Trish29 here. I am due to see a new rheumy next week after having a dreadful flare up in January.

[trish29]

I know I want to ask so many questions ,but I know there won't be time, I have had PMR for nearly 8yrs and I don't,t know what the ESR levels should be when the inflammation has settled to a certain degree, I am between 13.05mg and15.00mg depending on pain level of prednisolone and trying to come down further . In all the time l have had PMR I felt very alone, l now have a different GP who has referred me to the new rheumy . I am taking other medication for high blood pressure. Propranalol 80mg twice a day +ramipril 10mg. Which I,ve read isn't a good medication. I feel that I am starting all over again. - any advice please !! Trish29

[Celtic PMRGCAuk volunteer]

Hello Trish29

What a disappointment for you to have a recent flare after so many years with PMR. I'm so glad to hear that your new GP is arranging for you to see another rheumy and I hope under his/her guidance you will soon get back on track towards eventual remission.

It's difficult to say what your" ESR levels should be when the inflammation has settled to a certain degree" as everyone responds differently both in their reaction to the illness itself and to the steroid treatment. Once on treatment some people will find that their bloods return to normal almost immediately, whereas others will experience a gradual improvement.

My rheumy arranged for ESR and CRP blood tests to be carried out prior to each reduction - if there wasn't an improvement then he would hold me at my present dose and re-test a few weeks later.

I notice that you live in the Surrey area so if you can get to one of our meetings in Chertsey and get together with other sufferers of PMR and GCA, I'm sure that will help you to feel less "alone".

I share your concern about BP meds as I'm just about to embark on treatment for high blood pressure - having had treatment some years ago, I'm not looking forward to starting it again.

You said you want to ask so many questions - well just ask away and there will always be someone along to try and answer from their experience.

Lots of good luck wishes with your new rheumy.

[trish29 in reply to Celtic]

Hi Celtic blogger, thank you for your reply, your rheumy sounds very good and let's hope I'm as lucky next week! Good luck when you go back on b pressure tablets and I hope they will suit you, my blood pressure problem has been for a while now, it,s just the ramipril that upsets me and I,m hoping I might be able to get them lowered to 5mg a day?. I am a member of PMR/GCA at Chertsey and the meetings are very reassuring. And everyone's so friendly and helpful. I come away from the meetings surprised at other PMR sufferers stories . best wishes trish29

[bowler]

I do hope your new Rheumy will be able to sort you out.

I assume you will be having a blood test done before you go, this does save time, otherwise it's another wait in the blood clinic for the results. What is your ESR now ??

The "normal" ESR is around 3 to 15 or 20 !!!! However as we have heard from many, many people on this site, including me, what is a "normal" ESR when having a flare ??

I too take blood pressure medication, { not the same ones as you are taking } and I have tried several, due to the side effects they are having on my kidney's, and my GP is still trying to get them sorted to suit me..

Do you have any side effects from the Propranalol and Ramipril or did you just mention them.?

I think... this time next week after seeing and speaking to a new Rheumy you will feel better, and hopefully get sorted.

good luck

[trish29 in reply to bowler]

Hello bowler, thank you for your reply. No blood tests have been arranged and I haven't had the ESR checked either. I think my GP wants my new rheumy to start from scratch. Propranolol 80 mg suits me OK , it,s the ramapril that gives me a dry mouth and thickly throat , I feel that 10mg is to high a dose (hoping to come down to 5mg). I just want to get sorted out by someone who understands as the last rheumy was abrupt as doesn't, have time for PMR . You would think that after having PMR for so long that I would no most of the answers! It,s very reassuring to know that there is more research golng on in the hospitals etc. Best wishes trish29

[tourdefrance in reply to bowler]

morning bowler,

with regard to 'normal' levels of ESR, my understanding is that as long as my blood tests come back below 10 that is 'normal'. If I couple that with my general well-being at the time then I agree with the GP whether to stay on the dosage or reduce by 1mg. Interestingly if I am not feeling good on blood test day that is normally coupled with a high blood value.....my 'flare'.

Isn't is amazing how much contradictory information is out there??

[Celtic PMRGCAuk volunteer]

Hello again trish29 and Surrey member! I didn't recognise you under your alias - I do now! Great to see you posting here and it's such good news that you're about to see a new rheumy. Lots of good luck wishes - look forward to hearing all about it and see you on the 30th? Guess who?!!

[trish29 in reply to Celtic]

Good morning Celtic blogger Thank you for your good wishes! See you on the 30th and I'm so pleased I'm able to get on the blog now!. It opens your eyes to what other sufferers are golng through . Not sure who you are but have an idea ,but no good with names yet . take care trish29.

