my journey with polymyalgia rheumatica

Hi Eileen, was really interested to read that you had PMR for so long, the interesting thing for me was that I woke up one morning about 4 years ago and could not put any weight on my right leg due to    pain in my hip, we were in Florida on vacation at the time and went straight to a walk in clinic where they gave me an injection in my hip and some pain killers and within 5 hours it was gone, I never thought about this until I started not to feel well and a lot of pains in my joints, the strange thing is that my urine started to smell different, my doctor thought I was mad, before all this started I had had 3 knee replacements so I was used to pain. It is only in the last 3 months that I have seen a very good  rheumatologist who has  done many tests on me, I am seeing him privately, otherwise this would have gone on and on, he has come to the conclusion it is PMR, but will not start me on preds until the bone in my foot has healed, this is on the advice of the orthapedic surgeon, so will have to wait another 2 weeks, was really worried about going on preds but realise by reading all these letters it is the only way to get my life back. thank you so much for being there.

Hi Vanessa and welcome. 

Yes, it would be interesting to know whether it would have progressed at that time without the cortisone injection then. Although I can identify that 5 years as being PMR because the symptoms were fairly clear as each appeared it just wasn't put together - mainly because I was in my early 50s at the time so "too young" and my blood levels have never been raised, they are actually very low for my age - I am sure there had been individual signs and symptoms for years before that. I'd had what was possibly the herald illness for ME in my 20s but that eventaully disappeared and I thought no more about it. 

Mmm - funny about the urine bit too. I'm sure there is something there at times too but I have always thought it was maybe UTIs which I'm quite prone to. But it has changed in the last few months and I notice a different smell when I'm having a bad day. How very strange!!!!!

Being on pred isn't a picnic in the park - but it can be infinitely preferable to what can develop with untreated PMR. Above all, the pain relief is amazing. I was put on pred for 6 weeks initially and within 6 hours I could walk up and down stairs normally for the first time for months (years really). When I stopped the taper of 15 for 2 weeks, 10 for 2 weeks and 5 for 2 weeks I was in tears in bed 26 hours after taking the last tablet. It felt worse than before - but that could just have been the contrast. I am sure had I been left on 5mg at the time I would have been OK but the allowing the inflammation to get a hold again made it more difficult to reduce again. It's taken me four and a half years to get back to 5mg with a lot of rocky moments on the way. The biggest revelation in that time is the importance of reducing in very small steps - 1mg at a time is more than enough even from the start and spreading that 1mg over a couple of weeks at least makes a massive difference.

I also suffered from UTIs but never noticed a change in the smell, so wonder if this is PMR, wonder if anyone else has noticed this as it is not something you talk about. I have not been able to walk up and down stairs for years but thought it was due to my knee relacements, eventually moved to a bungalow. I also feel very tired.

I am involved in a reseach group as a patient advisor and we mentioned in a meeting that many patients complain of UTIs or at least irritable bladders and needing "shares in Tena". The rheumies expressed surprise at the time but one of them has since admitted that she now finds many patients complaining of such problems! I don't know whether it is really UTIs or just irritable bladder or even a combination - GPs are too quick to just hand out antibiotics so  you often don't know but people do seem to find them very resistant - which they would be if they weren't due to bacteria.

The tiredness is part of most autoimmune disease - and that was a major factor in the ?ME in my 20s and also later in my mid-30s I was exhausted after walking upstairs and had hot flushes. My gynae put me on HRT to see what it did and it was like magic. I eventually stopped it after one too many of the media scares - I felt fine so wasn't bothered but it was just a few years later that the PMR started. I wonder now if they were all related. 

never got hot flushes when I went through the change, but do get them now, am sure the urine problems are related to the PRM as now if I cough I have a problem, just so strange as it is not something you talk about but the change in smell all started at the same time as depression not interested in eating and painful joints, just hope this helps other people.

All absolutely typical of PMR! Lots of people blame the pred for the stress incontinence - in some cases it could be as that is one listed side-effect of pred. But I think it is more likely the PMR. 

Ihave to say - I envy the people whose appetite goes with PMR! In the 5 years pre-pred I put on weight because I was less active and in the later stages craved carbs every afternoon - didn't know WHAT I wanted, just that it needed to be sweet which is absolutely not me! Within 24 hours of starting pred that went and with the first sort of pred the weight rearranged itself to around my middle. Then I was put on a different steroid and the weight absolutely piled on, not helped by spending 9 months on crutches. Third sort of pred - most of the weight is gone! Just about 10lbs to go to be where I was pre-PMR 10 years ago. That will be nice - albeit expensive!

