My PMR started last year after flu jab I am due to have another next month and shingles jab, should I risk it?

[Appleby]

[Hidden]

Hi Appleby,

You have not said how your illness is progressing. It would be helpful to know how your health is at the moment.

I suppose that it's virtually impossible to say whether there is a link between the jab and PMR, but as the jab is not a 'live' vaccine it's very unlikely to spark PMR.

I have received the flu jab for the past 2 years, whilst suffering from PMR, and felt no ill effects at all. I also developed shingles in my first year of PMR and rushed straight to my GP who gave me an anti-viral jab which lessened the symptoms greatly.

To get flu whilst having PMR could be very bad - the illness might flare massively and if you are being treated with prednisolone, your immune system will be under par and the influenza would be very severe. Personally, I would have the flu jab and, if your GP thinks you need it, also have the anti-viral, but, ofcourse, it's your decision.

Best Wishes,

Pats

[trish29 in reply to Hidden]

Hi Pats .and Appleby .What an interesting question about the flu jab and PMR because for the last 2 years after having the flu jab a short while after both times I went down with the NorusVirus. So this year I am really scared to have the flu jab. I have a meeting with my GP on the 3rd Oct so maybe I will ask about the antiviral jab as well.. I've never had Shingles but have had PMR for 9 years. Keep well both of you. trish29

[Hidden in reply to trish29]

Hi trish,

I realise that when this horrid virus hit you for the 2nd time you must have felt that there was some connection to the flu jab, but was it more likely that you picked it up at the GP's surgery or in any place where there were gatherings of people?

If you were on pred at the time your immune system would have been weaker and you would possibly been even more susceptible to noro as it is very easy to catch.

Saying that, who really knows? I think most folks are fine with the flu jab, but when I worked in 'care' some of our clients were 'off colour' the day after having it although it never seemed to spark any lasting illnesses.

How are you doing after 9 years Trish? I'm heading for year 3 after my 2nd flare following a recent wrench injury to my shoulder. Over doing it as usual. I had got down to 6mg and was feeling fine, but after the flare had to put the dose up for a month to 10mg. Started dropping by half a mg yesterday - feeling OK.

Pats.

[trish29 in reply to Hidden]

Hi Pats its nice of you to reply to me and Yes I was on Prednisolone and Yes I would have had the flu jab at my Gp's medical Practice.. It just seems strange that it happened 2 years in a row. You ask how my 9 years with PMR have been and I can say that it's been a long and rough road.. There has been some better times when I have been able to get down to 0.05mg pred but never any lower.. Methotrexate and Azathiaprine have never agreed with me but I may have to try them again in the near future .I just keep reading other sufferers posts and know that we are all trying to get off the pred and to get our lives back. I always feel so sorry when I read that people are almost off the pred and then they have a flare and they have to go back to the higher doses again. I have got a good Rheumy this time around and I'm trying to come down really slowly. Like you say we are inclined to overdo things, I always feel guilty that I have got this condition and can 't keep up with everyone around me and my exhaustion levels are just unbearable. Good luck with your pred reduction and I hope you don't get anymore flare-ups..Thank you for caring. trish29

[Hidden in reply to trish29]

Trish,

hi, yes, guilty! Know just what you mean. Apart from the weight gain and chubbier face etc I look in the the mirror and think how normal I look. No wonder others wonder about this weird illness - 'just how ill is she?' We feel rather guilty sometimes because,often, we look quite well.

But, what can we do? Nothing, except battle on and the longer it takes, the more frustrating it is.

Still, at least we that have PMR/GCA understand. This site is so valuable!

Thanks for the kind thoughts. And, by the way. I have had much more 'burn out' as I call it since upping the dose. Wheh I was on 6.5mg and less it virtually went.

Just one more thought - STRESS - how much quicker might we recover if that monster was removed?

Pats.

