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
EileenH Cyn1965
Posted
It doesn't stem from a virus - the virus may be the final straw that sends your immune system into a tailspin but it didn't directly cause the PMR we talk about here. There have been various suggestions but no-one knows how exactly things go wrong.
It is a chronic illness - at least IRO 2 years (whatever doctors might lead you to believe) and only about a quarter are able to stop taking pred in up to 2 years, then have a higher likelihood of having a relapse later as Danrower did, half are able to stop pred in up to 4 to 6 years. And the rest of us have it even longer, 5% need pred for the rest of their lives.
Having felt so much better on your pred - did you then go back to trying to do things as normal? That isn't a good idea - it often makes you feel as bad as you were without pred! The pred only relieves the symptoms, it cures nothing. It just makes the pain and stiffness better so you can live a relatively normal life until their underlying cause, an autoimmune disorder that makes your immune system unable to recognise your body as self so it attacks the cells as if they were invading bugs. This is what makes you feel as if you have flu on a permanent basis - and it is quite possible that your "virus" could have been the start rather than the cause. But you will never know. The rest of PMR, the fatigue and feeling or weakness, has to be managed by you with pacing and resting appropriately.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
is a link to our resources post - and right at the bottom is a link to articles about pacing. You will also find various threads about living with PMR and pred if you go to my profile page on this site and look at my discussions. Simplest of all perhaps is to Google "fatigue, pacing, spoons and a gorilla" and you will get a link to the HealthUnlocked PMR forum and a post I wrote there with a set of links to articles/blogs about those topics.
lilian05079 Cyn1965
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Are you saying your doc put you on preds without ordering any blood tests for inflammation?.....
Cyn1965 lilian05079
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ptolemy Cyn1965
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Cyn1965 ptolemy
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Porgi Cyn1965
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Hi cyn l have PMR and understand that PMR can be caused by a virus, infection or trauma. I had reactive arthritis which is also caused by a virus a few months before I developed PMR and at first the rheumatologist thought it was the arthritis which hadn't cleared up properly but two days after being put on a steroid the pain and stiffness went a sure sign I had PMR because the symptoms of reactive arthritis are alleviated as quickly. Has your doctor done any tests totry and find out what is causing your symptoms because they could be caused by any number of things?
Cyn1965 Porgi
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Cyn1965
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https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica
Here is one stating 10-15mg
As a health care worker myself I would tend to believe that if you can take the lowest dose possible all the better for your body. What if you start at 15 or 30mg? Then you have to try to taper much longer...
EileenH Cyn1965
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There is that aspect - but I would suspect that if many doctors take note of that article there are a lot of people around in the USA who have been told they don't have PMR for several statements that are to be found in it that bear little resemblance to real life with PMR.
The top experts in the USA and Europe got together to creat the Recommendations for management of PMR published in 2015. They are at least realistic.
Cyn1965 EileenH
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Cyn1965
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lilian05079 Cyn1965
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Hi Cyn1965
When i was initially on pred i caught all the colds and flu out there even though i had flu injections. The aching and pains were due to the flu virus which paracetamol dealt with. It's because preds suppress our immune system and we have no protection from germs. The only thing doc prescribed was paracetamol plenty of liquids and to stay in and keep warm and rest until the flu abates. The preds should help the asthma if it isn't doc may prescribe an inhaler. If you have a throat and chest infection you will need antibiotics..my best wishes to you Cyn1965 for a speedy recovery it's awful to have to deal with flu and PMR i do empathise with you...but chin up think positive...
Porgi lilian05079
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I'm catching every cold going and the doctor doesn't think I can catch flu because I've had the flu injection but as you know Lilian I'm off the steroid. How long does it take for your immune system to recover? I've started the probiotic pills but only about a week ago.
lilian05079 Porgi
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Hi porgi
It will take some time as the adrenals and immune system to recover as they work together. I have been taking high dose vit c 1000mcg daily since i was half way through pred ....i did not get flu last year or this year thus far...but i did refuse to have flu jabs as i think they didn't help at all when i was on pred ...my adrenals are getting back to normal function gradually and so is my immune system with help of vit c.....vit c also helps adrenals..if you do not take vit c start taking 1000mcg and continue with probiotics for good gut flora...my very best wishes to you porgi..