[floramay]

trish29 you are never alone we are all here for you take care x

[trish29 in reply to floramay]

Thank you floramay, l have felt better since I have been on the blog and since I joined PMR/gcauk. Even with my partners support and my families it,s the dark moments when the pain takes over that you feel low. I have come a long way since January when I couldn't get out of bed , All I have heard in all these years with PMR is it does go away ! It does fizzle ! I,m still hoping ! Best wishes trish29

[Patsy235]

I have just been diagnosed with PMR after asking for a rhumy for two years (have spinal problem and tumour in spinal column) sot dr's said pain in my shoulders etc was due to this, they did not take any notice of me until it was to late and now both my shoulders are very painful. Why/ because my ESR levels were normal for all of the two years that I know I have had these extra symptoms. The last rhumy was one that was just going to inject my shoulders and he told me I had PMR just by looking at me, and that in 50% of all cases there is just borderline ESR increase. Stay true to yourself - you know your own body best. Take Care.

[trish29 in reply to Patsy235]

Hello patsy235. Thank you for your comments( very interesting). My last rheumy did not have time for me at all - she had no time at all for PMR , she did inject my shoulders for the stiffness ,but I had a lot of pain for days after having the injections! How lucky your rheumy could recognise your PMR by looking at you, most drs don't want to know. If the new rheumy isn't interested then I have to keep trying to taper down on the steroids myself! As you say we are all different and know are own bodies and every day is different. All best wishes trish29 (I,m another pat)

[Hidden in reply to Patsy235]

Hi Patsy,

Your tragic reply has really hit home with me.

I have never showed any substancial increase in my bloods regarding inflammation - my GP took me almost off prednisolone because of these negative results and I reduced from 30mg to 3mg in 8 weeks before I saw my rheumy but - conclusion by specialist - you're classic PMR and I'm certain you will have a flare. He was right. Some weeks later, back up to top dose of 30mg for the 2nd time.

This can be a dangerous illness - apart from all the pain and disability it causes. When I go for my appointments to see my rheumy, I carry such 'anger' with me I have to bite my tongue when talking to ------. Not just on my behalf, but from the 'horror stories' I sometimes hear from folks on site who have suffered so much.

Thank heavens that there are GPs and specialists who have learned to think 'outside the box'.

Pats.

[Whittlesey in reply to Hidden]

Agree with you, on this Pats. The doctors do seem to be slowly understanding that this is not just an "old people's disease" and just kind of pat us on the head, until we go into a nursing home. I am really thankful that here, in the states, I have found some good doctors who understand that I am 62, have had a pretty active and determined life, and the idea of an "old people's disease" -- "just take the prednisone and call me in the morning" idea, doesn't work for me and many. (never mind the loss of adrenal function, Cushing Syndrome, etc. you can get without adequate care). They do try to work with this "new" idea,-- that we won't just take the pill, think the doctor is a miracle worker and leave. For a beginning, this is what we seek.

[Celtic PMRGCAuk volunteer]

Hello Patsy235

I went through a similar experience to you for a year with undiagnosed PMR, spending months of that year in bed and at first wondering whether all the pain was connected to the slipped vertebra in my spine (spondylolisthesis). The untreated inflammation spread to the blood vessels in my head when both GCA and PMR were finally diagnosed. I was a whisker away from spinal surgery when the gem of an orthopaedic consultant decided, following an MRI, that perhaps the pain was being caused by something other than my spinal problem and cancelled the op.

It can be confusing for the medics in reaching a diagnosis of PMR at the best of times but even more so where spinal problems are involved. And, of course, in your case and a few other PMR sufferers, the absence of raised ESR and CRP blood test markers doesn't help.

I also found it confusing at times following diagnosis which pains were attributable to my spine and which to PMR, but I did eventually learn to tell the difference. As you say "you know your own body best".

Thank goodness you eventually found a rheumy who recognised your illness and I do hope that you will soon feel much better.

[Patsy235]

Hi Pats and Celtic - first Pat, yes, that is what is wrong with me now - I am so glad they have diiagnosed PMR but so angry that my body has been battered by months of pain, pain and more pain 24/7. Celtic - I always knew that when my tumour starts it goes right round my body like a belt. My neck pain is just in my neck and the fibromyalgia and polymyalgia go almost everywhere! Not confusing for Medical people, shoulders and top of arm, skull and side of temple, hips and bottom of back - PMR. They just have to use a bbit of noodle! Fight and hit these professionals right between the eyes - they could not stand our pain for two minutes - so why should we! Stay true to yourselves.

[Whittlesey in reply to Patsy235]

Agreed.

[Patsy235]

Trish29 - thinking of you too. Busy world so consultants have busy caseloads - tough they also have huge wage packets - remember - you don't have to have raised ESR levels.

