medical evidence/advice re. tapering at lower doses (below7mg)

[Mfaepink1973]

Can any of you lovely people give me some references about tapering at lower doses and how symptoms not blood results should be the priority. I want something preferably from a specialist in PMR that I can show my GP .

[PMRpro Ambassador]

I don't know of any that fit what you need - I am looking though!

Were your ESR and CRP raised at diagnosis?

[Mfaepink1973 in reply to PMRpro]

Thanks PMRpro, Yes, ESR was 73 and CRP 35.2 in March 2023. ESR went down gradually to 10 in Sept then rose to 23 in March this year. The only CRP levels shown on the My GP app are the 35.2 last March and 7.6 last July. Each time I’ve had a blood test all I’ve received is a text saying “Bloods ok” !!

[PMRpro Ambassador in reply to Mfaepink1973]

Don't think they are really thinking are they!!! Those results last July are a fair guide - anything above that should result in close monitoring ongoing. But they only rise when there is enough inflammation for long enough to trigger the liver to produce the proteins that cause them to rise. And when you are on pred, that shouldn't happen. But that doesn't mean you can just drop to a lower dose because the PMR has gone, it just means you are currently on enough. Whether it is just enough or a lot too much can't be seen until you overshoot the dose you need. I doubt it is something that has been studied - it is something a good doctor understands with experience, just as we do, and studies cost money ...

[Mfaepink1973 in reply to PMRpro]

I’ve not been monitored except for the first 2 months after diagnoses. Every few months I’ve made an appointment and had CRP and ESR checked but that was of my own volition and as I said I’ve just had a “Bloods ok” text back . It certainly doesn’t inspire confidence!

[PMRpro Ambassador in reply to Mfaepink1973]

Doesn't does it!! You do need to know the actual figure so at least YOU are keeping an eye out for levels creeping up.

[DorsetLady PMRGCAuk volunteer in reply to Mfaepink1973]

Can you access blood results via surgery medical records or NHS App.. it gives actual readings as well as comments... or is your GP surgery still working in last century.

[Mfaepink1973 in reply to DorsetLady]

I have the MyGP app which shows the dates of the blood test and shows the ESR figure but the CRP only shows a couple of readings but just the date for others. I’ll ask for more details at the surgery today.

[Indigo2417 in reply to Mfaepink1973]

I don’t have the GP app. I can phone for the results or put in a request form online, but they only tell you that Bloods are ok. Now, I ask for a copy for my records and I have to go in with ID and collect a copy. I have only been tested twice, once in August when I first became ill, and then in November. I’m going for another test today, but mainly because of another issue. While I was with the GP, she asked about my steroid dose and she said “ we’ll test for that while we’re doing it”. So far, I’ve had no specific follow up and I’m currently on 7mg.

[Bcol in reply to Indigo2417]

The NHS app will now give you all these results. You will need to sign the agreement form at your surgery.

[Indigo2417 in reply to Bcol]

That would be good, but does it apply to NHS Wales?

[DorsetLady PMRGCAuk volunteer in reply to Indigo2417]

Seemingly so. Have a look here -

app.nhs.wales/login

[Indigo2417 in reply to DorsetLady]

Thank you DL. I’ll have a look at this. It would save a 14 mile round trip every time I need to pick up a print out of my results.

[DorsetLady PMRGCAuk volunteer in reply to Indigo2417]

Let’s hope so…..

[Indigo2417 in reply to DorsetLady]

Have just checked and our surgery is listed, so we’ll have to see about getting set up. Mind you, I hope they’re more accurate with their records than measuring distances. They reckon our surgery is 3.6 miles away, and it’s actually about 7. Hmmm.

[DorsetLady PMRGCAuk volunteer in reply to Indigo2417]

Oh... that's a good start😏.. and if it's same as England one it takes info from GP surgery anyway...

[Indigo2417 in reply to DorsetLady]

Hi again. I have just gone through the registration process online. They say a lot of people are trying to register at present, so it might be up to 13 days till I receive their confirmation email.

[DorsetLady PMRGCAuk volunteer in reply to Indigo2417]

Hopefully won't take that long... but at least you're in the system.. 😊

[PMRpro Ambassador in reply to Indigo2417]

Is that as the crow flies rather than by road? If you google distances for places in south Fife to Edinburgh, some apps don't take account of needing to go via the Forth road bridge crossing!!!

[Indigo2417 in reply to PMRpro]

Could possibly be as the crow flies because some websites tell us that our nearest whatever branch is in Exeter or whatever. Completely ignoring the Bristol Channel.

[PMRpro Ambassador in reply to Indigo2417]

Exactly, happens with the Firth of Forth!!!

[Karendeena]

Hi there, I was under a very good rheumatologist who gave me the best advice. When I got to 5mg (after my GP tapered me too quickly) he wanted me to reduce 1mg every 3 months. I negotiated with him to go 1 mg every 2 months to see how it went. When I got to 3mg I started to reduce by half mg which went pretty smoothly. When I got to the last 1mg I went to half mg then finally half mg every other day. I did it, it took a long time but I got off them this way in January this year. I did have some aches and pains but worked through it. The 3 years I was on prednisolone did weaken my muscles which I am still trying to build

[Polygolfer in reply to Karendeena]

I had a similar pattern approach and like you some withdrawal symptoms as it takes a while to properly revv up the adrenal glands… good if you to battle through and hang in there. Because this is different for every individual one never quite knows for sure if it’s a mild flare or just withdrawal / adjusting to life without steroids!

[Mfaepink1973]

That’s similar to my taper which I did from advice on here. It’s only now a GP has decided to get involved and expect me to taper from 6mg to 4mg which I am not prepared to do

[Koalajane in reply to Mfaepink1973]

You are right and your zgP is wrong