PMR caused by a virus?
Posted , 10 users are following.
Hi everyone,
I am new to this - diagnosed since Dec 14th only. I was at home recovering from a hip labral tear surgery and doing pretty good. I went on a cruise that visited Mexico and Honduras and when I got back I had a low grade fever for 4 days and my teeth were all hurting. I chalked it up to a virus. Then one morning the following week I woke up with stiff shoulders/hips/neck, a great amount of fatigue, terrible malaise, and not too interested in eating. I lost 12 lbs. When I saw the Rheumatologist the first time he chalked it up to you have a virus, here is some Cellebrex for the inflammation and I will see you in 3 months. A week later I was getting worse so I returned and begged him to listen to me. I told him that this is not me, I am physically fit and very active and now I feel like I am 85 but I am only 52. He put me on prednisone and after 2 doses was feeling more like me - I felt great! Now a couple of weeks later I still feel like there is that 20% of me and my energy missing....Did anyone else experience that great feeling to a little less great? Did your doctors think that it stemmed from a virus?
Thanks!
2 likes, 49 replies
Danrower Cyn1965
Posted
I believe I have a subset of PMR, called RS3PE (Remitting seronegative symmetrical synovitis with pitting edema) , because I had involvement of hands and feet. a google search will explain.
Additionally, prior to diagnosis and low dose prednisone, after 4 weeks of misery, I had the experience of inflammation suppression for 8 hours, when I drank 8 ounces of tequila over a 4 hour period on cinco de mayo, 2014. (I am a light and seldom drinker) symptoms returned slowly over the next day. Perhaps the alcohol caused dehydration and/or immune response suppression.
Good luck, Cyn You will find good information here.
jennifer99312 Danrower
Posted
Hi Cyn, I too am 52 and have been recently diagnosed with PMR. I started on the prednisone yesterday and felt some relief but this morning I'm worse than ever. For the last three months, I've been going from one specialist to another because initially in my case this all started with a suspected appendicitis and severe abdominal pain. Which since then disappeared leaving only this hell.
I'm a teacher, I was really active up to three months ago. I play the flute, I swim, walk but now I find it hard just to get off the toilet. I'm sure you know what I'm talking about. When I see old people walking around now I completely understand how they feel and do you move from one side to another doing an impression of the planet of the apes?? I'm taking 15mgs of prednisone a day for two weeks. Lets see what happens. If you feel 80 percent better that's bloody amazing. Tell me where I have to sign up!!
jennifer99312 Danrower
Posted
Hi Dan what's that inflammation suppression? I started on predisone yesterday and last night was the worst night of my life and today I'm still crawling about in agony. Worse than ever. Is this normal when you start the treatment?? Or should I have started to notice something improving? I don't have all the exhaustion thing just pain. Actually the idea of the tequilla or gin was what I was thinking of but you put me off. Do you think marijuana would help?? I don't even smoke so I'm not sure if it would do anything for me.
Cyn1965 Danrower
Posted
Cyn1965 jennifer99312
Posted
I am taking only 10 mg. Some say it is too low but some sites do suggest as low as 10. I guess its us conservative Canadians! 🙃
It is great I am back hitting the gym but do still feel some aching... nothing compares to before Pred though. A little higher might cut the last 20%? I usually take a dose at am and one in the evening at 5 pm. I slept in last weekend and got up at 9:00 aching like square one. ... don’t miss a dose I guess!!
Danrower jennifer99312
Posted
Hi Jennifer
as you read, I report my data points, and try not to over reach or make generalizations. I am sero-negative, with slightly elevated ESR and CRP readings when inflamed. (I have been in remission for 2 years) The inflammation suppression from tequila was dramatic and real. I described it to the head of Rheumatology at Mayo clinic in Jacksonville, and several physicians and described the experience to others and have been met with vacant stares and dismissal. BUT, alcohol is unstainable for me. Also, there is dramatically less RA patient incidence in the alcoholic and high consumption of alcohol population.
I have no perspective with marijuana effectiveness. I'm sure others here have more experience, but I don't know if they would comment. We live in quite a world.
best of luck
Dan
EileenH jennifer99312
Posted
Are you also resting? You can't take the pred and then expect to carry on as normal - you have to do your bit too. But you should get some relief within a week if it is PMR.