[trish29 in reply to Hidden]

Hi pats. Yes I agree with all you say re the weight gain and my horrible chubby face .. My main hate is the exhaustion!! I try everyday to get through the tasks I have set myself but usually find I can't complete them until maybe later in the day after a rest. About 4pm and I start to feel a bit better. I feel guilty that Appleby and other sufferers seem to be so positive and I wish them all well. I have also had my Positive times but I didn't think I would still be suffering with PMR 9years down the line. Not being able to walk due to the pain in my spine and legs stops me from exercising as I would like to do ,but I have now got a fold up mobility walker with a seat and I can walk a little way with that . It is better for the spine as I stand straight ,more so than with a stick. I have accepted my condition more since joining PMR/GCAUK and the support has been wonderful take care Trish 29

[Whittlesey in reply to Hidden]

yes, thanks, Pat. This is part of it. It is one of the harder parts. And then to have to go into -- "well I have this illness -- my arteries are inflamed" and then sometimes people get a little alarmed -- and you try and explain, "there are times when it's pretty bad and other times, when I can deal with it." And I , also agree, overdoing it causes true problems. Your post from the other day was so excellent, I have sort of kept it -- the advice, which is very good. If you don't feel good, have a beverage, etc and lie down, no matter how well, people around you, tell you, that you look. I agree, we owe that to ourselves. Thank you for the wonderful advice. To all of our recoveries, from these diseases. all my best, Whittlesey

[Appleby in reply to Hidden]

Hi Pat and trish

[Appleby in reply to Hidden]

Hi Pats and Trish,

Thanks for your response. In answer to your question Pats, at the moment I am suffering from a flare up. The GP has put the pred up from 6mg to 10mg but unlike in the past it is not working. This flare up is mainly affecting my shoulders, neck and ribs really hurt when I take a deep breath, the soft tissue at the base of my middle finger and index finger has also swollen making using that hand really painful. All symptoms improve by about 4pm but first thing in the morning is very painful and make it difficult to get up and washed and dressed . Thanks for advice on flu and shingles jabs, I will have them.

Appleby.

[trish29 in reply to Appleby]

Hello Appleby. Soo sorry you are suffering a Flare-up !! This PMR is such a horrible condition Like you say after about 4pm we usually feel better , but it's so late in the day to get on with things .It seems to me that the increase in the Pred isn't high enough for you to take the pain away. I know when I have had my bad Flare-ups I usually have to go up between. 12.05 or 15.00mg .. Have you had extra stress recently or been overdoing it ? Thinking of you and hope you are feeling better tomorrow . trish29

[Appleby in reply to trish29]

Hi Trish,

Thanks for reply. Flare up became much worse and I am now back on 30 mg pred. Since Monday and worryingly it is not working very well, only slight improvement Main pain is in my neck and shoulders, particularly my left shoulder. Incidentally, I have made enquiries myself at surgery and because of the high doze of pred. i will NOT BE HAVING SHINGLES JAB. The info on pred. does say one should not be iven a live vaccination and the Shingles Jab is live. I will risk the flu jab though even though I blame it for the start of PMR with last October's jab. Best wishes to you, Appleby.

[Whittlesey in reply to Appleby]

Hi Appleby, Pats, and Trish,

The GCA can sometimes affect other arteries. I have been diagnosed w/GCA (U.S.) and have had two aortic artery scans. It has affected my cartoid and vetebral arteries. They are dissecting. I may have a stent placed in my cartoid artery, because apparently an aneurysm has developed. It can affect any of the large vessels or arteries, including those in the shoulder, lungs, and back. The areas in my back that have been diagnosed with dissections are areas that cause me pain when standing, walking or sitting for long periods. The MRA (MRI of the artery) can reveal if the GCA is present there.

From what I understand the only true way to know if an actual artery has the GCA is a biopsy of the artery. The really can't be done with aortic, cartoid or other vital arteries, because after the biopsy, they are tied off and no longer function. Outside dissections let the rheumatologist know that that artery is affected.

Even though the methylprednisolone can affect the muscles and nerves, the disease itself can affect the arteries involved. That may be the problem, if it doesn't resolve with regular treatments for this area.

They are currently giving me coated aspirin and methotextrate in addition to the methylprednisolone for this. Am investigating biologics which inhibit the growth of the killer T cells which seem to do the most damage with this disease.

Hope you feel better.

all my best, Whittlesey (NY)

[Hidden in reply to Whittlesey]

Hi Whittlesey,

What an awful lot you have to cope with at the present and you seem to be dealing with it all so valiantly. I wish you all the luck you need.

You really seem to have a good understanding of your condition - well done you!

As far as I know, I only have PMR, and you, like many of our members, have so much more to deal with. Makes me feel like a 'big baby'.

Thankyou for your good wishes,

Pats.

