Suspected PMR | Arthritis Information

Hi,

HI, I am new to the site, 43 years old and feeling a little scared. I first felt unwell about six weeks ago after a stomach bug my muscles started aching. My GP did an ESR test which was high, I had this repeated a couple of weeks ago as the aches and pains in my muscles were getting worse and this had gone up. He has referred me to a Rheumatologist who I see in two weeks with suspected PMR. The way I am feeling it can't come soon enough. My upper right arm is the worse, and I have difficulty steering my car but also have dull aches and weakness in Neck, arms and legs feel completely useless at the moment, I have no energy am tired and feeling down. I have a couple of days holiday from work but am due back tomorrow I haven't had any time off sick yet but am wondering how long I can keep going to work feeling this way I am very worried as my wages are essential. I have a partner and three children ( 17 and over) and try not to worry them with the way I feel.Sorry to moan as I am sure there are people feeling much worse than me out there, but I am getting really worried, is there anyone who has been diagnosed with PMR and tell me if there is any light at the end of the tunnel.

Yours hopefully
Karen

Hi Karen,

I understand your feelings and pain---been there. Before I was diagnosed, and able to see a rheum(took 4 mos) I found advil or aspirin helped to reduce the pain, and as the day wore on, the symptons subsided.

Mine started in my legs, then moved to my neck and arms. I initially thought my neck and arms hurt so much because I used them more because of lack of use in my legs(due to pain) And driving was difficult, my shoulders hurt just hanging onto to the steering wheel.

Hang in there, I know, 2 weeks seems like forever. If you can tolerate advil, give it a try. And keep me posted.

Janet

Hi, Karen!

All of us who have PMR can certainly empathize with
you. It is scary not knowing what's wrong, but it
sounds like you have a good GP who suspected PMR and is
checking about it right away. 2 weeks is not long to
get to see a rheumatologist; from my experience here,
the wait is usually 4 months or more for a new patient.
My GP didn't ever do a blood test for sed rate, so I
went about 2 years before being diagnosed. I have back
problems, too, so we were thinking that was the issue.
Not fun to have something else added to already
existing pain. If you do have PMR, they will likely put
you on prednisone. I know the side effects can be bad
(not always, though), but the relief it gives is almost
miraculous!! Some people can get by on things like
Advil. Unfortunately, those don't work for me. Will
keep you in my prayers. Hang in there. It may not seem
like itnow, but the 2 weeks will go by quickly, and
then you'll have your answers!! Take care.
Reni

Hi Karen and Reni,

I failed to mention that I am now on prednisone. I used Advil prior to my knowledge/diagnosis of PMR. I have tremendous relief from the prednisone and very few side effects. I am now on 12.5 mg per day, down from 15 mg which I was on for 6 weeks. After a total of 6 weeks @12.5, I will taper to 10 mg. Hopefully, if blood work shows improvement in the inflammation, the taper will continue.

I agree with Reni,you are fortunate to get to see a Rheum Dr. this soon. And you are ahead of the game having some knowledge of this PMR. Most people look at me like I have 3 heads when they find out about PMR....I think that they think I am making it up...anyone else have that reaction?

Take care and you will have relief very soon,

Janet

Hi Kaz

I a replying as I am from the UK too. There doesn't seem to be any forums like this one here, not that I have managed to find anyway. I have been looking at this forum for over a year and have only just posted my experiences as I thought it might be of interested to others who suffer from this condition. You have been unlucky in that you are very young to have this condition (I am 62 and was diagnosed when I was 60). My ESR rate was 102 when the PMR was diagnosed and over a year I gradually went from 30 mg of Prednisolone to 0. Unfortunately, the symptoms came back and my doctor put me back up to 30 but only for a very short time, I was back down to 5 mg within a short time. I then went down to 3 1/2 mg but I found that this was too low, I am currently on 6 mg and am going to go down to 5 mg in a couple of days. I think that 5mg is probably the right dosage for me at the present time. I was very anti steroids but I have decided that quality of life is more important so hang in there. It does get better

Elizabeth