Guidance please is: I saw my GP recently and he... - PMRGCAuk

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Guidance please is

gemmalaura profile image
18 Replies

I saw my GP recently and he advised me that I am not immunosuppressed as I am below 7.5 mg prednisolone. Has anyone any thoughts on this as I believed it to be 5mg.

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gemmalaura profile image
gemmalaura
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18 Replies
PMRpro profile image
PMRproAmbassador

I think it also depends on how long you have been on pred. If you are a long term patient and have been at a higher dose previously, it is unlikely that the immune system has recovered - if you have been on pred at that dose for only a short time it is probably fine but for us on this forum, I wouldn't like to take anything for granted. Are you a long term steroid patient? Your profile doesn't say anything about your history.

gemmalaura profile image
gemmalaura in reply to PMRpro

I have been on Prednisolone since 20th December 2018 for PMR started on 20mg then in August 2019 was suspected to have GCA dose upped to 60mg biopsy did not confirm this so reduced to 40mg. Have been reducing slowly ever since, got down to 4.5mg a month ago but had a flare in the shoulders so went back to 6.5mg for 2 weeks and am now on the 7 week taper to 5.5mg. Thank you to all of the contributors for the advice it is much appreciated.

Louisa1840 profile image
Louisa1840

Sorry, I replied to this but I think it got posted elsewhere. My pharmacist says you are not immunosuppressed unelss on 20 mgs pred. I wonder if this applies to long term users like us though as PMRpro says?

PMRpro profile image
PMRproAmbassador in reply to Louisa1840

Just replied to it - with a quote that suggests being on 5mg pred for 3 years ie enough to double the risk of a bacterial infection because of the immunosuppressive effect.

gemmalaura profile image
gemmalaura in reply to PMRpro

Thanks for that. It clarifies things more clearly. Good luck.

calibriel profile image
calibriel

I’ve had similar advice - be careful, but no need for the 4th jab. I’ve been on pred approx 18 months and have been successfully reducing - was almost off it when I had a possible flare about a month ago (dr and I still not sure whether it was pmr or something else, such as bursitis or arthritis), which has been controlled by going back up to 5mg briefly, now reducing again … I do realise this is vanishingly small compared to what some on this forum have to take, but I do welcome the info and advice I read here. So, in conclusion, there does seem to be some sort of watershed below which we’re not considered to have compromised immunity … but who knows? Sorry, that’s probably not v helpful: just wanted to say you’re not the only one to have that kind of advice

gemmalaura profile image
gemmalaura in reply to calibriel

Yes the advice from health departments is rather confusing. Thanks for your help. Good luck.

Broseley profile image
Broseley

I haven't heard anything about my 4th jab which is due today, so I'm going to ring the GP. I'll post on here later what they say. I was on 40mg, now down to 17.5.

PMRZ profile image
PMRZ

My understanding is that you are eligible if you were on 10mg or more at the time of your 1st or 2nd vaccinations. There is a link to the guidance somewhere on this site. My partner is now on 8mg but he was on 10mg when he had the 2nd jab so the specialist (eventually) agreed that he was eligible. He had his 3rd three months ago and I have just picked up a letter from the doctors to say he’s eligible for his 4th job, so he can now use this letter at a walk-in centre.This forum is a Godsend, I would never have known about it otherwise. We are going to Malta in the middle of March, so I will be much more confident that he has now had his full dose of vaccinations before we go.

Dorsetgirl17 profile image
Dorsetgirl17

Been on Pred just over two years and now down to 2mg. Had my fourth jab done on Friday.

bonio profile image
bonio

As far as I know from a lot of digging, it is about the cummulative dose of Pred, especially in the 3-6 months prior to vaccination. If you've been taking over 10mg in that time, say for 3 - 6 months then you qualify for the 4th vaccine, if you were taking under 8mg then you may not. An awful lot seems to be up to your local CCG. I had to do quite a lot of persuading and i've been on over 10 since last April, now finally after quite a battle am shakily on 10mg. Good luck.

gemmalaura profile image
gemmalaura in reply to bonio

Thanks for all of your hard work. Good luck yourself

Predsharer profile image
Predsharer

My rheumatology nurse said that prednisolone is an immunosuppressant, so therefore is suppressing your natural immunity, so anyone taking it needs the fourth jab, whatever the dose they are taking.

HeronNS profile image
HeronNS

Where I live a list saying who would be eligible for third primary dose was posted and people who had been taking pred dose of 20 mg or more for at least two weeks were among those eligible. I do not believe this is an appropriate level. I believe long term low dose pred has not even been considered. Early in the pandemic a paper was released prior to peer review (released early because it was felt the results were important given the pandemic) which indicated that immune suppression from pred did not appear to be dose-dependent. In other words, no matter what dose of pred one is on, one is at risk of immune suppression. Doubtless effects are worse at higher doses, but PMRpro's point about effects from long term dose even very low is an important consideration.

Pixix profile image
Pixix

My doctor said it was time to look forward, not back, & that as I was on 5mg at the time we spoke, I don’t need the 4th jab, &, on the basis of PMR & steroids, I am no longer vulnerable. It’s in my notes, & that’s that! I’ve accepted it & moved on. It’s not as if I have blood cancer, like a friend of mine!

gemmalaura profile image
gemmalaura in reply to Pixix

Yes that's where my doctor is coming from. His final words as I was leaving his surgery were live your life.

Pixix profile image
Pixix in reply to gemmalaura

If not careful, PMR could rule your life completely! Some days it’s good not to think of it, & be happy!!

gemmalaura profile image
gemmalaura in reply to Pixix

Yes thanks for that sentiment

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