[Hidden in reply to Appleby]

Hi Appleby,

I think if you've been on 10mg for say a couple of weeks and it's not working, then you need more. Perhaps 12.5mg and go for a week. See how it goes. No one wants to up the pred, but the illness must be knocked back. It can get much more dangerous if it's allowed to rage and it's nothing we can see coming.

Yes, the pain in chest and neck and painful hands - even to the point of losing sensation. Horrid and rather scarey too. I think the inflammation in the shoulder muscles puts pressure on the nerves to our hands. It all got better when my PMR died down.

Also, the surge in energy in the late afternoon and evening - my take is that's when the pred is at it's best and doing it's job.

Good luck,

Pats.

[optimist-ok]

I was interested to hear about your shoulder injury, Pats. I am up to yr 2 of PMR & GCA ;a yr ago last June the long biceps tendon ruptured in my right shoulder, just reaching up to a cupboard. Agony! Then this yr there have been 2 other tears to the same shoulder, no particular activity to cause this - Dr blamed it on steroids weakening muscles & tendons. Apart from the awful pain it has badly affected mobility. Finally got an appt to see a shoulder specialist on 27th Nov.- better late than never? In the meantime I am having private physiotherapy which has helped tremendously, I can drive again! Also have had to increase steroids & methotrexate this summer, unfortunately. After reading other messages re. 2-3yr time of conditions I wonder if this was plucked out of thin air?

[Hidden in reply to optimist-ok]

Hi optimist-ok,

My PMR was awoken in October 2010 by a wrench injury to my left shoulder. 2 months later after the pain had spread to my right shoulder and hips, I had a body that was virtually rigid and full of pain and I had to fall out of bed to get up.

I have struggled with PMR for over 2 and a half years and, at last was down to 6mg and feeling virtually pain free and energy levels well up - felt good. Then 6 weeks ago did something supid - won't bore you with the details, but wrenched my right shoulder, agony!

Over the next few days the pain spread to my other shoulder and into my hips. I felt horrible - PMR back, ugh! Pred up to 10mg and it took a while to work - at least 2 weeks. Slowly, with the help of ibuprofen, the pains got less and now feel much better. 4 days ago dropped to 9.5mg and never noticed.

I completely agree with your doctor, pred damages the tendons etc and that means we have to be careful with the exercises because damage can occur much more easily. I think the think the soft tissues of the body can regenerate, but it takes a long time. I no longer get painful tendonitis which I had a lot on the higher doses, but after my accident I realise that I must be very careful.

When my PMR returned it was not as bad as when I first got it and I hope that it is on it's way out.

PMR/GCA, well what can we say about time to recover when dealing with these illnesses. I guess that there are no rules. There are the lucky ones who recover in 2 to 3 years ( and does that include the time it takes to get off pred by waking up the adrenals successfully?) but many have these illnesses longer, or recover and have one or both return at a later date. Many folks suffer from other diseases too. That means multiple meds and extra stress. A life that is free from too much stress is good when it comes to helping the adrenals recover. Our glands need to be in good shape to keep PMR/GCA at bay.

Best wishes,

Pats.

[optimist-ok in reply to Hidden]

Many thanks for your kind reply. Good luck with your progress. I am on 10mg steroids at the moment, & 12.5 methotrexate, having been down to 5mg & 10 but the GCA symptoms came back. Better again this week, just recovered from the 2nd kidney infection this summer. That really pulled me down. Shoulder is so much better, though, for the private physiotherapy. I can now raise that arm above shoulder height & drive longer distances. Will be interested to know what the specialist result will be! If I do too much (not much anyway!) I do have trouble focussing in the distance & get double vision which is a worry & a nuisance. Obviously we need to go very gently even when feeling more energetic. Best wishes to everyone.

[Runrig01]

Hi Appleby,

I developed PMR symptoms in Oct 2011 4 days after flu vaccine. I have been told it is possible that the adjuvant that they add to the vaccines to switch on the immune system may have caused my immune system not to switch off after the vaccine was delivered, resulting in PMR. However I also suffer with asthma and work on the frontline of the NHS And was advised by my Rheumy to have the vaccine the following year. Her arguement being if I came down with the flu it could trigger a bad flare. So I did have it last year had 3 days of increased muscle stiffness, but then seen a physio who did deep massage which relieved the tension. I still plan to have this year, although will wait till I'm on a stretch of days off so it does not interfere with work. Hope this helps, Runrig x

[polkadotcom]

I've been having a flu jab for getting on for 20 years and have never had a problem even once I was diagnosed with PMR. Mine is scheduled for October 12th so hope I don't have to eat my words then!

