I’m being ahead of my game but....

[Doraflora]

I’m currently on a slow taper (DL’s regime] and have stayed on 4 mg for about 4 weeks now (having reduced very slowly by 0.5mg each time]. I’m definitely not in any hurry to reduce quickly, but thinking ahead [ok, I’m dreaming], to when the day comes when I get down to say 1mg, will it be essential to stay on the AA, Omeprazole and Adcal tablets or if the Pred is that low then can I stop the other meds?

All my meds seem to take up half a work surface, taking into account my newly prescribed BP med and now the added antihistamine, not to mention 2 lots of eye drops. Oh, how I took it for granted not being on a damn thing until my PMR diagnosis in March 2020. Hey ho....

[SnazzyD]

It’s nice to dream. Have you ever had a DEXA scan to see what your bones are like now?

[Doraflora in reply to SnazzyD]

Yes, not long after I started on all the meds. I was diagnosed with osteopenia but when I asked what my bone density was the GP said she didn’t know!!

We’ve since moved house and gone to a new surgery and sadly my GP said today (when discussing an unrelated issue)that he was unable to access all my previous notes as it is a different system!🙄.

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

Not being able to access notes is rubbish - unless you’ve travelled over the border to/from Scotland and different NHS.

It may take time to access records, but not impossible.

[Doraflora in reply to DorsetLady]

Well, my GP said today my old surgery must have used a different online system. What else can I do, I thought they were all able to access a central system....

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

Well in the good/bad old days - your records went to central system from old GP to be transferred to new GP - it did take time because they were written records and snail mail - but it worked! I had to access my record when I had GCA - and there was stuff from when I was a child - and much in between. Wasn’t totally complete as hubby was in Army so MOD has those!

Of course now all on computer - so theoretically it should be better! Ha,ha

[piglette in reply to DorsetLady]

Oh for the days of pencil and paper and filing cabinets!

[Nymocaaz in reply to Doraflora]

For future reference, ask for a printed copy of each visit when you are leaving. I keep a file of office visits, test results, etc. Most of the hospitals and practitioners here (U.S.) have a patient portal, where patients can easily access their medical records, but it sounds like you do not have that, so ask for printouts.

[PMRpro Ambassador in reply to Nymocaaz]

I fear in the UK that printouts are also pretty unlikely!! Don't think I would get them even here (Italy) from the GP but at the end of every hospital appointment you get a summary pressed in your hand, the consultant having written it while you were there. It does mean that they bear some relationship to what was said and done!

[Nymocaaz in reply to PMRpro]

The HIPPA law here radically changed patient access to their own records. The main purpose of the law was to safeguard patient privacy, which brought some inconvenience (no automatic access to a family member’s records), but practices adapted, and now it works very well. No need to depend on a medical office to get test results. Also, errors in medical records can be corrected in a timely manner.

[SnazzyD in reply to Doraflora]

Hmm, sounds a bit defeatist to me. If it’s down to it being all digital, then your old practice can print off info and it is usual practice in the UK to send a printed summary with the paper notes because of the different system issue. Your notes aren’t deleted as soon as you leave. Perhaps ask to speak to a practice secretary to see if they can apply for some old details from your old GP. How long ago did you have the scan? If it’s been a more than 2 years during which you’ve had steroids, it’s not an unreasonable ask to have a repeat. Osteopaenia isn’t an automatic call for AA and it has risks that go with it.

[Doraflora in reply to SnazzyD]

Mmm, that’s great advice, thanks SnazzyD. I’ll phone the old surgery tomorrow & challenge them first. They must have been given a bone density reading.

Our new surgery only seems to have so much of my records, which is a pain.

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD - you need to check your bone density….provided that’s okay you shouldn’t need AA nor Omeprazole.

I stopped AA after 4 years whilst still d all dose of Pred, but I am still on Adcal D3 as suggested following a DEXA scan done after I had finished Pred and GCA in remission.

[pollyg263]

when i got down to 2 i took longer to reduce just to make sure i was safe and didnt have to go back up again