docter said i should stop 5mg prednisone one week befor my shot.
have been off of it for 5 weeks. got my second shot. Doctor said to wait 2 weeks befor i start again. Pain was bad so I started 5mg again 1 1/2 weeks early. hopefully this helps my PMR
Stoped prednisone for 5 weeks to get my covid vac... - PMRGCAuk
Stoped prednisone for 5 weeks to get my covid vacine shot
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Walnutwood
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I am amazed that your doctor said to stop prednisone before your shot. It is certainly not what I have heard to do and is not good to just stop like that. I am not surprised the pain was bad and glad you didn’t have any more serious problem with your adrenals
I am so sorry you doctor gave you such bad advice.When I read some of the comments on here I feel so blessed to have at least 3 doctors at our surgery who seem to understand PMR. I discuss any problems I have with one of them and they prescribe according to a mutual agreement as to my needs. I am hoping to come down to 9 mg tomorrow after a month on 9.05.
My doctors advise a month each time I reduce by 0.5 and have issued extra 1mg pills to do this but if I feel any pain I can go back to the higher dose.
I have had the vaccine, taking the Preds and had NO side effects other than a bit of arm ache for a day.
I do hope you get sorted.
My doctor didn’t give me bad advice. I think you should be replying to Walnutwood not me
DorsetLadyPMRGCAuk volunteer
Why on earth did your doctor tell you that!
If you suddenly stopped Pred it’s lucky you didn't go into an adrenal crisis...do you have any issues other than PMR symptoms?
No other issues. I am new to this. Just about 2 mouths. I did taper from 10mg to 5mg in about 6 weeks. I think I should see a rheumatologist.
If that is how your GP is "managing" you definitely need to see someone else. Though at least you hadn't been on pred terribly long so it wasn't as bad as it could have been. However it was unnecessary and I hope you can get the symptoms under control again. What dose have you restarted at? You probably need to go back to the start.
He did not say so today I started 5mg. Should I know in a day or so if that is enough?
Were you OK at 5mg before you stopped or did you already have a return of symptoms? If you were OK at 5mg it might work but you might need a few days at say 10mg first to clear things out a bit.
I felt good on 5mg. It is the weekend so wont be able to see a doctor. I think i will do 10mg tomorrow for a few days and taper down weekly by 1mg until I get to 5mg.Next week find a rheumy . that can't hurt right?
If you were good at 5mg before and have just been on 10mg for a week you can drop to 5 straight off if you want to try it - or maybe try 7.5mg first. But you hadn't been on 5mg very long had you? Sometimes it takes a few weeks to catch up with you.
Thank you very much. I was on 5mg for three days.This is a great site for info.I'm glad I Shared my story. I will definitely have to donate some money.
Then I think I would do 10 and try 7.5mg - see how you get on.
It is indeed a great site and good that you shared. Be advised by PMRpro and DorsetLady but please don't share your Doctor! Personally, I'd try to find another GP before consulting a Rheumy.
Judging what your current doctor has advised on tapering and stopping Pred - you definitely need to see another one - whether that be a GP or a Rheumy.
Yes. You need help.
PMRproAmbassador
Your doctor told you what????? To stop long term pred cold turkey at 5mg? Where on earth did he get that idea from?
Other than the PMR do you feel OK? If so you have been very very lucky. You could have suffered an adrenal crisis and become very ill.
Yikes!!!
Words fail me, I wish I could have 5 mins with your GP.
Is it possible to move to another practice or if there are more than one GP in the existing practice make sure you see another. I am in a practice with 4 GP's and one I would not even let help me up never mind see.
Joining in the general shock horror. How irresponsible of him.
I am not that impressed with my GP, but he is a shining light compared to yours. I shuddered on reading what was recommended. He seems to know nothing about steroids.
I haven't picked-up where you live.
I'm in UK. Checked out jabs and pred before I went for the first. Checked with the doctor at the site and, as expected, got the all-clear (at about 8mg I think). Then had second jab. No ill effects linked to pred.
