looking for a second opinion

[5goFlotilla]

Good morning ,

Just over one year in starting at 15mg and now on 5mg , which I guess is a fairly quick taper ?

Have had good attention from GP and 3 visits to my Consultant and 2 phone conversations with him . So can’t grumble about the appointments and access to medics .

However my Consultant has always maintained I don’t have PMR and very keen to get me off Prednisolone , largely because my ESR and CRP were normal . I know the literature contradicts that thought .

Sorry to ramble , I actually like him he is very direct , has tested for all sorts of things and always happy to speak to me . I just feel a second opinion would help me be in a better mindset moving forward . I live in the UK in the East Midlands and happy to travel can anyone recommend a Rheumatologist with a particular interest in PMR.

Thank you .

[DorsetLady PMRGCAuk volunteer]

Hi,

Others will be along shortly to comment, but if you have responded well to Pred, apart from a possible flare/adrenals stuttering you mentioned about a month ago, and Rheumy cannot find any other obviously alternative to PMR, one wonders why he continues to maintain you don't have it. As you said normal CRP/ESR reading really aren't a good enough reason.

Just as a matter of interest, who diagnosed PMR?

[5goFlotilla in reply to DorsetLady]

Dorset Lady thank you , I know it’s so frustrating and he doesn’t really give me an answer . He listens and I ask lots of questions he is very respectful to the fact I am an ex Nursing Sister , retired last year .

My GP diagnosed me initially and I saw the consultant about 3 months later . I think because I have always had full range of movement with no physical disabilities to speak of is partly why he feels this . I do / have muscle aches , bilateral shoulder and hip pains all of which I probably would have ploughed on with if it wasn’t for the crushing fatigue and weight loss 🤷‍♀️

As we know a good whack of steroid will improve most things for a while .

[DorsetLady PMRGCAuk volunteer in reply to 5goFlotilla]

Absolutely correct about the steroids...

GP obviously saw you prior to diagnosis which was why he thought PMR. 3 months down the line, and if under control never going to get quite the same opinion from another doctor maybe... but they need to look at before as well as after, surely... or am I being too simplistic?

[5goFlotilla in reply to DorsetLady]

Thank you Dorset Lady GP did do a multitude of tests and both him and the Consultant were keen to rule out anything else . I perhaps need to be more patient and will defiantly be following your slow taper from now on . He thinks it’s a good idea .

[DorsetLady PMRGCAuk volunteer in reply to 5goFlotilla]

He thinks it’s a good idea .

Result then ..hope it goes well

[yogabonnie]

I think it is fairly common to drop quickly the first year. I suspect with bilateral pain and crushing fatigue you do have PMR. I dropped quickly the first year and have been plowing along for many more...dropping slowly but steadily but I have had flares. I have had a very easy go of PMR being able to keep on doing pretty much everything I was always doing exercise wise.. I think..and bear in mind I am often wrong but never in doubt! ... that you should go DSNS taper from here on out. Then you might not have flare problems and will drop safely. The flares are pretty disappointing. Good luck !!! Sounds good. Hope it continues that way!!

[5goFlotilla in reply to yogabonnie]

Thank you yes following a phone call with my Consultant he is happy for me to taper as slowly as I like now .

The only reason I am looking for second opinion is that he doesn’t think I have PMR …. so what do I have?

He has tested for a multitude of things . I understand these things are not always black and white .

[PMRpro Ambassador]

Are you looking for a private recommendation? It is about the only way to see a specific person. My personal favourite is Rod Hughes in Chertsey who in the past has added patients to his NHS list if they wanted to travel to him.

[5goFlotilla in reply to PMRpro]

Thank you PMRpro yes it’s a private consultation I am looking for ..,.I have all my notes and test results . If someone else agrees with him then so be it .

[piglette]

75% of patients with PMR stay only with primary care. People tend to go to secondary care if they are a bit out of the ordinary. Eg very young, trouble tapering…. I suppose you fall into the bit out of the ordinary category as you do not have raised inflammation markers. However if everything is going well you should not need a cobsultant.