Since the covid vaccination program began, I've very deliberately had every single booster offered....7 in total.
I've always felt that protecting myself from catching covid is both sensible and responsible.
However, I've not been able to have this years spring booster yet as I cannot have the Moderna vaccine and that's all that's being offered in my locality and surrounding areas.
In my efforts to source a Pfizer vaccination I've contacted my GP surgery, over 20 local pharmacies and the NHS covid helpline, but no one has been able to help me source a Pfizer vaccine. (Unless I paid £100 for a private one)
I contacted my local MP who contacted NHS England, who explained there is a clinical pathway for referring patients in my situation, so they can access an alternative vaccine to Moderna.
I showed all this information to my GP Practice, but unfortunately, the 'Green Book' advises that if on less than 10mg of steroid you now don't require one.
I've been on steroids for 5½yrs now but because I'm currently taking 2mgs daily I clearly no longer fit this criteria for eligibility.
I know we can't store prednisolone in the body but I thought (maybe wrongly) that I'd still have a degree of immuno-suppression even at 2mgs.... mainly because we're repeatedly told that the longer you take steroids, the more harm can potentially be done to the body, so thinking logically, if they suppress your immune system at higher doses then this surely doesn't diminish significantly with long term use...even if you've tapered to lower doses.
I'm completely confused now as to whether I'm still immuno-suppressed or not.
Any thoughts gratefully received.
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Kendrew
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GREAT question. I would like that answer too. Even more I would like the answer to the question if it doesn't stay in our body..... then why accumulative damage over the years__ I am lowering to 1.5 and in lots more pain that doc says is from the OA that was being masked by prednisone and prednisone withdrawal not PMR. And if it doesnt get better I will get another drug. I wonder if the other drug or 2 tablets of paracetamol are worse than 2mg. of prednisone. AND yes are we immunosuppressed!!!_ I skipped the booster this spring waiting for new concoction next month by Pfizer. THANKS for asking this Kindred. )(ha! auto connect. .. but you ARE a kindred sprit Kendrew
I managed to come off pred 2 months ago buy this week was Covid 19 positive. I have been unable to get anti viral drugs or even free Lateral flow tests now that I no longer take Pred. It does seem odd that I was immune suppressed 2 months ago and not now. The good news is that I am recovering well and seem to be on target for negative Covid this weekend. All I have taken us 4 paracetamol every day.
Immuno suppression is relative. It is like being on a see saw. If you take a lot of immuno suppressants you will always be stuck up in the air on the see saw. As you reduce you will start to sink down until you are always on the ground.
I believe we are still immune compromised , we are still steroid dependent and people who have taken steroids previously should still notify medics I believe for either 1 or 2 years later .
I could absolutely not tolerate the Moderna , there wasn’t anywhere for a free Pfizer vaccine so paid £50 for Novavax .
I was a little disappointed as the vaccine to help protect us against the FLiRT variants isn’t available until Autumn.
I’d ignore that person and insist you’re immune compromised/vulnerable until you have been free of steroids for the 1-2 years.
I personally believe the length of time matter's almost as much as the dose .
I've been on pred for 3 years. I am now down to 1.5 mg. Because of the dose being low I couldn't get a spring booster and am having to pay £10 for 5 LF tests. I've now got Covid pretty badly - I'm sure it would not be this awful if I'd been immunised but after 6 months the protection is negligable (my last booster was in October 23) . I'm feeling really cross that my health has been compromised by bureaucracy
I have had no experiences that makes me feel I am immunocompromised - and I have been on pred for 15 years and Actemra/tocilizumab for over 2 years. In Italy we only get offered annual boosters, mine come in the autumn to protect us over winter - though we are half way through by December when I got mine last year!
I definitely have been immunosuppressed through my PMR journey...ghastly fungal infection (never had before), celulitis (never had before), tiny skin tears that have become infected. I don't know about colds, flu and covid, because I have kept away from people the whole time I have been on steroids (5 years). I live alone and work (online) so being more ill than I am now is just not an option.,, no one to look after me and no income would be an impossible situation.
After 5 years of isolation, and being 5 years older, I guess my immune system won't be up to much. I will go for the Covid jab in september/october. Probably worth paying for if you can't get it on the NHS.
