Newly diagnosed PMR

Bones, joints and muscles
1

Hello Fellow Sufferers.

I am a 52 year old female and I have recently been diagnosed with PMR.

I have been reading the comments on here since then, many of which I can empathise with, and some that have made me laugh, which does help !

At the start of this year I felt as though I had flu' on the way. Then I found myself telling colleagues that if I didn't know better, I would have thought someone had thrown me down a flight of stairs. I was even looking in the mirror at the back of my legs for bruises !

I had given up my weekly swim as I was afraid they'd have to hoist me out of the pool if I seized up.

After several weeks of putting up with this, I visited my GP, I thought maybe the statins I were taking had caused the muscle problems. He agreed and said to come back in a month or so to see if there was any improvement.

Well, after only a week or so I was back to see him. The pain and stiffness had got so bad, unable to get out of bed unaided, needed help just to put a pair of socks on etc. etc.

The swelling across my back , neck and shoulders had become very obvious.

I felt as though I was trying to walk with concrete blocks in my arms and legs. When driving, putting on the handbrake became more and more painful, then gave up when changing gear became too much.

After blood tests showed raised ESR, I was put on 20mg prednisolone mid April, the pain decreased and my movement improved the next day. Hurrah !

Then two days later I experienced vertigo and sickness. GP prescrbed something for that though and the following week the prednisolone was reduced to 15mg.

On 11th May I was told my ESR had dropped from 30 to 19 and to stay on 15mg for another week and then go down to 12.5mg. Had another bout of the dizziness, luckily still had the pills for that !

Returned to see my GP a couple of days ago. He was hoping to reduce the steroids again, but was reluctant to do so when he saw how swollen and tender my back, neck and shoulders still are. I am unable to walk very far, half an hour is more than plenty. This is from someone who is used to walking up mountains most weekends. He decided to refer me to a rheumatologist and and has taken more blood. Later the same day he rang me to say that he had spoken to the consultant , who thinks that I wasn't on the 20mgs for long enough before reducing them. So as of now I am back to where I started.

I could go on more about the many things that are affecting me with this, but I won't bore you all anymore, as most of you will have already been there and got the t-shirt !! Going back to see my GP next week, when my sick certificate runs out , if anyones interested I'll let you know the outcome. Many thanks for the opportunity to share our troubles.

DD

2

Sorry to hear how poorly you have felt Have never had any of the swelling you have mentioned Perhaps others have ?? I am on my 2nd bout of PMR and each time started on 20mg for a month then down to 15mg My steroids are only ever reduced monthly with definate bi monthly blood tests and depending how I feel I hvve them monthly if I am not sure if I should rediuce or not I have also never felt sick with steroids but did feel slightly sick after taking the Alendronic acid once a week I now make sure I drinka lot of wa ter with this and dont do too much for an hour or so after I take it I think most of us agree that rest is so important with this illness I get bored resting and having to think Ive done enough when I want to do a lot more !! Very frustrating especially as most of us look the same as we normally do Good Luck and let us all know how you get on

3

Hi, Devonshire Dumpling (what a lovely name - going to Devon tomorrow). Very sorry to hear of yet another fellow sufferer. I've definitely got the T shirt, in fact I've probably worn a couple out, but your comment on the swollen muscles is interesting. I find that only some of mine swell, those on the shoulders and lower back generally, although I have had it in my upper arms. My feet and hands, though, which are currently painful, never seem to get swollen although there are other posts on here where they do, quite badly. Whether swollen or not, I do find all the affected muscles are so very tender to touch, which is yet another problem as I can't sleep or even lie down on anything even vaguely hard. Odd, but then PMR is like that. I've come to the conclusion that it must be customised to each individual and it does seem to hit hardest on very active people. Like you, I was a walker (although not at your heights!) and before PMR my greatest hobby was dancing. Now I've forgotten what a dance floor looks like and as for walking - a geriatric snail could overtake me and that's on a good day. Good luck and keep smiling!