Hi, I could really hug you, I have not lost weight as I only want to eat carbs, have not touched meat or veg for a long time and only want sweet things not like me, so now I am absalutely sure I have PML, thank you so much for talking for me today

Sorry about the last time I wrote and saying PML, dont know where that came from, I had written you a long reply but it got lost somewhere, I think because it took so long for anyone to even mention PMR and because I had not heard of anyone only wanting to eat carbs and the depression then I really thought I had someother illness, that is the reason I said I could hug you, suddenly I know that I must really have PMR and just want to get on with the treatment, was also suprised that you said you had been on 3 different types of preds, which one put on the least amount of Weight. Thank you so much for all your help, I live in he New Forest and dont think we have any help groups near me.

Oh - I think there are help groups within striking distance of the New Forest! There is certainly an informal one there - a group of a few ladies who meet for coffee occasionally. I suppose it depends what you call striking distance I suppose - but for once every 2 months is Chertsey too far? People come from South Wales for that one! 

Losing a post is common - if I have done a big one I try to remember to block it and copy it before pressing submit! Saves the heartache!

In the UK you won't get the pred I've lost weight on - it is too expensive although it is approved for use in RA. There is meant to be a trial using it in PMR but it hasn't got off the ground yet.

 is the pred you are talking about methylpred, as you mentioned that you were on that and I looked it up but am sure it said it could take 10 years off your life expectancy so that worried me as am just a young 70!!! and already overweight, would be interested in the trial.

think I got it wrong about taking 10 years off your life , looked up another that I read about and that it what it said, please dont worry as am sure I got it wrong.

No not methyl pred - that was horrible. It is the standard pred used here in the Italian healthcare system, ordianry prednisolone as used in the UK isn't available, and I put on loads of weight and developed a lovely beard! It also didn't work well for me! The one I can have here is called Lodotra and is taken at night. It was hoped a trial would start soon but as far as I know the whole approval process hasn't started yet so it is still some years off for recruiting.

If you follow this link to another post on this site (just click on it):

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

you will find links to the PMRGCAUK northeast support group site and to their associated forum. There you will find loads more ladies in the south of England with PMR and on the parent site there is a list of where there are support groups. If there isn't yet one in your area you can ask on the forum and find out if there are other people who'd like to meet, formally or informally. Setting up a group takes a lot of work and isn't cheap but having coffee together and chatting is easy and cheap enough.

Hi, thank you for that, guess you live in Italy, I have looked up Lodotra and see that you can get it in the Uk but a lot more expensive than other predsif I could be perscribed them privately would you recomend them,please let me know your thoughts. Thank You.

Yes, I live in the north, the German speaking part of Italy, up in the mountains, about an hour and a half from Innsbruck in Austria which is really our nearest big city.

I'm not sure what they cost in the UK, the price here means it would cost up to about 80 euros a month. They come in 1,2 and 5mg tablets for combining to get the right dose while reducing as they can't be cut. They can be had in the UK for morning stiffness in RA but I have no idea whether they are used regularly. I think they are brilliant personally. Since they are coated tablets and they will be absorbed further down the gut you shouldn't need omeprazole - I've never taken it, never been offered it really but they don't use a lot of things here, not until they are needed. As soon as I started taking them I did start to lose weight, quite slowly but it was definitely going from round my midriff. The hope is that it will be found to cause fewer side-effects - it does for me.

Hi Eileen, I'm new to PMR diagnosed within the last few months, since then my urine has become a little darker first thing in the mornings and it has a stronger odour!! If anyone else has a similar problem I'd like to hear from you. 

Andrea, Prednisolone has a very long list of potential side effects but your dark urine may simply be a case of you not drinking sufficient water and showing some signs of dehydration, particularly as you only seem to be experiencing this at the start of the day.  The steroids can also cause a rise in blood sugar, so do take a urine sample to your GP to check that you are not showing signs of diabetes.  Importantly though, do drink plenty of water to flush that urine through.   

Hi Andrea, I was diagnosed 6 months ago, but believe I had it for 2 years, My urine smell changed as did my body odour also went off certain types of food, my doctor thought I was very strange, it was something that really worried me, however have been on Lodotra, a form of pred that I have to pay for, my pain has almost disappeared but the odour and eating did not go away, I am currently on ten dropping to 9  pred, however last month I had a bad tooth absess and was overdosed with amoxacillian antibiotic , it affected my liver, hopefully all better now but strangely enough my body odour has gone and am eating a bit better, dont know why but am seeing rheumy in 2 weeks so hopefully he will have some answers. good luck

Quite a few people have mentioned similar changes, including me - whether it is PMR or pred is difficult to tell. 

Providing your urine goes back to light in colour there isn't too much to worry about. MrsO mentions diabetes - contrary to general belief, if there is sugar in your urine it would mean your blood sugar level was VERY high and the excess was spilling out through the kidneys. A fasting blood test and measuring the Hba1c is a much better indicator and your GP should be doing that every few months anyway.

Thank you for that advice Eileen, I will see how it goes for a few weeks then see the doctor about it!

Thank you Vanessa, yes I think my body odour has changed too, I put that down to being in peri menopause, but it's more than likely it's PMR!!

Thank you MrsO, I think I will get that checked out!