As others have said - get a second opinion / care with a different GP. I'm sure you've picked-up from this site that GP's and rheumatologists come in all different shapes and sizes, many of the small stature variety!
All the best.
Change your GP! My Mum had a face to face with her Rheumatologist and as a nurse I asked re research into management pre vaccine, answer ‘do not stop steroids or Biological therapies pre and post vaccine.
I wasn’t told to stop my Pred. Why would we be told that.
Where on earth has your doctor gotten this misinformed view from? The advice is that patients continue on their medication. His view is reckless and could lead to harm. If you are in the UK please direct him to the advice in the Green book on vaccination practice in the hope that he doesn't give the same advice to any other patients. I am very sorry that you have had this advice. If I were you I would restart the pred asap.
I join all the other sage voices on this forum, I was never told to stop pred before my vaccinations, so dangerous to stop so suddenly. However, it confirms my belief that many GP are very ignorant about PMR. Having my monthly blood test last week, I asked the practice nurse if someone could ring me with the results and advise on tapering(currently on 15mg) She said I won’t be contacted if it is “normal or near normal” I will have to ring and request someone ring me back!I tried to explain to her it is only normal because of steroids and I just want help on tapering but she didn’t get it.
Thanks to this Forum I have the confidence to tell the GP, when I get the rare opportunity to speak to one, how I think I should be adjusting my dosage.
I have to book my blood test, I have to chase the result then I have to get a doctor to ring me back. I am telling the pharmacy what I need and collecting it.
There’s a lot of work involved in having PMR.
Thank-you everyone for your valuable opinions/ information/ own experiences, I would have been lost without you all.
I agree. Primary Care in UK seems to have gone down the drain
He needs reporting!!!!!!!
Extremely bad advice. Hard to understand how a competent physician could recommend. Malpractice (if you can’t guess, I’m an American).
What!? Not good to stop like that - body can’t cope change your doctor!
surprised that this was advice given you. My doctor said nothing about going off prednisone. I have had the 2 Pfizer shots with absolutely no adverse effects, My GP was delighted that I had them
How long had you been on Pred?
about 7 or 8 weeks started at 20 went down to 5mg
You were very lucky you didn’t have an adrenal crisis!.....
Apart from the fact there is no rationale in stopping Pred before Vaccination your GP asked you to do something potentially dangerous
Dangerous! Unnecessary! Ridiculous! Hope you find a new informed doctor/rheumy that will oversee your care with some insight and professionalism. As many others have chimed in, his instruction was very dangerous. Can’t help but thinking what would happen to me if I followed similar orders. Sometimes we must advocate for our health, which can feel intimidating, but necessary to ensure our needs are being met. Glad to hear you are ok (albeit sore), and hoping a brief return to a higher dose will address your built up inflammation, and that you will be able to get back down to 5mg.
I seem to remember Prof. Dasgupta saying in his recent talk that it was essential to have the covid vaccination.
Words fail me!! Get yourself another GP who understands PMR and treatment. X
I carried on taking mine. Wasn’t even advised to stop them
Welcome to this forum and so very happy you joined us before continuing your treatment. You will get wonderful advice here from those who have PMR, GCA or both. I have had GCA for 1 1/2 years and feel like a newbie compared to others who have had a diagnosis for many years and are still willing to help others.
It’s interesting, I read a response from a doctor (from the CDC?) where he was asked about impact of those with immunological diseases on meds such as MTX, Pred., et al. and he exclaimed these people were excluded from the first set of studies and it’s not known, but he believed anyone on less than 7.5 mg/d Pred would be fine and it wouldn’t compromise the response, but it really isn’t known at this time.
Doctors also aren’t in solidarity. I was taken off 15mg MTX / week prior to my Carpal Tunnel surgeries in January, was told to stay off until I got my shots. I decided not to go back on it. Told me I was fine with the Pred for the COVID-19 vac. On the Walgreens pre-shot form it (got my 1st dose of Moderna) it asks I was taking >20mg Pred/day for more than 2 weeks.