[greenlander]

I wouldn't worry about the flu jab. But the shingles vaccine is a different matter. I have GCA and my rheumatolagist says I should not have a live vaccine - which is what the shingles vaccine is.

[kate1978]

I have only been diagnosed with PMR very recently and had never even heard of it before! I have had pneumonia and pleurisy and been in hospital twice 11 days then 7 days. The PMR came after, I just thought it was muscular pain at first, it got so bad I went back to my GP and I am now on 15mg of predisolone, and see my Doctor again in 2 weeks. I have been having the flu jab every year for a few years now with no ill effects up to now and will have it again this year, fingers crossed! I really dont know too much about this condition and would welcome any tips or advice

[polkadotcom]

kate1978, I would suggest that you read through all the information on this website. It's safe, reliable information and there are some very dubious sites to be found on the general internet.

As you can see, you can post any questions here - there is usually someone around to answer. As for PMR, hardly any of us had heard of it before being diagnosed and those who had generally had/have a family member already in it's grip.

I hope you turn out to be a text book case - put on steroids, given a long slow steady reduction and then off the Prednisolone in 2 - 4 years. If that sounds a long time, there are other medical conditions which require steroids and will require them forever, not just for a couple of years.

Happy reading!

[jinasc]

WHAT YOU NEED TO KNOW ABOUT THE SHINGLES VACCINE.

The first link is to the Public Health England.

The Second Link is to the Patient Information Leaflet provided by the Manufacturers of the Product.

1. Organisation: Public Health England

Page history: Published 23 August 2013

gov.uk/government/organisat...

2. The Patient Information Leaflet (PIL) is the leaflet included in the pack with a medicine. It is written for patients and gives information about taking or using a medicine. It is possible that the leaflet in your medicine pack may differ from this version because it may have been updated since your medicine was packaged.

Para 2 What you need to know before you receive ZOSTAVAX

Line 3 if you have been told by your Doctor that you have a weakened immune system as a result of a disease, medicines and other treatment.

medicines.org.uk/emc/medici...

FLU JAB

There are two types of flu jab - you should not have the 'live' one.

[Annodomini]

I've had flu jabs for around 20 years and had no ill effects. However, this morning I had one and later felt quite shake and discovered that my left hand was trembling. Now I've had a snooze and feel better. I think my body felt a degree of shock having something foreign injected into it! Optimist, you have thrown some light on the pain I have in my upper arms. I have awful swollen and painful Achilles tendons and now the upper arms seem to have joined that party. When I was coming home from Scotland last week, my suitcase caught in something on the station platform and wrenched my right shoulder backwards, which caused me more pain than I would normally have expected. It's taking some time to recover and driving is far from comfortable.

[jinasc]

kate 1978

Go to pmrgcauk.com/index.html and pmr-gca-northeast.org.uk/

You will find a ealth of information, including the BSR Guidelines on Diagnosis and Treatment of PMR and GCA. Patients Stories, a list of support groups and other useful information. Knowledge is Power.

[Green_girl]

My GP said that each year's flu vaccine is different and some years people will have side effects and other years not. Also it is not a live vaccine so I agree that it couldn't, of itself, have been the cause of the PMR. Unbeknown to the individual, there could have been something else brewing - maybe big stresses, or another virus and the jab just triggered a response.

Until PMR I would never have had the jab as I was as fit as a flea and had a good immune system. I have to say that I'm unsure about having it again as it only protects me against currently known flu types. If a new one is around, it will not protect you. But if you have other conditions such as diabetes or asthma or are physically frail, it is probably worth it. Decisions, decisions!!

As for the muscle issues....yes! I too have had a strain which will not heal and my physio told me why it might be. Pred not only takes over your adrenal response - but also the collagen one. Collagen is what your body produces to heal strains and muscle injuries. So if you are low on steroid but your body has not yet started to wake up and produce it's own responses, when you injure yourself the body cannot heal itself, as the collagen response is not there. Yet another very good reason for reducing very slowly, little by little, to help our bodies wake up slowly......

Never had shingles and don't want it - my huge commiserations to those of you who have. It sounds horrid.

[jinasc]

Extract from: gov.uk/government/uploads/s...

If you are allergic to hen’s eggs or have a condition that weakens your immune system, you may not be able to

have certain types of flu vaccine – check with your GP.