Hi All : I'm new to all this, I was diagnosed with... - PMRGCAuk

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Lorraine21 profile image
18 Replies

I'm new to all this, I was diagnosed with PMR in April 2015, It was caused by an allergic reaction to a vaccination I had done in January!

Since April I have felt a bit better, but what I miss the most is a good nights sleep.

Have tried valerian before I go to bed makes me sleepy but still keep getting up to go to the toilet.

Has anyone any other ideas?

Also the fever doesn't last long but is very frequent?

And lastly the fatigue!

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Lorraine21 profile image
Lorraine21
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18 Replies
Annodomini profile image
Annodomini

Hello Lorraine 21. I haven't heard of fever as a typical symptom of PMR. I haven't suffered from that in the four years I've had the condition, except when I had a virus. However, the fatigue is still there and is unpredictable. Sometimes I just feel too tired to crawl upstairs to bed. And have been known to sit down and fall asleep after breakfast.

suzy1959 profile image
suzy1959

No fever for me either, but the only thing that helps me to sleep is Amitriptyline. It also helps with the PMR pains to some extent too.

jane57 profile image
jane57

Hi Lorraine21, I was diagnosed with PMR in March 2015, and I have definitely suffered with a low grade fever. It's very much like flu symptoms, however this went away when I was started on 15mg of Prednisolone. Also fatigue which hits around mid afternoon or if I over-do things! I work in a Primary School and I have to rest when I can. Sleep pattern for me is very much up and down, and as regards pain I get some good days and other days not so good? PMRpro has given some fantastic advice on this site and encourages us all to REST. Would be interested to know what strength of Pred you are on, also what Vaccine triggered your condition. If you don't mind me asking? Good luck with your management of this disease and I wish you all the best. Jane.

Celtic profile image
CelticPMRGCAuk volunteer

Lorraine, was it the flu vaccine? We have come across people in the past who have mentioned their belief that they succumbed to PMR following the flu vaccination, although there isn't any hard-backed evidence for this and there is still no known cause.

I also experienced fever, especially overnight but that tended to peter out once on treatment. If your starting dose was sufficient to get control of the inflammation and you haven't reduced too quickly, then that fever should have resolved. On the other hand, are you sure you aren't experiencing hot flushes/sweats which can be quite common whilst on steroids.

Fatigue is unfortunately a consequence of both the inflammation and the steroids - don't try and fight it but ensure you have plenty of rest, and don't overdo things on a 'good' day as PMR has a nasty habit of coming back to protest.

Jennifergregory2 profile image
Jennifergregory2 in reply to Celtic

I came down with PMR in June 2014, shortly after a flu vaccination. My doctor does not believe there is a connection. However I am wary of having the flu vax this year. Pain was quickly relieved with 25 mg/ day Pred. Now down to 7 and taking it VERY slowly after a few flares. I did have sweats in the early stages but these have subsided.

Things will improve. Rest and look after yourself,

Jenny from OZ

PMRpro profile image
PMRproAmbassador in reply to Jennifergregory2

The most likely link between the flu jab and PMR is that the jab was the final straw that sent the immune system into freefall - but there are plenty of people who developed PMR who had never had a flu jab. I'm one and most people under 60 in the UK with PMR are unlikely to have had a flu jab. I also have the flu jab every year now and it makes no difference to me at all. What might make a difference is NOT having the flu jab and then getting the flu - when the pred is damping down your immune system and you might have difficulty fighting it off.

Jennifergregory2 profile image
Jennifergregory2 in reply to PMRpro

Thank you for this explanation re flu jab.... Very helpful

Cheers

Asbeck profile image
Asbeck in reply to Jennifergregory2

jennifergregory2; lorraine21: I started with GCA symptoms shortly after taking a flu vaccine in late March of 2013, the last vaccine dose being 55 years earlier. In January 2014 I asked my Rheumy whether I should take it again, as well as the pneumonia vaccine. I said something like: "Maybe the correlation was not a causation." She said: "No don't think that. It's very possible that it was a cause and effect." (She asked why I had not had many flu vaccines. Frankly, I don't know.) The doc works in a hospital clinic. The hospital wants every employee to have the vaccine. If they don't take the vaccine they must wear a mask during flu season. Hundreds wear the mask. My doctor only said: "I would certainly get the pneumonia vaccine." But I took it as: "Don't take the flu vaccine." Someone else on this site communicated with me about the same scenario, but got the vaccine, and had a flare. Re: Fevers: Also I had terrible fevers before my GCA was diagnosed. Each day they started, low grade, in the 99 degree F range. Often they rose to 102 degrees F by the afternoon. Every day I would start again with the fevers. I've tried to research as much as I can. Fever is mentioned as a symptom of PMR as well. (I also have it sometimes but with no fever.) When treatment began, the fevers stopped. Now that I am being treated when my C reactive protein reading is a little high, I notice that I have some low fevers again and don't feel great. I definitely believe that the disease gives you fevers. Fevers are common with cancers of the blood. Why not with this "blood" disease? Finally I read an article (new) which stated that doctors found the chicken pox virus in the tissue near arteries affected by GCA on many patients. I'll see if I can find the site. There was some mention of a viral connection and of possibly taking an antiviral drug like acyclovir (probably spelled wrong) if you have GCA. I am afraid of the shingles vaccine. But I'm afraid of shingles. I've had a very mild case of chicken pox. I did not take the pneumonia or shingles vaccine. Hope that this helps. Good luck.

