I am new to pmr. Am I expecting too much?

[JUDEAPUDE]

I am a 56 year old woman. I woke up on New Years Eve and found I could not get out of bed. I could not move my arms and could hardly walk, pain in groin and all down front of my legs. I also felt terribly tired and had a head cold type headache. My GP got me an a quick appointment with an Orthopedic Consultant, who luckily for me, thought I had PMR and not a back problem. A blood test ESR 27, confirmed and My GP started me on 15mg Prednisolone. What an amazing difference it made. The pain eased, stiffness disappeared, within days. After 4 weeks my blood tests returned to normal. I still had some discomfort and thought maybe I should be on a higher dose but my GP said I should reduce down to 14mg for 1 week and then 13mg the next week. The pain returned more and I felt generally unwell and very weepy. GP said go back up to 14mg. I am still aching and have a fuzzy flu-like headache. I feel I should be on an even higher dose. I am so worried I may have GCA. Especially, reading about the chance of going blind. I left my job. I was a carer and felt like I needed one myself, let alone care for other people. Am I expecting too much, too quickly.

[trishyb]

Hi Jude I was diagnosed last November after many months of pain and stiffness. I am down to 13mg of Pred at the moment but only reduce by 1mg per month and then only if my ESR rate is normal, if it is high then I stay on the same dose for another month. They say the secret is not to reduce the pred too quickly and it seems to me that maybe that is what your doctor is trying to do. Ask your doctor if you can reduce slowly and in this way you should hopefully get down to a more accceptable level. There are many bad side effects to the steroids so it's not good to stay at these higher levels for too long. Good luck and I hope you get things sorted soon xx

[Hidden]

Hi Jude, unlike you my PMR came on slowly over many years with various diagnoses from arthritis in the neck to RSI, so I just thought I was slowly going downhill after years of hard work and activity. When I was unable to turn over in bed, I didn't really get alarm bells, but a devastatingly painful spasm in my left arm told me something was not quite correct. My GP put me on 4 x 5mg, then 2 x 5mg after a couple of weeks, now I am on 7.5mg but it has been over a 3-month span since the actual diagnosis in February of this year. He does not take blood tests every time I go, and I wonder if he should as my shoulders and neck area are better, I can turn over in bed and raise my arms higher than my shoulders and the crippling pain is almost non-existent, however, my lower back is so so painful now I am more disabled than previously as I cannot walk at all without constant pain which is only relieved by sitting down. I think you are wise to leave your work behind and concentrate on your own health for a while, but from what I have read it is such a broad spectrum and all cases are vastly different. We all probably have a fear of the irreversible blindness of GCA.....I went to have my eyes tested 2 weeks ago, explained to the Optician about the PMR and she gave me such a thorough exam, really thorough, it took forever, and she reported nothing amiss apart from a little cholesteral issue. Now, she said this......"You will know if you have GCA, the symptoms are unmissable.....you will feel extremely unwell, you will have terrible pains in your head......!" So I calmed down a bit and do not jump every time I get a little anxious when my head aches badly.It sounds as if your GP is on the ball with this, and not using a 'suck it and see' method which others appear to do, lucky you being monitored with your ESR levels.....maybe because yours was so sudden. Anyway, good luck and hope, like me, that we soon come to terms with this and as the ladies on FB group of PMA say, gentle hugs x

[JUDEAPUDE in reply to Hidden]

Thank you ALL SO MUCH for your replies. It has made me feel much less anxious and you answered many of my questions that were worrying me. I am so glad I found this website.

Thanks again.

[Polywotsit PMRGCAuk team member]

Hi Jude, Trish and JC

Welcome to this community and thanks for your posts. As you have shown, PMR is a tricky beast that tries to fool doctors by mimicking other illnesses, and everybody has their own story to tell. Up until quite recently, doctors concentrated just on the bilateral pain in the shoulders and 'morning stiffness' (haha - for some people the morning lasts all day). But today, having listened more to what patients are saying, they are also beginning to recognise the other aspects of the illness, like chronic fatigue, that feverish feeling, and sleep disturbance. Lots of us also seem to have this kind of fuzzy head feeling and a chronic headache, as you say, like a flu headache. Once I was diagnosed with PMR I realised that I had had a headache for about 3 months, but hadn't really paid attention to it because my shoulders hurt more! Now, thank goodness, a rheumatologist in Yorkshire is hoping to set up a research project into this 'PMR headache' and these 'sub-GCA' symptoms.

