Tempted fate

[Hollyseden]

Recently I've spoken about how my doctor told me to just stay on my current dose of 3mg during these Covid times. Happy to do that because under that causes problems. Anyway... this week I phoned in for my prescription again and was called back by a doctor I've never spoken to before. She was concerned about how long I've been on pred and dexascan results ☹️ She is now contacting rheumatologist to arrange a phone appointment with him. Don't expect that to be very soon but meanwhile I've started taper to 2½ again. Just wish doctors in same practice would consult with each other. Pfft End of my moan for today

[DorsetLady PMRGCAuk volunteer]

Communication is a wonderful thing isn't it?🤦‍♀️..thought they all had access to same info in these computerised times...that's always assuming they bother to check😲

[MrsNails]

Hi

Don’t reduce just because some GP who doesn’t know you had a passing opinion, if 3mg keeps you well wait until you’ve spoken to the Rheumatologist....

Angela x

What does your Dexa Scan show?

[Hollyseden in reply to MrsNails]

Obviously I do want to reduce, don't we all? Just a bit annoyed about a strange doctor's phone call. For last couple of weeks I've been doing a really slow taper 2½ every 5 days. ☺️ Almost dead slow and stop. Might even try every 4 days soon.

Dexascan wasnt too good, second one showed I was borderline osteoporosis levels. Somewhere along the way I'm sure I read that levels are compared to a healthy 30 year old. Unfair surely, unless I dreamt it?

[PMRpro Ambassador in reply to Hollyseden]

What are your t-scores?

[PMRpro Ambassador]

Must be bored - and the lord only knows how she thinks a rheumatologist has time to speak to someone on 3mg! If she is that worried - why isn't she speaking to an endocrinologist?

PS - have you got a dexa result?

[Hollyseden in reply to PMRpro]

I've only seen the rheumatologist once, when I was referred for possible GCA. He arranged biopsy really quickly, result negative so he didn't need to see me again. Said treatment for PMR could be dealt with by my GP, wonder what he will make of this referral.

Yes dexascan wasnt great, borderline for osteoporosis.

[PMRpro Ambassador in reply to Hollyseden]

Except a negative biopsy does NOT mean you don't have GCA - it means it wasn't affecting the bit/bits they looked at. Either because it hasn't reached the temporal artery or because of something called skip lesions where the giant cells aren't evenly present throughout the tissue. Positive is 100% certain positive - negative just means they didn't see what they were looking for,.

[Hollyseden in reply to PMRpro]

Yes I was aware of that from what I've read here but hopefully that was the right diagnosis. It was a couple of years ago 🤞

[SheffieldJane]

Can you talk to your Rheumatologist, who is actually in charge of your case and make the argument for staying as you are? My GP’s practice have backed off to a fault - even the simplest question.

[Hollyseden in reply to SheffieldJane]

As I said above to pmpro, rheumatologist handed me back over to doctors care when temporal biopsy was negative. Been fine with my usual doctor 🤷

[SheffieldJane in reply to Hollyseden]

I bet it was a prescription review. My practice has an in house pharmacist who does them. He is hell bent on finding something to cancel or alter ( he must be on commission). I twittered on to him quite openly about concerns with certain long term drugs. The next time I got my prescription all sorts of things had been removed from my repeat dispensing which meant a doctor’s appointment each time I required the item. It caused me no end of bother particularly with Pred in differing strengths. I had to get everything put back on to repeat dispensing. A complete waste of time to look like monitoring. He didn’t last long I noticed. I would be inclined to stay as I was (3mgs) and keep schtum. If I had the supplies, which I do.

[Hollyseden in reply to SheffieldJane]

Pred isn't on my repeat prescription. I have to phone the surgery when I need more. Receptionist asks what dose, what strength etc and sends request to doctor to fill the prescription. At first I saw doctor regularly for checkups, blood tests etc then she said I should just continue with my own taper and make appointment to see her if I had any problems. I know how lucky I am not to have had to see doctor, especially in last few months. What a shame about the hassle you have had 🙁

[SheffieldJane in reply to Hollyseden]

Oh I see, so that’s why he felt compelled to question your teeny tiny dose. I might have said, I have discussed this with my usual doctor and we agreed etc.........

Please don’t suffer unnecessarily. The last thing you want is a flare at this stage. I do envy you. You know I’m back to the drawing board after getting to 3 mgs. 🥺

[Hollyseden in reply to SheffieldJane]

Yes I know. I've read about your struggle 🙁 I hope one day you will be back to 3mg too.

I did say to that doctor on the phone that I had struggled when I tried to lower my dose and the last thing I want is a flare to knock me for six and I would end up back to the beginning needing even more pred. Meanwhile I'm taking 2½ every few days. Slowly slowly for me. It would be ridiculous to waste a rheumys time on me at the moment. Many people out there needing his time and help more than I do at the moment xx

[SheffieldJane in reply to Hollyseden]

Good luck!

[Hollyseden in reply to SheffieldJane]

Aww thank you 😚

[yogabonnie]

stay where you are. At least until after Covid!! do as much exercise as you can. if only heel drops everyday!!

good that you are at 3!! sounds like a lovely place to be. just enough..not too much. I also dont think 3 will do much more bone damage...

[Hollyseden in reply to yogabonnie]

Thank you, yes 3 is a good place to be, been stuck here a while but I'm doing a really slow taper to 2½, dead slow n nearly stop 😋 I'll have to Google heel drops but I do lift weights in the form of my grandson who is now 2½ who I look after 3 days a week. When he was a newborn I could hardly hold him because I was so sore. Progress indeed

[PMRpro Ambassador]

Oh - and forgot to say that the UK top cheese in GCA told us a few months ago that he keeps patients on 2-3mg indefinitely as it reduces the risk of relapse. If Prof Dasgupta is happy who is a mere GP to question it?

[Hollyseden in reply to PMRpro]

Love it! Exactly, who indeed