4

Hallo Devonshire Dumpling, Doesn't PMR seem a confusing illness! Especially when doctors don't seem that clued up either! But this site is marvellous for making one realise that we can learn and be encouraged by other's experiences, whilst at the same time finding that we all seem to react differently to PMR and all the medications that go with it! I certainly found steroids made me feel nauseous, and sometimes dizzy, whenI was first on them (20mg), but like alot of the side effects it does wear off. Either our bodies get used to the steroids or it is that we lower the dosage. You do seem to have come down rather quickly - I have taken 3 months to come down from 15mg to 11mg.with occasional going up a mg when I know I have had a particularly challenging day or so, e.g. recently we went away for a week so I stuck on 12mg. rather than continuing to reduce. My doctor now allows me to go at my own speed, alternating days at a lower dosage - or even breaking pills in half. I am getting more confidence too - as Nefret says, knowing when it is worth putting up with more pain because it may help in the long run. But that is all very individual. For me warm weather really helps too. Maybe anything warm - warm water, hot water bottles, heat pads - but then occasionally I get hot flushes, another interesting side effect! I actually look disgustingly healthy as my face has filled out (lines not so visible), look quite pink, etc. until I start to walk which looks painful. Nefret, if you are reading this, have a good holiday in Devon. I found a week away was good because I didn't have to think about how much energy I had to cope with for household and family chores - I could use it for me more.

Enjoy the summer everybody (sorry just seen a wet forecast for the weekend), Green granny

5

Hello again.

Thank you Mrs G, Nefret and Green Granny for your replies.

Re the vertigo, nausea, sickness etc. My GP was of the opinion that it was not due to the steroids, but that this viral infection, (whatever it may be) was attacking the inner ear.

Like you, Green Granny, I suffer what I call my 'blow-torch moments',

usually when it passes over my shoulders and neck.

I've been on the steroids for a couple of months now, and am definitely feeling the effects of weight gain and my chipmunk face.

I noticed on here that some people talk about developing a cough. When this all started for me, I was producing clear phlegm without even coughing.

After a while, a dry cough produced green gunk (sorry). That has cleared up now, but thought I would mention it.

After my visit to my GP the other day, I found that my ESR result has dropped again, now down to 13.

Apparently that is within the normal range ( 0-15 ), yet I am still in a lot of pain and still have significant swelling across the neck and shoulders.

Swelling and tenderness has also developed around my knees, short walks mean that my hands swell and after 20 mins my whole body feels like jelly and I have to get home for a sleep.

I'm waiting for an appointment with the rheumatologist as my GP is not happy with my progress. Been signed off work for another month, I just wish I could get back to 'normal'.

Trying to find that happy medium is proving very difficult. Being unable to sleep at night but 'nod off' very easily in the daytime, I have found very annoying for other family members !

Apparently when I do sleep, my husband says my snoring is horrendous. Possibly due to me putting on weight ?

Has anyone else experienced nails splitting ?

Yes, there do seem to be so many things affecting us all with this.

Like many of you have said, it is good to hear what others are going through, specially when it's all new to you.

Hope you had a good time in Devon, Nefret.

I'll be back to see how everyone else is doing and will keep you posted on my progress, fingers crossed.

Enjoy the sunshine everyone, DD

6

Dear DD..

Very sorry indeed to hear about your PMR troubles. Your Dr only seems to have tested your ESR. How about the CRP test which is C reactive protein which is an important marker in diagnosis. PMR is such an individual disease which effects everyone in different ways but everyone seems to suffer from some of the core symptoms. I was diagnosed last year in May when I only had pain in my hips and back. My GP took blood tests and the ESR and CRP were wonky so she called me back for more extensive blood tests, urine tests and X-rays to exclude myeloma. So I have to say when PMR was diagnosed it was quite a relief. I was started off on 20 mgs per day and reduced very slowly and am now down to 4.5 per day. The shoulders and neck are still painful but I am happy to put up with discomfort and is small beer after the agony before steroids were started. This website really is a godsend to sufferers as PMR really seems to be in the the Cinderella catchment area of knowledge and treatment from the medical profession. I am also very lucky as I am under a rheumatologist at Addenbrookes and they are utterly clued up about PMR.