Your optician is right. You are getting a level of protection from full-blown GCA by the dose of steroids that you are taking at the moment. If you did have a GCA flare-up (which does happen occasionally), you would certainly know about it. The headache is excruciating so you want to put your head in a bucket of cold water, and you would also probably have other symptoms as well, such as jaw claudication, which is pain in the jaw on chewing, caused by inadequate blood supply in the arteries to the head. PMR patients need to be alert to the symptoms and dangers of GCA but not to be over-anxious about it. If it should happen you would need to take a double dose of your steroids and get yourself to A and E as soon as possible. Remember that because you have the steroids in your house you have the means to protect yourself. It's the people who go for months without being diagnosed, whose doctors seem to be in denial, who are in real danger.

Anyway, back to you. Everybody has to find the right level of dosage for themselves. Your doctor is following the national guidelines in starting you on 15mg. You may find that you still have some discomfort, but you should be able to carry on with life more normally. Don't hesitate to give the steroids a bit of help by taking paracetemol or co-codamol if you need it. I found it very helpful at the start of the day. Your doctor will try to get you down to about 10mg as soon as possible, but don't rush it if it isn't working. People who try to drop the dosage too fast seem to be the ones most prone to relapse. You will probably find that you will feel good one day and over-do it, so that the next day you feel really rough and need a couple more days to get over it. Don't give yourself a bad time about this - it's normal with PMR. Be kind to yourself. Have a good cry if you feel like it. Accept that you are unwell, but that being relatively young and hopefully fit when you got it, you have every chance of making a good recovery from PMR. I was 54 when I got it. I'm 60 now and I'm glad to say that I'm better, though I do have the odd 'PMR-ish' day.

In our current PMRGCAuk newsletter we have an article about getting PMR in your 50s.

pmrgcauk.com/documents/news...

Take care

Kate

[trishyb]

Kate thank you so much for your helpful info above. I have visited the facebook page and although I don't post there I do find it helpful to read what others have to say. Although the doctor told me it would 'burn itself out' in 3 years, I quickly realised that this isn't the case but still nice to know it gets easier in time with the right advice from docs. I can't wait to get down to 10mg as I hear the 'moonface' lessens somewhat at that stage lol. All the best to everyone x

[Judi]

Hi Jude,

I had PMR in both shoulders back at the start of 2008. (Notice I said 'had' !). It may raise it's weary head again, who knows but for the time being I keep my fingers crossed that it doesn't.

With regard reducing the steroids, as I also have rheumatoid arthritis I was seen by my rheumy consultant and rheumy nurse for the PMR. When I told them that I was having difficulty reducing my steroids, the nurse told me that a lot of people find it better to alternate the days when reducing the amount. I did this for the first week and I wrote on the packet at the beginning of the week which days I was going to reduce the amount (i.e. Monday 4, Tuesday 3, Wednesday 4, Thursday 3 and etc.) then the next week I reduced by 1 more tablet on 1 day (i.e. Monday 3, Tuesday 3, Wednesday 4, Thursday 3 and etc.) it did take longer but I did get there eventually. (Incidentally, as I was reducing the steroids so my weight reduced !) I crossed off each day so I knew exactly where I was at.

The most difficult one to reduced was when I was down to 1 steroid a day - here I jumped around a bit and ended up taking 1 each day for a longer period. If I felt the stiffness/pain was coming through on a 'no steroid day' I took one.

Sorry if this sounds confusing - it's a bit difficult to explain.

Judi

[JUDEAPUDE in reply to Judi]

Thank you very much for taking the time to write to me. Yes I did understand you and I think a lot of people have found it easier to cut down this way. I realize it is going to take me a while and I must be patient and remember what pain I was in when first struck down with PMR. I do hope that your PMR is gone forever. Thanks again.

[angeholder]

hi Jude, i have pmr and gca, it was the gca that made me go to the doctor the head pain was indescribable, except that i couldnt even put my head on a pillow because it hurt, it wasnt like a headache my skull actually screamed in pain i slept sitting up for 4 days before i got to the doc, within 2 days the steroid dose they put me on stopped it all, you will know without a doubt if you get gca, my biggest fear was going blind but they keep such a very close eye (no pun intended) on everything that there is virtually no chance of that happening.

[JUDEAPUDE]

Thank you Ange for your reply.

My headaches are not at all like yours. You have really put my mind at rest.

I hope you ate getting on well.