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!
Hi Boone,
Speaking for myself, I'd do just about anything to avoid going near a health care facility right now. Of course, an an extreme emergency there's no choice, but if I were you I'd start taking PRED again. I got down to 0.5 mg a few months ago, and same thing happened to me. I hit it with 5 MG for a few days, then 4, then 3, then 2.5. It knocked it down to bearable symptoms. I'm at 2.0 right now and holding.
All the best in these most interesting of times.
Bob
i would not avoid pred because of the covid19 situation. This is a very virulent germ which knocks out even healthy people. I am a retired nurse anesthetist and I know I will not catch this if I follow the recommended precautions stringently. They have been published all over the place. It looks like you cane down too fast and the underlying disease lurks. There is no way you can force this. Without pred your body can be damaged by inflammation and you can become irreversibly blinded by GCA. Other wise forum members will share their experience.
Hi Boone, I agree with the other members, I would get back on the Pred. I never reduce my dosage if I have ANY PMR PAIN. Up and Down quickly! Good luck 🙂
Karen, thanks for yours and all replies! I had adhered to the directions of a rheumatologist in my taper. It had worked well until I got down to a couple mg, when the symptoms started "peeking over the edge," so to speak. As suggested, I'm going to have to bite the bullet with respect to Covid19, since these emerging Giant Cell symptoms are here now, and that can be pretty dangerous! So back to the prednisone. I've been staying inside, regardless.
If 2 or 3 mg work for you it should not be compromising your immune system. Even if you need 5 mg for a week or so you should be fine. I believe the problem really is more serious for patients above 10 mg and definitely they should be very very careful at 20 mg and above. This from a post on the HealthUnlocked site a few days ago quoting a rheumatologist.
Boone, learn to listen to our body, you know your condition better than your Rheumey. 🙂
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.
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.
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.
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!
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.
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!
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.
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!
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.
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.
Speaking for myself, I'd do just about anything to avoid going near a health care facility right now.
I hear you! In fact, I just had a "virtual office visit" with my GP. It worked well! It was like a video meeting on skype, but they used "Microsoft Teams." I had to set it up ahead of time and download the software, but like I said, it worked. The doc said it was his first time using it, too. I basically filled him in on what's been happening and got a refill on prednisone (along with my other meds). Of course, I had to make my co-pay, which made it like a real office visit! :^/
I started at 7.5 mgs.2 5 years ago & it took 18 months to taper down to 5mgs.which I have been on for a long time. At 5mgs my immune system is terrible compromised. In Oct. I got the flu & it was the scariest flu of my life since I came close to dying of pneumonia. Shortly after in the 1st week of January(before Covid19 got to the U.S.) I got another flu & once again got pneumonia which I have never had in my life, just bronchitis. This past August I got a horrible illness that lasted 33 day & it was giving my horrific electrical shock pains going about 6" into several nerves in my chest, back,& then up into my head & the shocks were many times every 5 seconds & my fiance could feel the muscles jolting from the shocks. The emergency room doctor had heard of others with identical symptoms but they don't know what it is. Anyway my rheumatologist said you are loosing your immune system from the 5mgs.of Prednisone & he told me to go down slowly on my dose. I was at 4.75mgs & 4.5 but I got symptoms of GCA really bad & after 2 or 3 months of that I had to go back to 5mgs.. My point it that even at a long term,low dose of 5mgs. it still has a profound affect on my immune system.
I'm just wondering, from your symptoms, if you perhaps actually had Covid and recovered- despite pred. Have you actually been tested for that? Also did you ever get the 2 pneumonia vaccines that protect from most bacterial pneumonias (as well as sepsis& meningitis)? In the US they are recommended for over age 60 or younger with pulmonary issues). The names and Pneumovax and Prevnar- given a year apart.