I do hope things improve for you and I do love your name!!!

Margaret

7

Hi, DD. Sorry to hear you are still having problems. Could be you'll find that you've got cross-over problems with something else, or are just getting steroid side effects big-time. Do tell your doctor that you are having trouble sleeping - at this stage a little help might be of benefit, if you are tired during the day it doesn't help, does it?

As regards the splitting nails, yes, have had horrendous problems with this, my nails also peel badly as well, once or twice down to the quick which was soooo painful. I found almond oil helpful, also the range of Sally Hansen nail products are useful, there are two or three items there which you could try. I now find I have to use the nail cover all the time, but I think I am beginning to see an improvement which is probably due to the steroid reduction.

I did find I was snoring badly for a while, but I do suffer chronic sinus problems - I think I agree that putting on weight does make it worse.

I had a wonderful time in Devon although the weather to start with was interesting - we had snow! Admittedly on one of the highest parts of Dartmoor, but even so we could hardly believe our eyes! Glad to say that after that, we had the usual glorious weather we seem to get there.

My cough has completely gone and I do feel much better for the break. I have also now officially lost a stone in weight since the beginning of the year - whoopee! This is the first weight loss I have had since being diagnosed and I'm finding just now that I am a lot nippier than I was.

Start on yet another round of blood tests tomorrow, but I feel so much better than I did 4-5 months ago, so am hoping that the results will be good and that I will be able to continue reducing.

Good luck to all, enjoy the weather even if we are getting heavy showers tomorrow - it'll save watering the plants.

8

Hi everyone, back with an update on my 'progress'. I use the term very loosely !

Saw a different GP on my last visit, usual one off on his hols.

He decided to do a CRP test ( hurray) along with other blood tests, and talked of scans etc. First time this had been mentioned. Put my dosage of Prednisolone back up, and prescribed Naproxen 500mg ( NSAID ) + Omeprazole Gastro-resistant 20mg, along with the once a week Actonel 35mg. What with the aspirin and statins as well, I should rattle when I move !!

When I returned last week for the results of the tests I was told that everything was normal, except that I am menopausal !!

Large red letters on the doc's results screen saying ABNORMAL.

It made us both laugh !!

GP put the hot flushes down to that, but I never experienced them until the PMR came on.

I told him that the NSAIDS had taken the edge off the pain, but in the last few days it feels as though my body has just got used to them and they are not having the same effect. The worst of the pain seems to move around every few days, not so long ago it was in the rib cage area, now it it is in my arms and the backs of my legs.

Shoulders, neck and back are still tender and swollen, and feeling like there's a knife sticking in between my shoulder blades most of the time.

I've given up wearing any rings because of my fingers swelling up when I do the slightest activity.

I'm seeing the rheumotologist on 11th Aug. , so not long to wait now. Let's hope he can sort me out !!

I'll be back to let you know what he said.

Best wishes to you all, hope that you are not suffering too badly, lets hope there's some sunshine on the way, in more ways than one .

DD

9

Devonshire Dumpling

Two things:

The BSR (British Society of Rheumatology) have just formally adopted guidelines for the treatment of PMR. It would be worth you looking them up either on the BSR site, or on www.pmr-gca-northeast.org.uk

The other is that there is a PMR-GCA UK Support Group located in the Southwest. Details of how to contact them are also on the above site.

Keep on coming to this site - it is so informative and a help to us all.

mrs K

10

Hi Mrs K, thanks for that, will do.

Although from Devon originally, I live in Shropshire, don't think there is anything around here for support !!

I agree that coming to this site is very useful, even if it's just for confirmation that you are not the only one with strange symptoms and experiences.

Thanks again

DD

11

Hello everyone,

just a quick update after my visit to the consultant rheumatologist yesterday.