It is interesting that you have mentioned a fungal infection as I’ve had what definitely appears to be a fungal infection on both big toenails which coincided with the onset of my inflammatory illness 4 years ago. Nails not growing, terribly discoloured and ridged and now breaking away from my toes. Rheumatology dismissed any connection so have had them tested through the GP route and results came back negative so altogether a mystery!
I also agree with you completely on the question of paying privately for a vaccine as I have just payed £450 for two courses of the Shingrix vaccine as ineligible on the NHS and although I feel strongly that I shouldn’t have had to pay I believe that protecting my health and not having the worry of potentially becoming very unwell is so important that it was worth every penny.
Hi Hightower 62. The diagnosis of PMR I received six and a half years coincided with fungal infections in both my big toes. I have treated these over the years with products brought from pharmacies. The toes did not seem to improve until a few months after I reached a regular low dose of Predisolone. I have been on under 2mg per day for two years now which may mean that my own immune system has kicked back in again. (GP always reluctant to organise a test on this!). SO, yes, I certainly associate the fungal infection in my toes with the diagnosis of PMR!
I was told 10mg & under, not immuno compromised, with regards to steroids, by my doctor. I don’t think that most people here are truly immuno compromised. My reasoning is that lots of people here are leading normal lives, they mingle with relatives, go on holiday (& I don’t believe many wear masks at all), go to restaurants & shops & parties. If immuno compromised they would get sick a lot more, surely! During my worst period of being so, years before PMR, I had 6 chest infections in 8 months, I was sick nearly all the time. I saw a raft of specialists, at the end a Professor in charge of a big lung unit, & he said I had a choice, live a limited, but healthy life or be sick a lot of the time with infections as my immune system is compromised. If anybody i am in contact with has an infection I catch it, we have to shield every winter because of this. I see people here,in the main, leading a normal life as regards mingling with people, going to the pub, parties, being with relatives etc, going on holidays & not catching more than normal amounts of bugs. We haven’t been in a pub for years, never get to go to a party, have 95% of stuff delivered, & wear a mask in every shop. We can’t do anything people enjoy at Christmas!! On holiday, we wear an FFP2 masks from airport door to the other end. We self cater on every holiday, haven’t had a coffee in a cafe for many years! That’s the life of an immuno compromised person. I have a friend with blood cancer, & that’s how she lives, too! I made just one mistake this year. I had a injection into my broken coccyx & had a lie still, face down on couch for 15 mins without moving. I couldn’t breathe through my mouth, so had to ditch mask. 3-4 days later I had Covid. It was the only inside place I’d visited for 3 weeks. I was the only person in the hospital with a mask on, visiting my husband daily for weeks. I don’t see others in shops wearing them, just us. That’s the life of an immuno compromised individual. I didn’t come under the new Govt rules for the booster. I coukd have seen my Dr, made a case, & had one. But it was easier to pay £80 for a private booster & easy to organise. I was very sick indeed with Covid & still have the symptoms after two months & will be seeing my Dr next week because of it. But I stayed out of hospital, for me, a miracle! In a three year period I had 67 courses of antibiotics, most of them IV, in hospital, sorry for long story, but that’s the life of an immuno compromised person, & it ain’t much fun!! We wore masks to live & travel before the pandemic, already had a supply & were used to shielding! I’m surprised you couldn’t find a private injection that wasn’t Moderna, though. Hard luck. Oh, & I’m on antibiotics every life…for the rest of my life…if I meet a bug, I can’t fight it, but hopefully the antibiotics will!
Firstly I can see what a challenging time you've had, and indeed, are still experiencing.
I'm truly sorry you're having to go through all of that and hope things eventually get easier for you.
I know that there are many others who are more seriously immuno-suppressed than myself and I wasn't in any way trying to undermine that.
I know I'm luckier than many others but that doesn't mean that I'm still not scared of contracting covid.
Unfortunately, I can't know how it would affect me unIess I catch it myself, hence the need to know just how immuno-suppressed I might be, if at all, particularly as I go into hospital in 4wks for a small op and know this'll make me more vulnerable.
I too take appropriate measures to protect myself and I do wear a mask when necessary, and I do avoid gatherings and crowds.
