PMR

[rosabud]

Hi I have just been diagnosed with PMR and I am only 44!!. Having been to 3 Doctors and numerous blood tests. I was started off on a 45mg dosage that is now down to 15mg per day. I am suffering from really bad night sweats, always hot and always very thirsty. I am also diabetic which I have been advised will be challenging to control whilst I am taking steroids. I have noticed that since having a decrease in my dosage the pain has worsened and will be advising Doctor next week. I think that I am very lucky and with the current Doctor I am with and my Specialist Nurse as they genuinely care and do not fob me off. I would always challenge a Doctor if I did not feel happy, which I did, never just take the first answer you are given, just because they are Health Professionals does not always make them right!!

[Polywotsit PMRGCAuk team member]

Hello Rosabud

You are a very rare case indeed! I wonder why they started you off on 45mg a day? Can you tell us a little bit more about yourself. When you say 'Doctor' do you mean you are being treated by a consultant rheumatologist? Are you in the UK? And if so, what region/area of the country?

[rosabud in reply to Polywotsit]

Hello Kate

I started off feeling very unwell from about October last year with one Viral Infection after another and hot and cold sweats, thought I was going through the Menopause to be honest. I got to a stage about 2 months ago where I felt totally drained so went to my local GP's and to be honest the first 2 doctors I saw were as much help as a chocolate teapot!! The third Doctor I saw is one of the Senior Doctors of my practice and the one I wanted to see originally, but due to appointment times etc was unable to see him. He checked my 3 previous blood tests and noted that they were raised in certain area's that they should not have been. He did confirm that I did not have rheumatoid arthritis, but had PMR due to the symptoms I was describing. I had previously been prescribed by another Doctor a 3 week dosage of non steroid tablets which made me feel much worse. I had another blood test last week and will be seeing the Doctor again on Thursday to discuss things further, but he is not one of these Doctor's that fobs you off so I will be asking him more questions about this as well as checking my dosage etc. The problem with being on steroids is that it has really altered the readings of my Diabetes making the readings higher than they should be. I am also congested again this week with throat and nose so whether I have another viral infection or not I really do not know. I believe that I was started on a higher than normal dosage due to the fact that this has been going on for some time and with me being Diabetic.

About Me:-

I am 44 years old with a husband and my lovely Staffordshire Bull Terrier Rosa. I do not have any children, but Rosa is my baby (sorry if you find this sad, but she is).

I have 5 older brothers and I am the youngest!!

I live in Kent and I am a Customer Experience Co-ordinator for one of the largest Heating Manufacturers in the World. I really enjoy my job and the interaction with customers and staff.

I love travelling and enjoy reading, jigsaw puzzles, watching Sci-Fi, going to the pictures and enjoy going out for meals.

I have a cheerful outlook on life and do always aim to look at things as opportunities rather than problems. I am a very sociable person and enjoy meeting and talking to new people.

[Pipistrelle]

Agree with Kate -- that's an extraordinarily high dose of prednisone for PMR -- the norm is more like 12-15mg, perhaps 20 mg for some. A lot of the things you are decsiring are common side effects of higher doses of steroids. How fast did they taper you down from 45 to 15?

Also would echo wondering if you are seeing a proper specialist?

There are standard medical guidelines for treating PMR from both the UK and US rheumatology professional organisations -- that's what your doctor should be using.

If you are not seeing a rheumatologist I would request a referral immediately as this treatment approach seems very off any existing recommendations.

If you are getting pain at 15mg I would also wonder whether PMR is the correct diagnosis and if a rheumatologist has considered alternative possibilities like fibromyalgia or rheumatoid arthritis, which might seem more likely given your age and the fast that steroids are not managing the pain. Usually the starting doe is enough to immediately manage the pain and 15mg would be the normal starting dose for most people?

Hence again: if you are not seeing a rheumatologist I think -- given that simply from the age point of view, you would be atypical and thus the diagnosis might need better exploration -- I would want to see a rheumatologist asap.

[Pipistrelle]

decsiring = DESCRIBING :)... typing too fast!

[bluejaygirl]

I am currently on 10 mg of pred and was on as high as 30 for short time. I am 52. Dr thinks I should get a second opinion as to whether it is PMR. I am currently in quite a bit of stiffness and pain.

[Greensleeves in reply to bluejaygirl]

Hi Bluejay I am same age as you. I was great on 15 mg but stiffness and pain coming back on 10mg. Am convinced it's PMR but GP isn't as bloods all fine .. Night sweats are back too. Hope you get some answers. Take care