Hi i have been treated for PMR for nearly 3 years now and I am 47

[AliR]

i caught a nasty cold 3 wees ago which has coincided with a flare up so my GP has put me back on 30mg of prednisolone. i wonder can anyone tell me is there a link between viruses and having a significant flare up?

[Polywotsit PMRGCAuk team member]

Gosh Ali, we are not medically qualified on this forum, but we know a few things about PMR. First thing is, it is very very rare in people of your age. So if you were diagnosed at the age of 44 you are a very 'atypical' case. Secondly, you shouldn't be put on a dose of 30mg a day even when you are first diagnosed. It is perfectly normal to feel worse when we have an infection because our immune systems are putting up a fight and going on red alert. The answer is to tackle the symptoms of the infection, I would have thought, rather than upping your dose of steroids. At your age you need to be very circumspect about taking steroids over the long term. Do consider asking for a second opinion. If you are as untypical as you seem, then you certainly deserve to be treated by a specialist rheumatologist. Is there another GP in your practice with whom you could talk things over?

[AliR in reply to Polywotsit]

Thank you Kate I have spoken with many Gps and they all

give the same feedback, I now also have Glaucoma which the specialist says is due to taking Pred. I can only get as low as 10mg with out pain and still getting flare ups. Having further blood tests next week. I am off work this week as the fatigue is bad but it is difficult to get people to understand how I feel at times.

Ali

[guineapig]

I was diagnosed at 41 with pmr ( already had fibromyalgia, herniated disc and spondolysis of spine) which consultant said was unusual at my age BUT IT DOES HAPPEN , 30 mg seems a lot of steriods they started me on 15mg a day I am now down to 8mg a day can't get any lower, and i have steriod injection off consultant when flares happen espeically after viruses please get reffered to a rheumatologist, take care x

[Sue8]

I was diagnosed at almost 49 but had symptoms for a few years. I was started on 20mg but reduced to quick and ended up flaring so was put on 30mg which tackled it and my CRP reduced dramatically. I am struggling to stay on lower doses but at present on 13mg but since been diagnosed with RA also so on MTX which may be helping in reduction but not so sure. I am not prone to viruses so don't know if it affects the PMR.

They do say if you are under 50 you don't fit the criteria, but, There is a lot of under 50's out there as I have found on Facebook page for PMR so perhaps the diagnostic criteria needs revising.

[Bell4796]

Hi I would have the flu jab as this last few months i have not suffered with the usual virus"s which go around and every little thing helps as it stops you wondering what is wrong if something happens with the pmr with the aches and pains, i had an pmr /gca attack again just before new year and iknew what was happening as for once i did not haave any cold or flue aches and pains,now back up to 60mil of pred and full dose of methexotrate but onwards and upwards, best of luck .i have been just over 3.5 years now

[Hidden]

Hi aliR,

I have been on 30mg twice, the second time for a bad flare and headache. Both times the symptoms were gone in 3 hours. Within a few weeks I was down to 20mg. All I can say is the high dose didn't seem to do me much harm, but high blood pressure and ghastly dreams were the main side effects, so make sure you have the meds for the high blood pressure, and remember, the dreams are just that - dreams! Also, you won't sleep for very long so have some rests during the day to catch up.

Pats.

[sjwil]

Hi Also have had Pmr since I was younger. I was actually diagnosed for definate two years ago, but have had some of the symptoms since i was quite young, then I had a abcess in my spine 7 years ago which caused septacaemia and a lot of stress, then a riding accident and broke my back two years ago, I have got over all those things but the pmr seems to have come with vengeance! Everything has been magnified as in symptoms and some days i have been unable to get my daughter ready for school due to pain or feeling unwell. I was put on steroids for the first time 2 and half years ago when i got to the stage i couldnt stop crying with pain. I had actually been put on Citalopram for a few years previous as my Dr said I had smiling depression!!! I knew I hadnt got that, as the pain never went a way and I always keep my chin up no matter what, I have kids and a good farming life. And they never did anything for me anyway. I have been on predsisolone for 2 1/2 yrs now up and down in dosage , take 8 tramadol and 8 co codamol a day and two Amytriptaline at night as I sometimes cant sleep atall. Im starting to wander what on earth to do as im worried about being on steroids so long and all the pain killers which only work if I use Tramadol with CC. (they dont make me fuzzy headed like some probably due to the fact i have had to take o many) but they do take the edge off the pain i suffer. Im currently on 12mg of pred but have had to take more at times then i wean down over time to 10 but cant seem to get lower than this. Does anyone else have the same problem? Is there any hope that this may go one day and why if it is so rare to get it in your 40s is it quite a few people i have met are young and have been told they have pmr?? Its def not Fybromyalgia the symptoms are different. Love to know if anyone else has the same worries and need some one to talk to as my Drs dont seem to be much help they just keep saying take the pills!!!