I agree that for the many people who don't have medical/health problems to contend with, life now seems to carry on as if covid never happened, but I think you'll find that for most of those experiencing 'issues', taking appropriate precautions is still a priority.
I did manage to find one outlet for a private Pfizer vaccine at a cost of £100.
As I'd incorrectly thought I still met the criteria for a free vaccination, I didn't feel it was fair to have to pay without exploring further.
Thankyou for responding and I wish for your situation to improve if and when possible.
Thanks, Kendrew. They are only just finding things out about the latest wave of Covid, & the new strain, so far I’ve read it’s ‘worse’ & ‘lasts longer’ & I can agree with that. I spent four years dreading it, & am almost glad I had it, even though I’m still suffering because it means I actually didn’t die!! The dreading it was almost worse than the having it! Personally, I think you would be better if you’d just paid the price & had the booster. It brings peace of mind & May have saved my life. I can’t imagine feeling much worse than I did, & if I hadn’t had the booster!! I went to a local Pharmacy when I thought I was eligible, it was the pharmacist that let me read the new Govt guidelines to show I wasn’t. It was then easier to pay & go rather than try & get a free one, as our surgery had no vaccines left in their stock!! Also,David got sick very suddenly& I was visiting daily for 6 weeks, apart from the Covid period. We never thought of that…it’s important to have the booster so you can look after others! You can still get the booster now, I would think, thought it’s late, people may have stock. I don’t think the Govt changed the criteria on a whim, or to save money! When it labelled everybody on steroids as vulnerable it was at the beginning, & now they know so much more they realise that it’s not the case that everybody on steroids is vulnerable & immuno-suppressed. You have to be on 20mg now, I believe, & for some time. It makes sense to me, especially now I’ve survived Covid! You don’t think of people on 5his forum routinely ending up in hospital with Covid…that would happen if they were immuno supressed!! It happened to my friend. You’re right if you’re thinking you probably didn’t need the booster, I reckon. We would know if pred was a real problem by now, the posts would be filled with people & horror stories! Hope all goes well for you, & I’m sorry you’re so concerned. I know you’re being careful, but I did expect to see others in masks in 8 weeks of hospital visiting, & I didn’t see one! The guy in the bed next to David had Covid. David had pneumonia, sepsis & cholecystitis by that time, just six feet away, but didn’t catch it. They did test him before discharge, though! Good luck!
Wow....pneumonia, sepsis and gall bladder all at the same time. That's pretty horrendous. Thank goodness covid didn't join in too.
I agree that this new strain seems to be making people more poorly. My next door neighbours and a close friend have all just had it, and all felt really ill with it.
Also, all of them had caught covid twice previously but not particularly been affected by it. It was a bit of a shock when they all fell so ill this time.
I think you hit the nail on the head when you said that "the dreading it was probably worse than actually having it"!
Likewise for me, it's the 'not knowing' how much it would affect me should I catch it.
You're comments along with others has reassured me to a degree and I will probably pay for this booster, because whether I actually need it or not, it will make me feel I've done as much as I can to protect myself.
Good news! I think it’s a great idea, as the new strain seems more virulent,. There’s definitely a wave now, & it was being handled inthe hospital by using side wards, but they ran out & admitted to me that it was on the open wards now. Hospital didn’t give David the pills he’s on for life for his heart, Warfarin, & we found out one month after the test that he has Deep vein thrombosis, too. They lied on his first discharge papers, too. A lot to handle right now, as hospital internal investigations ongoing & we were asked to make 3 formal complaints about things that went wrong! It’s quite a ‘nice’ feeling…to have beaten Covid, but after David’s double dose of pneumonia he can’t get it…so both of us sending each other into shielding mode right now!! Hope all goes well for your op! S x
Sorry for my delayed response... I've only just noticed your last response to me.... for some reason I didn't receive the usual notification when it came through.
My goodness you're dealing with a lot. Just compiling one complaint is a difficult enough task, but to have to compile three!!!
It can be so scary when you know you have to be one step ahead of the medical practitioners all the time, just in case they miss something or make an error of judgement.
Wishing you luck with all that and a good outcome.
