PMR info needed

[Mbln]

Hoping to connect with others who share my pain

[Brixhamhampster]

Hello mbn

[Brixhamhampster]

Hello Mbn. Just thought I would give you a quick reply to let you know people are listening. I would suggest that you post another message with a few more details about your condition so that the experts on this forum can help you. There are so many people so willing to help and in a couple of hours you will get some responses but they will want to know the best way to share your worries.

[Mbln in reply to Brixhamhampster]

Thank you for your information! I was diagnosed with PMR 11 years ago . I was diagnosed by a reputable rheumatologist and my GP continued my treatment. After a painful battle on and off steroids for 4 years I was able to live steroid free without major recurrence for almost 7 years ! Two weeks ago it started again pain stiffness cannot properly function dressing myself cannot raise my arms and bone crackling.

Within the past 7 years I have moved to a new state and have been seeing a new GP my old GP has never forwarded my records after 3 requests. When I went to current GP yesterday the blood work came back normal she will not start me on prednisone bc of this ! She has never seen my active PMR before this she has decided to wait it out only prescribing low Mg of pain meds and anxiety treatment . I am entering 3rd week of pain should I request a referral to a rheumatologist? Is it normal for blood levels to be normal while still having a recurrence? Any information you can provide would be most appreciated as I am suffering!!

[PMRpro Ambassador in reply to Mbln]

Either you need a new GP or you need a rheumy. Up to 20% of patients have normal blood markers.

However, there are other things that can cause the symptoms and she needs to investigate that - not hand out medications for anxiety. Personally I would take exception to being told I was anxious and the doctor ignore the real problem of pain. Particularly since pain meds do not a lot for PMR except cause problems, depending on what they are.

But is there any possibility of contacting someone who can go to your former GP to push them sending your records? Not that it should matter - my GP has no historic notes. She just gets on with what she sees and takes my word for it.

[annie_marie]

Hello mbin, . Just to say, I am really sorry to hear how much pain you are in and how low you are feeling . As brixhampster says, You are are not alone, there are a lot of lovely helpful people on this forum who I am sure will be along soon when europe wakes up with support and advice. I guess the fact that it is 5.30am in the UK that you are living in the USA? .

[Celtic PMRGCAuk volunteer]

Hello Mbln and welcome but I'm so sorry that you are feeling so poorly. I am in touch with a few people who have had a return of PMR after a few years, and it seems that their second bouts were quite different to their first. Even blood results can be different during return bouts, or even lag behind the arrival of symptoms.....or not rise at all. It's a pity that doctor didn't listen to you and your previous experience - not much point in prescribing pain meds if it is PMR as they are unlikely to have an effect. Just a short trial of steroids may have provided an answer. If it was me, I would either go back and stand my ground or seek an appointment with a rheumatologist privately if that is an option. Good luck and do let us know how you get on - there is always someone around on here with a listening ear and some comforting support and advice from their own experience.

[SheffieldJane]

Welcome Mbln,

The way you are being treated is simply not good enough. Blood test results often do not reflect this condition accurately - more's the pity.

You are an intelligent patient, you recognise the reoccurrence of PMR, only Steroids will bring you relief. Seriously change your doctor unless you can make her see reason. It is harmful to let the inflammation go unchecked. The GP is achieving nothing by letting you suffer. Good luck, keep us posted.

[TooSore]

I'm in New England. If you're in the area, send me a message. I have a rheumatologist that seems to listen

[Mbln]

Thank you all for your most helpful comments ! I will speak to my GP again on Monday if no response I will seek a new rheumatologist! I am a very informed patient I did take exception to being prescribed pain killer natcotics and anxiety meds as those are not helpful and addictive when prednisone is not ! Yes there are side affects to it but like I said I have not been in prednisone in almost 7 years ! You all are correct recurrences are different as this time I am also experiencing itching in the joints as well as severe pain I never experienced the itching before

I will seek as many avenues as I can to be heard !

I will keep you all posted in the future THANK YOU AGAIN !! It is very theaputic to have others who actually know what the hardships of this disease may cause

So sorry you all experience what I do as well

Take care