Porgi lilian05079
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thanks lilian. Gosh the costs are mounting up what with probiotics costing £16 for a months supply, now Vit C, and over here all all repeats are free for over 60s plus in Scotland the under 60s get them free as well, still it's worth it if the Vit C works. I'll have a go at getting both on Repeat when I next see GP. Due to see gastroenterologist on Thursday and am going to print out details of Sjogren's syndrome and ask if he thinks I might have that. No news as yet re physio or rheumatologist appointments.
EileenH Cyn1965
Posted
Many doctors will increase the dose of pred slightly.
It isn't something that I have a problem with - rarely get a cold and when I do it isn't significantly worse. I know a lot of people who also find the same - so we are a bit nonplussed at the insistence pred makes you catch more colds! But especially when you are at the lower doses of pred, under 9 or 10mg, your adrenal glands are struggling a bit to deal with a response to the infection because of the suppression by the pred - even if you are on only 10mg, if it is long enough adrenal function is reduced significantly.
EileenH Porgi
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"the doctor doesn't think I can catch flu because I've had the flu injection"
There are several forms of flu out there that weren't included in the vaccine - so it doesn't protect from them. Now that is something I'd expect a GP to be aware of!
Porgi EileenH
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Yes but as you know I've been struggling to make him aware of many things to do with PMR
lilian05079 Porgi
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Hi porgi
I would think your doc will give you a script for vit c. You've actually given me an idea..it never occurred to me to ask doc for a script for vit c....i live in UK and will ask my doc when i see her this week. Thanks for that!.It's not preds that are directly the cause of colds and flu it's their mechanism of action that suppress the immune system which in turn weakens the ISystem which makes us susceptible to colds, flu and infections. I do hope you can get your rheumy and physio appointments soon..is there any possibility you can contact their secretaries or send them emails..or pehaps when you see your doc ask her/him to send rheumy/physio an expedite letter to bring your appointments forward. Regarding Sjorgens I was given eye drops/ artificial tears and mouth spray/artifical saliver to moisten the mouth i did not have Jorgens it was a side effect of preds which you may have....it took a few months to abate after stopping preds and it has completely gone now. However, do get it checked incase you do have Sjorgens Syndrome I wish you well porgi ....with you all the way...you will get there just keep your eye on that light at the end of the tunnel...
EileenH lilian05079
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I would think it is very UNLIKELY a GP would provide a script for vit C unless someone has an approved condition. A 2015 Advisory says:
"Approximately £4.2 million is spent annually in England on the prescribing of vitamins and minerals (multivitamin and mineral supplements excluding vitamin B compound products) (ePACT February - April 2015). As with all prescribing, individual patient circumstances need to be borne in mind and certain people should continue to receive prescriptions for vitamins and minerals. However, all patients should be reviewed and any prescribing not in-line with an ACBS approved indication should be discontinued. Patients should be advised about dietary intake and any patients who wish to continue to take a vitamin and mineral preparation should be advised to purchase them over-the-counter from a community pharmacy. This will release cost savings for the NHS which could be invested in improving local healthcare services."
lilian05079 Porgi
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Hi porgi
I imagine you have seen Eileen's post re: Vitamin C script from your doctor. Don't let it put you off still request the script as i think they may give it to you due to the fact you have just come off preds and you are trying to get your adrenals functioning normally again. Also that Vit C does play a part in adrenal support. I may not get it as i am a bit further along than you with normal adrenal function.....my very best wishes to you porgi..hope you get the script...
Porgi lilian05079
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GP may well give me a prescription for vitamin c because he texted me recently and found I am very low on it. Plus I was tested well over a year ago and he found I was low then. I don't know why he hasn't already suggested I take them and put them on repeat probably hoping I'll buy them which I did for a while but have to confess I got lazy taking them and stopped..Would I be okay taking them with probiotics and other drugs I'm on - ranitidine, fultium, hrt, allopurinol, what do you think?