Thanks & yes, it’s a pretty rough year, really. Could do with a break, but motorhome now broken down, & garage says it’s not just the engine battery!! You know…it never rains but it pours! S x
Yes, me too, I’ve had numerous lung infections, courses of antibiotics even though I’m already on low dose antibiotics. I’m on steroids but awaiting immunosuppressants but I am already immune suppressed. I only go to hospital and doctors and that’s were I get the bugs unfortunately. It’s no life but it’s the only life I can have.
I quite agree. It’s a very different life, & other people don’t know so many of us are restricted…we were before Covid, & now it’s even more so! I’m lucky because most friends understand, & mobile hairdresser doesn’t come if she has a cold etc etc. but I feel a freak explaining it sometimes. A friend of mine who had breast cancer described it as ‘living in a bubble’! Can get you down sometimes, for sure. We are lucky, & live ina National Park & love the outside,so live a very outside life, but do envy others sometimes, for sure! Take care, Sxx
Hi Kendrew, yes know how you feel, just paid £100 for pfizer vaccine,great not even a sore arm no side effects so to it's worth it would spend the money on new jacket that I don't need so each to there own worth it for easy mind xx
It's all very confusing. Last December I caught COVID. I phoned 111 and the COVID team called me back. I explained I was on 5mg of Prednisolone and that I had been taking steroids since 2016. I was told that I didn't qualify for anti viral taking 5mg but I did qualify as I had been taking steroids for 7 years! By the time they had explained the options and possible side effects of the drugs I decided not to have the course of antivirals. My worse COVID symptoms lasted 5 days and I tested positive for 14 days. In fact, I have had worse colds! I put this down to having had all the vaccines.
I got invited for the Spring cohort but when I looked online I no longer qualified as I was on 4mg of steroids then. I spoke to our pharmacy who said that they would vaccinated me due to the length of time being on steroids and having mild hypertension. However the pharmacy only had Moderna vaccine. I decided against that as I have been having Pfizer. They agreed and said they would let me know when they got Pfizer in stock. Last I heard!
So I don't think I will qualify for the next one now but waiting to see what's offered.
Recently got a chest infection which did not test positive as COVID. I tested 3 times over 7 days all negative. Far, far worse than when I had COVID and has taken me 3+ weeks to feel better. I had antibiotics for this. Still got a bit of a cough now but the phlegm is now clear. My son also got it and it wiped him out for 2 weeks and he's fit and healthy normally. Guess there's more than COVID to get to us out there!
I’ve been confused about being immune-suppressed since the beginning of Covid!
To start at the end, I did get invited for the spring booster, at which point I was on 6.5mg, having been on pred since July 2019, with a couple of ups and downs along the way. One of the venues offered was my local pharmacy, so I booked there, thinking they’d have access to my full prescribing history and it might be less hassle … and it was fine and I got the booster.
But going back to Covid, I didn’t get the original shielding message, but then got one about a fortnight after they'd supposedly notified everyone … then got another letter three weeks later to say I wasn’t severely immune-suppressed and carry on as “normal”. The main advantage to that was the supermarkets did put me on the priority delivery and click and collect lists!
Fast forward to the vaccines appearing, and I wasn’t even sufficiently “at risk” to have any priority in getting the first two jabs … but then they decided I was sufficiently immune-suppressed to need the third dose of the initial course. And since then I’ve been invited, and been given all the additional (and seasonal) boosters.
So I get the impression no-one really has a definitive view, and a lot of it’s down to individual’s interpretation.
The medical practitioners are given guidance and protocols in what's called The Green Book. They have to follow this guidance as its a legal requirement. It currently advises that 10mgs or less does not constitute immuno-suppression .Not really what I wanted to hear as I'm only on 2mgs!
Interesting! That’s certainly not what I’ve been on when I’ve been called for the non-seasonal boosters … and I’ve never been asked for the exact current dose.
That was the point I made to my GP... I've had a total of 7 vaccinations now and been called for all of them, the last one obviously being last autumn. Had I been okay with the Moderna vaccine, I would now have received that too, but because I've been trying (unsuccessfully) to source a Pfizer vaccine, all of this confusion has come to light. It's all because the criteria for eligibility has now been changed!
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