[Dibs in reply to sjwil]

Hi swil

I can empathise with a lot of what you have written and also took a lot of tramadol, co codomol and even slow release morphine tablets. I was diagnosed steroid dependant depressed nearly three years ago and put on tablets. I tried methotrexate and another similar drug to help me come down off steroids ( I was constantly on 40mg) but my liver wouldnt tolerate them. I became concerned that once on morphine what pain relief was left for me so I discussed with my GP and I am now on bru trans patches which deliver 20mg of pain relief every hour 24hours a day. This combined with daily co codomol when required and my steroids (5mg maintainance dose for life unless flare). As well as all my other tablets.

My quality of life has improved, although I still get the morning stiffness and the usual aches and pains, I am managing a lot better.

I was unlucky to have lost some of my sight due to GCA but I am now coming to terms with it and have gone back to work part time with the help of taxi,s etc. I also use a stick and this helps with my lack of sight and my mobility. I am trying for DLA but have been turned down on appeal, but am going to try again as going part time has had a knock on effect for my finances.

By the way I was 45yrs old when diagnosed.

I hope this has helped a little?

Take care Debs x

[sjwil]

Hi Debs,

thankyou for your reply, friendly support from someone else who knows the type of pain you are going through is a help in its self. I often feel im going mad, and maybe I am a hypochondriac, or drug dependant!! I know I certainly wouldnt be taking pills if I wasnt in pain.

My Doctor first put me on antidepressants because I work too hard, he reckons there are levels people work to, there are the normal everyday type of workers, go to work leave work at work come home and see their family, there are office workers, stuck in an office high stress levels, business owners high stress and then i seemed to be at the top of it all, a farmer/hairdresser, cake making ,fostering, equestrian instructor and yard owner, mother of three of my own and ten of everyone elses, shoulder to cry on , help anyone out, and another ten things on top of this, which I must say i have thouroughly enjoyed being and I thrive on hard work, so stopping for illness has killed me off more than the work itself. #but he called it smiling depression and says that your body can only take so much before the only way to make you slow down is to kick you in the shins and make you feel ill.

This does make sense but I have actually felt this ill for many years not as bad but symptoms have always been around ligering I dont think I have ever had a day without a headache for example that I can remember. I was treated from a young age for migraines all sorts of

treatments.

But I know that this pain is getting the better of me and im actually starting to become a miserable person at times and yes it probably will be making me become depressed. the Dr that put me on steroids was fuming i had been put on anti depressants previously, he said its obvious what is wrong its polymyalgia. this was an old locam Dr standing in for mine. I actually ran for the first time in years with my youngest daughter once the steroids set in I couldnt believe the response. I had tried Gabapentin before this too and all that did was make me sleep.

I had the blood tests and they always said normal as far as esrs but i looked into my results, ( I have to read vet reports etc alot and have studied vet and med etc for many years) So started to look into my results and there are other things showing to do with liver, and mainly my heart. But my Dr says this isnt what he was looking for so not to worry about those!

It is such an efforet to get through the receptionists at our surgery let alone through a doctor (usually up to two hours waiting) and if you want to see a specialist then you need at least a year on a ist here! Wales is not the place to live for health!

I just put up with things in the end and plough on but just occasionally like now it bites me in the bum and gets to me, mentally I have had enough and cant understand why me.

I really would like to see if I stopped taking steroids all together what would happen but if you get down to 5mg I serously cant move or do anything. Tieredness sets in badly and i cant afford to be like this, i have family dependent on me and a life on the farm that will never change I just wish I could find a way to be set free from all this. Im not good at accepting illness! The other horrid part of this is the weight gain. I have put on loads of weight and that is so unhealthy. Forgetfullness or confusion is another pain in the behind sometimes even spelling a simple word can be oddlyhard.

Is there anyone else who feels in this rutt. I do also see other people with much worse illness and think myself lucky in someways that I do have a life left. So I would never tell anyone outside here of my feelings even my husband or children dont know how bad im feeling. I think they see it sometimes but they just shout at me that i should go and sit down, they sont realise this makes it worse and the more you sit down the more there is to catch up on.

[AliR]

Wow it is good in some ways to know that there are peple out there who are young and have been diagnosed with PMR.. I do feel lucky though has I dont think my pain is has difficult to manage as others out there, but when i am going through a flare-up like now my friends and family of course give me kind words but like you sjwil it is to take it easy and sit down, I have a very undestanding work place who make me take time off when I am unwell, but when you described how you were feeling emotionally then you could have been writting about me, but I do keep it all bottled up, i worry that if i let it out then there is no way to control it again. Wow again that is the first time I have said that.

[Dibs]

I think the problem with me is that this is not a common illness and therefore family and friends do not know what I am experiencing. If it was a broken leg for example they could see I was struggling and offer help. Not so with this illness.

I nursed both parents before they passed and always told myself I wouldnt wish this on my children( I have four). Now, I do not know how to ask for help as I became so independant after my divorce, bringing up the four children aged 13 down to 5 on my own.

Not being able to do the usual everyday chores because of pain and stiffness and now loss of sight turned me into a recluse. Nobody to talk to about how I was feeling with the children leading their own lives and isolated in the country had a very negative effect on how I was managing myself. The pain, I believe, became so much worse through not sharing as it was all kept in check, stiff upper lip and all that. I became very depressed and if it was not for my dogs I may not be here writing this. I put on four stone in weight and had the usual moon face and didn't like anyone to see me.

