Anyone else just being treated by their GP 18 months after diagnosis?

[laithers]

[meggies]

Yes, many people do stay under care of GP right through their 'journey'. People are sometimes referred to a rheumy right at the beginning, either because they don't have typical symptoms or perhaps if GP is not knowleagble about PMR/GCA. Others are referred later if PMR proves difficult to manage. I have a brilliant GP, very well up on PMR, who has managed my PMR very well, even though it's been a bit of a bumpy ride.

Maybe you are asking the question because you are not happy with the way your GP is treating you???? (18 months is not an unusual length of time to still need treatment though).

Hope that helps,

Margaret.

[Sue8]

I am only 2 months in but have a fab doc who knows about PMR. He has said he could refer me but then the gp is at the end of the phone should I flare whereas a rheumy is seen about every 3 months. I was told from the beginning that I would be on pred for at least 2 to 3 yrs if not longer. At the minute I have weekly phone consultations with my doc something you would not do with a rheumy.

[Hidden]

My PMR was diagnosed a year ago by a very good GP who checked me for GCA and warned me what to look out for. Sadly she was only the GP trainee and left after a month for a better job.

After 2 months on 15mg Pred my blood tests finally went back to normal and my then GP decided to reduce me to 10mg. I felt that was too fast and had to argue. So went to 12.5 for a month and then 10. Given the withdrawal symptoms which I suffered I would never have coped with the bigger reduction and so transferred to another GP within the practice. When the PCT transferred me to uncoated pred I had severe stomach ache and he just wanted prescribe more drugs. He said very little and just dished out pills and test results.

I then found an excellent GP within the practice who put me back on coated pred and has been much more proactive - checking weight(OK), advice on diet and exercise, blood pressure check(OK) and testing my vitamin D level(OK). She estimates that the PMR will last for roughly 2 years but says that individual experiences vary. Currently I am slowly reducing the pred with blood tests and check ups with her every 3 months. All being well I expect to remain under her treatment for the duration.

Personally I feel that it is essential to have a good GP whom one has confidence in and who is knowledgeable about the illness. It makes such a difference to have good medical support and has made me more relaxed which in turn must aid recovery.

Hope this helps.

Pat

[laithers]

Thank you all so much for your replies. I am asking this on behalf of my Mum who was diagnosed Jan 2011. She is still in a lot of pain, she started on 20mg of pred but has now come down to 2mg, she is under the Eye Hospital and her consultant is happy with the dosage to keep the GCA at bay but this is a big worry for us. She has asked countless times for a referral to a rheumy but the GP just says no. We feel that seeing a specialist who knows all about PMR would be better as the GP just seems to mess around with her dosage without really understanding the condition. she has to always ask for blood tests too, surely she should be having more regular bloods?

Once again thanks for your replies it's comforting to know there are others out there that totally understand this horrible illness.

[Hidden in reply to laithers]

Hi Laithers

I totally agree with Pats and Sue8. Your Mum needs better help from the medics.

You might find it helpful to read the guidelines on dose reduction from the British Society of Rheumatologists on the North East Support Group website. These can be found at pmr-gca-northeast.org.uk/us...

My GP has been following these although she says that below 5mg she wants the drops to be only 0.5mg which seems in line with the recommendations of others on this website.

As for blood tests, initially I had a lot until after 2 months they were normal, then the next two every 5 weeks before the GP sanctioned the next dose reduction and now every 3 months unless I hit problems.

I hope that your Mum gets the help that she needs and that she is better soon.

Pat

[Hidden]

Hi Laithers,

You say your Mum is still in a lot of pain and only on 2mg. In my opinion, she needs a re-evaluation of her condition and, perhaps, she needs a Rheumatologist. The doses of pred cannot just be messed around with! That's a recipe for disaster. She could have had had a flare which is not under control. I am not an expert, but in my opinion her GP is perhaps not quite understanding how ill your Mum feels.

Pats

[laithers in reply to Hidden]

Hi Pats

You have hit the nail on the head they are just messing around with her, her dosages have gone from 20 then down to 10 then down again they don't seem to have a clue how to control it. She is going again today as she is in agony, swollen ankle, pain in her knee, not eating, feeling very tired and feeling very down, which is so unlike her.

[Sue8 in reply to laithers]

Could you not go with her and insist on her behalf?

[Sue8 in reply to Hidden]

totally agree with Pats

[Hidden]

Hi Laithers,

Only you can see what's going on regarding you mum. She sounds very poorly and pehaps finds it hard to talk for herself. The symptoms you have described sound rather bad. No doubt you will be with her when she visits her GP and things will improve. I do hope so.

Pats