Porgi EileenH
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Porgi lilian05079
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Forgot to say in last post that I had a letter from physio dept yesterday and have new telephone appointment in two weeks. Also gastroenterology thisThursday this week so will let you know the result. I've printed out the info on sjogrens to take with me.
lilian05079 Porgi
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Hi porgi
That's great news!....hope all goes well for you...keep us posted...my very best wishes to you porgi for favourable results with all your appointments....
lilian05079 Porgi
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I take 1000mcg with other medications, but erring on the side of caution check with your doc regarding dosage and taking with other medications....my very bedt wishes to you porgi....
EileenH Porgi
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Are you sure it is vit C he's measured? Not vit D?
I wouldn't have suggested to someone to take vit C - I don't ascribe to the concepts it stops colds and works miracles. If you eat plenty of fruit and veg you shouldn't get deficient.
Porgi EileenH
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Because of my trouble swallowing I can't get enough fruit and vegetables down. I can manage steamed vegetables but have to have them very well done so they're soft enough to get down and the only fruit I can manage are bananas, good for potassium but not vit c I think. I think he did test for vitamin c, d and a iron and I've long had a problem with iron, at one time had plasma transfusion such seemed to work for two weeks then I was right back to a low level. Apparently I lack something that allows it to be absorbed by my body. He did a test early September then when I was on holiday got a phone call asking me to go to a local GP and get it done and the results emailed back to him. Then he's done the tests, each time I've seen him but said that they're what he expected. So I'm in the dark about the exact results. The trouble is whenever I ring for results he's not there and it's a receptionist who reads it out, at one time I asked to speak to another doctor about them but they're no clearer about the results . I suppose I should be formed with them but I get worn out with it all
ptolemy Porgi
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Porgi ptolemy
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Good idea thanks. When I ring for them tomorrow I'll do that
EileenH Porgi
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You need both vit C and iron to absorb iron - so that could be linked of course. There is some vit C in a banana but not a lot - not like in oranges,
If there is something wrong - why isn't it being dealt with? Seems strange to me!
Porgi EileenH
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Seems even stranger to me. I think I'm just too much work for him and because he doesn't know what's wrong he just ignored it for so long but hopefully I'll get sorted now he's referred me to the gastroenterologist and rheumatologist. But I shouldn't have had to fight to see specialists when I'm so ill. I think it's because I live in a very small village in the highlands and the GPs here don't keep up to date. As I posted in my reply to Lilian I see the gastro man on Thursday, have a telephone appointment with physios in two weeks and am still waiting for appointment with Rheumatologist, maybe when I've seen all of them I'll be treated for whatever ails me. I still think its the PMR and I should be back on Prednisolone or another steroid. Interestingly my daughter in law messaged me this morning - she has Graves disease which is another auto-immune condition linked to the thyroid. She's been on steroid tablets which didn't work, then they gave her higher does via infusion, then put her on higher dose tablets, anyhow she says she's now shaking all over and can't sleep because of it. I'm wondering if it's because she's not absorbing the drug so its like being withdrawn too quickly from the steroid. I've told her to make a note of all symptoms especially the shaking and show it to the consultant when she goes on Friday because she's getting disillusioned. I'm going to start a new discussion about Graves asking if there's anyone on this Forum with it as I think it might help her to belong to it and get guidance from others with it.
EileenH Porgi
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I know another lady who used to live on Orkney who had an excellent GP - and although the Vale of Strathmore is hardly remote, I had a superb village GP who I found when fleeing the other lot who were awful and nearly killed my husband by their sins of omission. There are useless ones in towns too!
Anhaga Porgi
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Porgi, I think you should ask advice either from your doctor or, almost certainly better, a registered dietitian, about the ideal dose of Vitamin C for someone in your position. There are problems with long term high dose Vitamin C, you can google this, high dose being in the range of 500 mg and up. Also it's most likely that vitamin C from food is better absorbed than from a supplement. Can you not juice your high vitamin C fruits and veggies, or is there something else which makes it hard for you to consume them? More than 1000 mg in a dose is likely to mean most of it is excreted, not absorbed. I wonder if a couple of smaller doses would be better? Questions to ask someone who really knows.