[trish29 in reply to Patsy235]

Hello patsy 235. Trish29 answering you about rheumy consultants and doctors ! Ive been building up to go to see my new rheumy tomorrow with lots of questions to ask and was hoping to get new blood tests and vit d test etc and help to reduce the steroids yet again and would you believe I actually had 2 phone calls from the hospital cancelling my appointment. On top of that I can't get in with my main gp..until the 25th April , so back to the drawing board. I hope you are feeling better

And all best wishes Trish 29

[Hidden]

Hi Trish,

You have been through an awful time during these last years. You don't need any of us to tell you that I'm sure. I wonder why the pred is not giving you the pain relief it should be. We take this devious drug to rid us of the symptoms of PMR and if the dose you are on is not doing that, then it is simply not high enough. Can you think of the dose that kept you pain - free? If so, then go back to it and stay there until you see your GP.

Your BP must be quite high to warrent you having to take these two drugs to control it, but try not to worry - once pain free, then with slow reductions in small amounts you will get there I'm sure.

Pats.

[trish29 in reply to Hidden]

Hi pats. Thank you for your advice , I'd already decided to try 15mg of prednisolone for the next few days to see if it controls the pain and work from there ,but the weight goes on straight away. If my pain doesn't ease off I will try phoning the gp . I can,t believe that after all this time I'm still fighting PMR. Hope you are OK today. Pat. Trish 29

[Hidden in reply to trish29]

Hi trish29,

Yes, I can really sympathise with you on the weight issue - it's so easy to put it on, especially when on the teen doses.

I keep my weight in check by really watching my diet. No added salt or sugar, always eating refined carbs (and that means not even peeling potatoes if I eat them), wholemeal bread, taking all the fat off meat, eating lots of fish and having as many vegetables as I can bear to eat. I avoid the 'nightshade family like tomatoes and peppers as they promote inflammation. I have even cut right down on fruit to avoid sugar. I use many anti inflammitory herbs in my cooking. Curries are good as the powder has many of these herbs in it. I don't drink coffee - too high in caffeine, but I do have tea. I drink lots of water which helps to flush excess salt and sugar from the body. Dark chocolate is good, and I do enjoy a glass or two of red wine - it makes me feel better and the red colouring is a very good anti inflammitory.

This diet has become a way of life for me, but I must say that even on this strict diet, I still put on weight. At the mo on 7.5mg of pred and still weighing about 7 pounds over normal, but on the higher doses I was about 10 pounds over.

Hope this helps! I know how hard it is not to have many treats when we're ill, but when you can't get into your clothes, it's such a downer.

Pats.

[trish29 in reply to Hidden]

Hi pats thank you for your nice blog , I,m feeling better than I did first thing this morning , I've been treated out to lunch with my partner and a grand.daughter I didn't have a pudding though! I took 15mg steroid this morning and I'm going to stay on that for a few days . I feel ive gone back to when I began over7years ago. I've always been careful with my diet. I eat lots of fish but I can't take oil and spices . shame I can't eat chocolate and drink red wine due to the fact that I get migraines but the blood pressure tablets help to keep them at bay . I drink plenty of water but I love my cup of tea! I don't have added salt and watch my sugar intake. I don't want to go any higher on the steroids , I will just keep monitoring the situation. Thanks. Trish29

[Patsy235]

Hi Trish29, as you know I cannot take steroids but those people that I know take them for PMR do not get any relief until the doze is 20 or above. Like all tablets there is side effects - so be careful. It seems to me like we are banging our heads against the wall - PMR is dangerous for the damage it does to the body - YET - the health professionals do not seem to acknowledge this hideous disease for how potent it is. Thinking about you and remember - it is your body, your pain and do not let them belittle you when you seek help.

[trish29 in reply to Patsy235]

Hi patsy235. Thank you for your comment , I really don't want to go up to 20mg of steroid and over but feeling better today on 15mg so I will keep this up for a few days and then try and speak to my gp . I just feel that there must be more rheumy consultants out there for when one goes off sick and not to leave the patient out in limbo . over the years I've always followed the consultants advice and I've got down to 0.05mg quite a few times but for some reason a flare up or an infection turns up. Trish29

[Patsy235]

Trish29 - a flare up will occur - PMR is an autoimmune disease and cannot be cured. With the right medication is can be controlled but when you are going down to 0.05mg of steroids this is not allowing any relief for the PMR , plus every little cold or the likes that your body contacts is highlighted with PMR as an autoimmune by its very admission is our bodies fighting against itself. My Father had PMR whilst also having Alzheimers - as I was his main carer I attended every appointment and follwoed this illness closely and now I have it so I am well equipped with knowledge but not the consultants to boot - I have all locum rheumatologists must be a shortage.Good luck