GP advice please

[olive2709]

As some of you may know my GP is excellent she has looked after me for 18month's can't fault her .went into flair late last year put me on 10mg no fuss worked very well in fact between pred and thyroxin felt like taylor made meds . Came down to 7·5mg 20days ago not going well seeing her tomorrow wonder if it's time she moved me on to consultant any advice on how to raise subject

[DorsetLady PMRGCAuk volunteer]

Hi Olive,

If you think your GP is doing well, why do you want/need to see Consultant? My GPs and I have managed my GCA for 4 years with any expert intervention.

I would think your drop from 10 to 7.5mg has caused the problem - too big! You know the 10% rule😏 by now, in fact I'm sure you've written it!

If you want to see a consultant, just ask to be referred. It's your prerogative. Your GP may not think it's necessary, but you can but try!

Did you get down to zero before, and then it flared up again? Maybe you could use that as a reason to see consultant.

[Runrig01]

I agree with Dorsetlady, I think your drop to 7.5mgs is responsible for how you are feeling.

If you are wanting to consider adding a DMARD such as Mrthotrexate or Azathioprine to your meds, then a referral to a Rheumatilogist would be required. That is what most Rheumys are likely to suggest when you visit them. If your happy to continue with just Pred then I would be inclined to stay with go and reduce in smaller steps. It depends on your reasoning for considering referral.

[PMRpro Ambassador]

The others are right - you've simply tried to go too low and probably in too big a step if we understand you correctly.

A rheumy won't do anything any different from what your obviously very good GP is already doing. If you have had PMR for 18 months and already got to below 10mg and had a flare in the middle you can't complain. But from 10mg you need to go in much smaller steps than 2.5mg - that's how you avoid flares! Reducing too fast or too far is the main reason for having a flare - having a flare because the activity of the disease has increased does happen but nowhere near so often.

And how would you feel if the rheumy you ended up seeing decided you had to come off pred altogether so they can see your symptoms? You run the risk of never seeing the same doctor twice - I hadn't got a diagnosis and went back to see, I thought, the rheumy and walked in to meet a glorified GP (one with a "special interest", I had one of those in the practice)! The rheumy also said it wasn't PMR despite me being 70% better just 6 hours after taking 15mg pred, never mind 6 days later, and wanted to put me on an old and fairly unpleasant RA drug.

[olive2709]

Hi all saw GP not seen her for 11weeks , so we had not talked about what has been going on with hospital she suggested I go and see rummy . She has had letter from hospital,so knows the ENT Consultant I have been seeing for last 4 or so years has passed me to a colleague things not good in neck scar tissue changing plus another area looking as if a node is growing .

After 35 years could have a revisit from Mr c don't want to say or write word . Back and forward for next few weeks then all results going to multi discipline team early April to try work out best path Iam just going to turn up at x-Ray and go into the room the say go on autopilot my way of coping

[DorsetLady PMRGCAuk volunteer in reply to olive2709]

Hi again Olive,

Just revised this post. With all you have going on at the moment you cannot be thinking about reducing Pred. If you're feeling ok on 10mg, or higher if necessary, then stay at that dose until you get the other things sorted. Good luck, and hope it's not what you think it might be.