone
Edited
Hi Boone,
Where are you in this world? I know there are countries that seem to know more about this disease, and have sound advise.Listen to Eileen.
And speaking of Eileen, if you are there, how are you faring? I thing about you every day, and worry; but then tell myself, she is the epitome of "strength in knowledge", and will be alright.
Boone patricia43291
Posted
Yes, Eileen, and well, everyone, has been quite helpful. Great group here. I'm in Salt Lake, originally from SoCal, soon to be moving to north Idaho. PMR is survivable. Hopefully we all get through this Covid19 thing! Best wishes!
EileenH patricia43291
Edited
Still here, locked down, only allowed out to shop for food. But the rate of spread in this region may now be slowing after 2 weeks. The problem in Italy was that they didn't stop people moving about quickly enough and they now know there are large numbers of people with no symptoms. You have to assume that EVERYONE has it and treat the distancing and hygiene with respect.
https://www.youtube.com/watch?v=dkozG3IcXUU
Listen to her - personal experience beats theory and mathematical modelling every time.
Michdonn EileenH
Edited
Thank you, EileenH for the post and video. I know that you and your husband are not taking any chances. Neither am I, but unfortunately many here in the states are not. The governor cannot control the socialization of the people in New York city, which currently our Epic Center, crazy! Stay safe and well my friend!
Twopies EileenH
Edited
and i thank you, too, for your helpful information. here in our senior community in florida many many people (a lot of professionals, many nurses snd health care admins) are not sheltering in. they continue with their patio parties, tennis, pickleball, garage sales, card games, etc. we are horrified. our fear is that the virus will sweep through this community like wildfire. we would shoot for home but that too seems risky, plus the rumor is that rest stops will be sparse. no, my husband cant drive straight through, no, we cant sleep in our vehicle overnight, no, we refuse to risk air travel. we are sheltering in, my healthy husband does necessary shopping, etc. stay well, stay safe.
linda21770 Boone
Posted
pretty much the same story for me. I stayed off the prednisone because of the weight gain. Which wasn't helpful to my knees .
Alieve works well, or Naproxen. They are not good for the body, either as Prednisone but they don't put weight on. I walk 3-4 kms a day. Split in morning and evening. Its helped bring off the weight. I only take Naproxen now when I'm really having a rough day. Otherwise Tylenol is better for the body. It helps with the headaches. So does heat pad and massager.
Also I drink green tea, twice a day. Eat tomatoes, and a list of foods that decrease inflammation.
Voltarin helps with the neck sometimes.
I have had PMR for 6 years. I have come to the conclusion, it's never going away. It's always with me. I just do stretches and move. It seems to attack my Neck and shoulders the most. Everyday. And if it's really a bad day It attacks all my joints I take Naproxen.
It's become my life now.