He has decided that not only do I have Polymyalgia, but also Fibromyalgia. Apparently the treatment for the former is not helping the latter.

At the moment I am on 12.5mg steroids, dropping to 10mg next week. Then I am to drop them by 1mg each month, if all goes well !

I am going to be sent an appointment with the physiotherapy dept. at our local hospital.

Aching all over today, probably due somewhat to being pulled around a lot on the couch yesterday. Didn't get a lot of sleep last night.

Pouring with rain here today, what's happened to that lovely sunshine ?

Good wishes to everyone, hope you are not suffering too much,

DD

12

Hello DD - I was so sorry to hear that your rheumatologist has now diagnosed Fibromyalgia on top of PMR as if that wasn't enough to cope with, especially as although the steroids work for PMR, they can aggravate the Fibromyalgia.

However, it has been mentioned on this site before that some of us believe these two diseases do cross over each other. I understand that with Fibromyalgia, certain parts of the body are painful to touch and I, for one, have certainly gone through periods when I haven't been able to touch any part of my shins down the front of my legs and another area has been the joint on the top of one shoulder. However this discomfort has been very intermittent over the last few years of PMR which leads me to suspect they are symptoms of Fibromyalgia.

I was wondering if by any chance you saw the article on Fibromyalgia in the Mail yesterday about a young mother's experience - it may be very helpful for you. I quote below one very interesting paragraph:-

\"Her doctor also advised her to exercise. The theory is that exercise damages body tissue; as a result, the body releases anti-inflammatory compounds to help correct that damage, reducing pain and assisting healing\"

Apparently she found that 10 minutes into the walk her pain and stiffness levels would drop and the effect could last for up to 24 hours.

It is also mentioned that research has shown that people with chronic muscle and joint pain are low in vitamin D.

There is a lot more in the article but I wont go on in case you have in fact read it yourself but I do hope this may be of help to you. Perhaps if you haven't read it and would be interested in seeing it, then maybe you will be able to e-mail me via e-mail .

I do hope you manage to reduce successfully next week and that tomorrow will be a more comfortable day for you.

As in Wales, we across in the South East have also lost the sunshine but my aunt is coming up from Wales tomorrow for a week and she usually brings good weather, so here's hoping!

MrsO

13

Hello Mrs O,

Many thanks for that info. I haven't read the article in The Mail, but I'm sure I'll find it somewhere on the net.

I did manage to go for a short walk this morning, in the sunshine, and I must say that on the return journey the pain had subsided a little, only to return with a vengeance this afternoon.

The consultant I saw also advised gentle exercise, and losing weight, not easy with the steroids though, as most of you will have experienced.

When I got up this morning, eventually, the puffiness in my face did not seem to be too bad, but that has also increased during the day.

The worst of the pain today is in my fingers and toes.

What a lot of strange symptoms we all suffer from.

Hope todays sunshine is helping everyone to feel brighter, keep smiling, even if it is through gritted teeth !

DD

14

Hi DD - I'm going back to Devon again soon - can't wait!

Yes, like Mrs. O I have been convinced for some time that there is a cross-over somewhere with Fibro; some of the symptoms I've had and still have are more in line with that than with PMR (unless I've found some new ones, and at the moment NOTHING would surprise me).

However, twice before I have mentioned these 'tender/sore' muscle probs to the rheumatologist and although she noted it each time presumably my complaints weren't strong enough for her to feel they needed attention. It doesn't seem to be something that the Pred had any affect on as they are just as bad now as they were seven/eight years ago. On the other hand, they haven't got any worse, so I should count my blessings, I guess!

When I see her next I'm going to stress this particular problem as it may have some bearing on the side effects I get with the biphosphonate drugs (bone protection meds).

One way and another I haven't had a good summer! I now feel fine in myself though and that's just about as much as I could ask for. (Mmmm, no - if someone could just stop the sweat streaming out of my hair just now, I'd be grateful. I'm fed up with sitting in a puddle).

Hope your weather holds up in Wales.

Nefret