Rhummy

Hi all hope yr all staying safe. Received my letter yesterday off rhummy saying they received my referral off dr but due to covid they have sent further investigation and advice to my own dr, just so I dont have to go to hospital. So was just wondering what does rhummy do different to yr own dr, I'm already on pred. Got app tomorrow to see if I can reduce pred and to arrange blood test to see if they are going down and to chat about oestroparosis sorry that not spelt correct, just thinking what could rhummy have suggested to do

[Koalajane]

Hi, I can’t really answer this as I have not been referred to a rheumatologist. My doctor deals with me at the surgery. I am more or less left to myself as to how I taper but my doctor sees me every year for a review unless I want to see him before

[Hidden in reply to Koalajane]

I've only been on pred since xmas so I'm still new to all this but so far my dr phones me 2-3 wks usually when I'm due to reduce amount but receptionist phones me the wks in between to see if I need to speak to her sooner and can always phone if need to. Is having yearly reviews normal or is that just what suits you?

[Koalajane in reply to Hidden]

At the start and before diagnosis I saw my doctor very regularly and had frequent blood tests. It was after 6 months that she said she thought I could cope now but to get blood tests whenever I felt the need. I now get blood tests every 6 months when I have my diabetes review. I am type 2 in remission. It is a thing at my GP practice that you have an annual review if you have a chronic illness. I am happy to do my own thing but know if I need help I will get it. Every 6 months before my diabetic review I have blood tests which include ESR, hba1c, and full blood count.

[Mary63 in reply to Hidden]

Your doctor’s surgery sounds really wonderful! I think every doctor/practice is different. Mine takes very little notice of me! Little contact. No advice!

Then there are others who are a bit more involved but get hung up on blood test results, telling you the PMR is going away.

I did see a rheumy once but she was arrogant and dismissive so I haven’t been back. I have got most of my advice from this forum.

I think a (good) rheumy can be great if your PMR isn’t straightforward.

I would say if your rheumy is sending advice to your good GP that sounds great.

Meanwhile stick with us and keep asking questions.

[SheffieldJane]

I have had various scans, CT, MRI and Ultrasound over the years plus xRays. I have had the benefit of an excellent Rheumatologist, who is very knowledgeable about PMR/ GCA and Large Vessel Vasculitis ( they are not all like this). These have been the main benefits especially when my PMR morphed into GCA/LVV. Mostly I have used this forum as a resource for the management of my conditions. I think you could access all of the above, via your GP, if your condition changes.

[DorsetLady PMRGCAuk volunteer]

Your GP does sound on the ball, and if your PMR is straightforward and you don’t have other health issues which complicate the matter, and is perfectly capable of treating your illness. In fact, a good GP is better than a bad Rheumy.

She has contacted Rheumy for advice, so leave it at that.

[PMRpro Ambassador]

Depends on the rheumy - so I hope it was a sensible one who likes slow tapers in small steps and emphasises every patient is different! As DL says, a good GP beats a bad rheumy any day ... Did you ask for referral or is it normal in your practice? Often GPs don't bother for a straightforward PMR diagnosis.

[Mary63]

I put higher up that I thought your GP practice was great. And from the point of view of keeping contact with you in early days they have been really good. But I have just looked at your previous posts and realise you were feeling really rubbish at 15 and have still reduced to 12.5mg. Did you ever mention to GP that some people need a higher dose than 15mg?I would...

Or maybe that is why you were referred to a rheumy because you were atypical? Though according to this forum many people need a higher dose than 15mg initially and find the jump of 2.5mg reduction too much.

Good luck...

[Hidden]

Update on above post. Spoke to dr going to try and go to 10mg from tomorrow also going on advise from rhummy been put on evacald3 twice a day to start tomorrow and on waiting list for bone scan for osteoporosis think it was called dexa scan, has any one had one?

[PMRpro Ambassador in reply to Hidden]

I've had 4 - one within weeks starting pred as it should be. The rest at intervals since.