It has taken time to get to this point in my life now. I have managed to lose weight, although not all of it yet. I am managing my pain a lot better. I am trying to explain to my children how I feel on any given day, although hard as it is as it doesn't come easy to me.

I also live in Wales and find that after four years of having this illness, my rheumatologist is starting to accept me as a patient. The last appointment he was almost human in his approach to me and he actually talked to me not at me.

I call this the silent illness as it creeps up on you just when you think you are going to have a goodish day, bites you on the bottom and says hey did you miss me! I didn't use to have the energy to say NO, but now I do. Instead of it controlling me I'm going to try my best to control it.

Hugs Debs x

[Hidden]

Hi Debs,

Perhaps the only way your children will begin to understand what it is like for you is to print off the last two replies you have made and let them read them. I gave my youngest daughter a book to read on coping with the side effects of prednisolone, and I think she began to understand how it was for me.

I am fortunate in that I have a very supportive partner and my two daughters have both left home and are well on their way in life, but before I developed PMR, I too had a really rough time for 3 years and PMR raised it's ugly head.

I don't know how you have coped - the huge amount of drugs, the flares, little support from your doctors, GCA, and pushing yourself on despite the pain - you really should not have done that, but I guess you had no option, and yet, you are still here to tell us the story. I don't know how you've done it, but your still going and up for a fight.

I admire you so much, but rope the kids in to help if possible. You need more help to get better!

Best wishes, Pats. xxxxx

[Dibs in reply to Hidden]

Hi Pats,

Thank you for the above and you are right I may do so in the near future. My daughter has just had her second baby and it really pains me that I am unable to get in the car and see them both. But they are both healthy and the thought of new life is a tonic.

Even though you have a supportive partner do you feel alone sometimes? I think this is such an isolating illness. There is not much in the way of literature for the kids to read so that they can understand even if they do read how I feel.

My son came home from playing rugby the other day with a sprained ankle and oh the fuss he made. When I said that I could empathise as I get a lot of pain, he said that I really shouldn't sit but move around as this would be better for me. I tried to explain but to no avail. Perhaps it frightens him?

Any way more snow now to top up the six inches that we still have. I can't see my little dog in the snow and the spaniel looks like a yetti with the snow clinging to her fur. At least the Labrador loves it. My saviours.

Thank you again

Debs xx

[Hidden]

Hi Debs,

Yes, I do feel alone, often. When I feel that way a quick visit to this web site usually helps. I find I talk more on the phone too now. I guess I'm just desperate for contact with other folks. We lose so much when we can no longer get out there and 'get it on', so to speak. There's also the money aspect of course. I had to give up my job because of PMR and now I can't just go shopping like I used to - I really do have to watch those pennies.

I think you're probably right when you say that your son may be a little scared regarding your health. It's only natural, after all your the one who's always been the carer, and strong. And let's face it, we really don't look ill most of the time - even my doctors seem to think I'm making a mountain out of a mole hill I'm sure. My rheumy seems to be using me as an exhibit nowadays - there's always an audience waiting when I go in - It annoys me to have to 'bite my tongue' when she comes out with remarks like, 'Well, now you're on 9mg of steroids, I think you're no longer in danger of getting GCA as your PMR is well under control'. 'Really!' said I, but thought, 'Oh Yeh?'.

The snow is beginning to go here in the SW but now the rains coming in.

I can't have a dog because of my British Giant rabbit, Lewis, he just lies on his fur bed and eats and eats. Heaven knows what he weighs now. When dear old Lewis has gone, I hope to get a dog. I hope to be better by then and walking out a lot.

Roll on spring!

Pats.

[Tobytomtom]

Hi

Had same, reduced weekly from 60 to 20 but has blood test which showed had infectio. My doctor told me to go back up to 45 however had appointment with consultant 2 days later who said stay on same (20mg) as may not be related. He took another blood test and 4 days later showed no infection..... He said if my headaches were manageable stay on same for week and then start reducing again, mine is by 2.5 a week reduction from next week.

If had done as doctor asked would still be on 45.

Not saying don't listen to doctor but if he is a local GP not sure he may understand the condition fully. Ring your consultant.

[Mrpip]

Yes....like the flu

[hjbradshaw]

Like quite a lot of others here I am atypical and was diagnosed at 41, 15 years ago. I was put on 30mg when I was diagnosed by rheumatologist and my symptoms improved dramatically then. Of course we gradually reduced the dose as you cannot stay at that high dose for long, and over the years I have gone up and down in dosage terms and am currently on 7mg, hoping to get back down to 5mg at some stage. Have never been able to get below 5mg without a major flare but am still hoping I will do one day! I have developed diabetes as a result of being on steroids but my HbA1c (the test they use for checking your levels about twice a year) has remained stable without any need for medication, and I have not really changed my diet-am just more aware! I have put on a lot of weight over that time, very slowly, but am not sure how much of that is also due to poor mobility rather than the steroids!