PMRpro profile image
PMRproAmbassador in reply to Asbeck

"Why not with this "blood" disease?" - maybe I'm misunderstanding you but PMR is not a "blood" disease. It is a vasculitis - inflammation of the walls of the blood vessels. But it is a disease of the immune system, not the blood.

piglette profile image
piglette

Fatigue and flu like symptoms plus horrible pain are symptoms of PMR. Steroids sort out the pain side to a greater or lesser extent, but not the flu like problem and the fatigue, although I do find this varies as to how stressed I am and how much I push myself. It does seem better if I take it easy. When first diagnosed with PMR I started taking an interest in nutrition as I wanted to avoid a moon face. I discovered that Montmorency cherries are an anti inflammatory and also help with sleep. I buy the juice and take a couple of dessert spoonfuls a day. I find it delicious.

Chihuahua1 profile image
Chihuahua1

Other than Valerian you haven't said whether you are taking other meds. Prednisone can cause the frequent bouts of "fever" although I would liken mine to going through the menopause all over again complete with the hot flushes. Unfortunately fatigue also comes with the territory, especially on prednisone. I'm on 40mg at the mo to bring back under control a sudden flareup that started 5 weeks ago. If I sit down for more than a couple of minutes I find myself dozing off. I hate taking the steroids as they make me woolly headed and constantly bloated, especially as they cause me to store copious amounts of water. I gain weight even though I'm careful with my diet, which I don't ever lose again no matter how hard I try.

jinasc profile image
jinasc

How I wish that a flu vaccine was the cause, that would be a tremendous step forward.

Unfortunately at present there is no known cause.

You might want to take a look and fill this in: for both pmr and gca.

quantisurve.com/cgi-bin/pmr...

This on for GCA only.

Everyone who fills these in are helping themselves and for the future.

marijke-foundation.eu/Website-Odd-Complaints/index.htm

Megams profile image
Megams

Hi Lorraine

I too would be most interested to know what vaccine you reacted to as I had a tetanus booster containing combined diphtheria and whooping cough March 2014 with a reaction some 2 to 3 days later which never left me.

Also had Novo virus the month previously (Feb 2014) which would not have helped either.

PMR eventually diagnosed early this year but struggled through 11 months of last year with pain, fatigue and mobility issues - very suspicious of the vaccine I was given.

Do keep in mind that a lot of these vaccines contain a preservative thimiserol (spelling may be wrong) which is mercury and is definitely not good for any immune system let alone a weakened one like ours.

Kind regards and good wishes as you come to terms with your PMR journey.

Runrig01 profile image
Runrig01

I also had PMR start 4 days after flu vaccine. My first Rheumatologist agrees it is the cause, but said it is the additives in vaccines that are used to switch your immune system on to deliver the goods that is to blame. Aluminium or Mercury are two that are often used, in a small number of people these can trigger autoimmune diseases, when the additives send your immune system Into over drive.

Despite experts agreeing it is the trigger, I still have my vaccines because the horse has already bolted. If you get a dose of flu your PMR will flare, if you have the vaccine, it may aggravate things. Personally the flu vaccine causes my muscles to be more painful for a few days then it settles down. I work in the frontline NHS as well as being asthmatic so have little choice but to have it, to protect myself and my patients.

PamOakes profile image
PamOakes

Hi Lorraine

I was diagnosed in Feb of this year & started on 20 mg of pred now down to 11 mg & managing ok. The fatigue is constant as are the sleepless nights & the constant sweats.......massive hot spells that make me feel claustrophobic & are embarrassing at work with sweat running down my face & neck! I hoped it would lessen as I reduced pred but not as yet. It also seems normal to get flu like symptoms sometimes....... I'm not sure if all these things are pmr or pred but either way it's not as bad as the pain & stiffness of the disease itself I find.

Good luck in your journey through this (I haven't had a flu jab by the way so can't help you there)

Pam

SweetSue profile image
SweetSue

Before my PMR was diagnosed, I had been having groin pain, then pain in one shoulder, then one night I suddenly felt ill, with a fever, chills, then sweats, and developed a dry cough. As I was going through this, I felt the pain move from my right shoulder across my collar bone and into my left shoulder. It was all downhill from there. I had a low grade fever from then until the time I was diagnosed a couple of weeks later. I was monitoring my temp daily and it varied from 99 to 100 degrees F. When I went to the ER, then to my doctor before the diagnosis, I kept telling them I had a cough & to check my lungs, but both said they sounded okay. I didn't learn till much later that a cough is a symptom of PMR also.

Prd2122 profile image
Prd2122

Hi I too would sleep for a couple hours and then wake. I found Yogi 'Restful Sleep' started helping and then I started prednisone(previously I had tried alternatives like acupuncture, green drinks, etc.

I would like you to tell me how you made the connection between the vaccine and PMR I too became more ill after a vaccine (but had mild stiffness and achy arms before the vaccine), I have read online that there is a connection between vaccines and contracting PMR My Dr. said it has no connection period.

PMRandRA profile image
PMRandRA

From my point of view on a different thread, I wondered if there was/or is a connection and am actually incredulous that there are so many who seem to have a connection between PMR and jabs, flu or otherwise. My question now is, could this be the cause in many, even if not all, sufferers? I have a doc's appointment this afternoon and will ask him, although he will probably ask me to make another appointment to ask the question! Even if it is not the cause, perhaps the jabs exacerbate the problem.

SweetSue I also had a cough, dry, high up in the throat area and eventually my Doc sent me to a specialist who stuck a camera down my throat. I had acid reflux, he gave me medication which improved it, but I still have the cough, a bit wetter now and a rattley left lung as well. I also have nasty sinusitis. Will let you all know what the doc says.

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