Some patients need more than 15mg - I have no idea what sites Cyn has seen 10mg on but it is not in the 2015 EULAR/ACR Recommendations for the management of PMR where they say "the lowest effective dose in the range 12.5-25mg/day, absolute maximum of 30mg and not less than 12.5mg"
Anhaga Cyn1965
Posted
Cyn, I'm in Canada and was started at 15, and didn't start to taper for 5 weeks and then by only 1 mg.
Mrs_CJ Cyn1965
Posted
i am in Canada (BC) and I was started on 20 mgs.
Unfortunately my GP didn’t know anything about PMR and had me reduce way too fast. He is more knowledgeable now and is a good sounding board.
jennifer99312 Cyn1965
Posted
Hi Cyn, I too am 52 and have been recently diagnosed with PMR. I started on the prednisone yesterday and felt some relief but this morning I'm worse than ever. For the last three months, I've been going from one specialist to another because initially in my case this all started with a suspected appendicitis and severe abdominal pain. Which since then disappeared leaving only this hell.
I'm a teacher, I was really active up to three months ago. I play the flute, I swim, walk but now I find it hard just to get off the toilet. I'm sure you know what I'm talking about. When I see old people walking around now I completely understand how they feel and do you move from one side to another doing an impression of the planet of the apes?? I'm taking 15mgs of prednisone a day for two weeks. Lets see what happens. If you feel 80 percent better that's bloody amazing. Tell me where I have to sign up!!
EileenH jennifer99312
Posted
You may need a bit more - 15mg is the bottom end of the range for starting dose. The 2015 Recommendations for the management of PMR (link here https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 ) say the lowest effective dose in the range 12.5-25mg, exceptionally 30mg. Speak to your doctor if the 15mg doesn't give a reasonable improvement in a week.
Have they considered you may have large vessel vasculitis - which can affect abdominal arteries including the mesenteric artery and that could cause abdominal pain. I had it occasional in the 5 years I had PMR without pred - it was intermettent but went away altogether once I was on pred.
jennifer99312 EileenH
Posted
Hi Eileen, however did you manage for five years without medication? You must be an amazing person. I always thought I had a high pain threshold until now. But after three months of this I'm really beginning to crack.
EileenH jennifer99312
Posted
There wasn't a lot of choice! And you have to do what you have to do...
For a long time every morning Mon-Fri I fell out of bed (literally) and struggled into my swimsuit and joggers and crawled to the car to get to a new gym (the old one didn't have a pool and it wasn't much use) to do an aquafit class in warm water. Always at my level, not anyone else's. After that I could move much better! It even let me manage an adapted Pilates or Iyengha yoga class. They helped a lot too. I didn't have to put a bra on until I finished the class - I showered at the pool. But I was never out of pain entirely. When I finally got pred it was magic - practically pain-free in under 6 hours.
Don't know if the delay in being given pred has made any difference - but the PMR never went away in that 5+ years and to my knowledge hasn't gone away in the last 8+ years since I have been on pred. But it has been a lot more bearable.
Porgi EileenH
Posted
How on earth did you cope. I think I'm bad but I'm not as bad although I can't get to a gym - but the nearest is a round trip of 30 miles plus for me because I don't have the money to join a private one. Not sure if I told people here but the physio due to phone me to discuss what help she could give was taken ill and another phoned ( NHS physio's) to tell me. I asked if I could have a telephone appointment with someone else and she said No I've got my own clients to deal with and in any case PMR is a chronic condition so we won't be able to help you' and then slammed the phone down on me. So I'm still waiting to hear from the one who was taken Ill. The GP says he's sure they will get in touch, and I probably got a crabby one who deals with nothing but sport's injuries, but if I don't hear soon I'll ring them and see what's going on.
EileenH Porgi
Posted
Physio won't help the PMR itself although if you get a good physio they can often help the"add-ons" as i call them. I love my physio - but the system here is very different from the NHS and they are very "in" to using physical therapies. Which suits me very well indeed!