My 87yo mother who was on 10mg/wk MTX and 5mg/d Pred for over 10 yrs her doctor took her off the Pred cold Turkey a week before her shot and told her to stay off of it for 2 weeks after her second dose! She started taking the 5mg/day a week and a half ago (she has RA and Osteo arthritis) and experiencing pain. I asked if she had increased her pred or contacted the doctor and she said she was going to give it another week! Anyway, I digress. They actually don’t know so doctors are winging it. To me common sense would dictate that it depends on the dosage and how long been on it. Does one stop taking these meds before getting the flu shot? I was always told by my doctors, no problem. What is the average efficacy for the flu shot 15-30%? What is the efficacy of the genome vaccines, >90%. Let’s say being on immunosuppressant drugs cut it to 50%, that’s still a lot better than what get with influenza, so I don’t understand the concern. Even the J&J is 60%, cut that in half and it’s 30% which equates to a flu vac on its best day.
I’m just at a point where I think everyone is at a heightened state due to it having been over a year in this pandemic.
Well all I can say is, you are lucky you still have a mum!!!!
The line has been from the start that no-one can guarantee ANY immunity until 2 weeks plus after the first shot - it takes that long to develop. A study on cancer patients shows a single shot does very little; after the second, administered at 3-4 weeks as recommended, they just about catch up. The primer/booster effect is significant. But people have acted as if it's fine as soon as they have had the first jab. I suppose the difference is that even with such good responses to the mRNA vaccines, Covid isn't flu and the main problems with flu come from pneumonias that can be managed better than the Covid pneumonia.
PS - the flu CAN be up to 50% - very much depends on the luck of the draw and they choose the right viruses to include in the shot.
I agree, and it’s because many people can’t read, nor listen to what has been told to them. My wife and I have been following CDC guidelines from the beginning and will continue to do so. Wish everyone did the same.
Definitely a #Metoo moment!
I too am amazed. I actually asked my doctor about this and he said absolutely NOT to stop taking my pred. I do hope you get sorted, and that the pain slows down.
Everyone has said what needs to be said, and all I can say is I am sorry that you were put in such a position. I have discovered over time - now 4 years - that this forum, PMRGCAUK, and 'dr google' for any/all science papers I can access gives me better understanding of the issues, and then I can make up my own mind about risk etc. GP, and Rheumy, have been OK, but nothing like reading up oneself. I certainly understand my own body when it comes to action/reaction, and it does not always conform to the medical textbooks!!!What I have not been able to understand is the risk elements around mix of pred etc with Astrazeneca. Had my first dose, minor reaction, and just hope that won't be too long till my 2nd dose. I have no idea if pred etc have reaction with AZ recombinants.?!
Good luck with find a sensible GP.
Prednisolone suppresses the immune system. That’s fact. However I can find little evidence to indicate how the response to Covid vaccination is affected by the medication we take. I suspect nobody knows yet. There are also many other variables, decreased immune response with age for example.
I’d be much happier, having other comorbidities and after shielding for a year, to know that I wasn’t taking undue risk when lockdown ends. I’ll probably still use a mask and certainly social distance. I’m also going to take one of the quantitative antibody tests to make sure I have a response to the vaccine. What a sufficient response is is another question entirely, but at least some response would be encouraging
I’ve been mulling the same thoughts of late, again having been Shielded for a year, have you looked into the availability of the quantitative antibody tests?
Yes they are available. Some home finger prick tests and you can get a private test at certain clinics where blood is collected by venepuncture. They’re not overly expensive for the peace of mind they might (or might not!) give. I just wonder how accurate a quantitative finger prick home test might be, despite the blurb. As I’m still shielding there’s a certain reluctance to travel to a clinic. I could always ask my practice nurse to take some blood for me I suppose!
I’ve just had a read up & the same thought crossed my mind, if l couldn’t get one on the NHS l wonder if they’d do it for me when l get my regular blood tests?....
Suspect it’ll depend on your doctor. Not sure if they’d offer it on the NHS but they might take some blood for you if you take in a test kit when you have a blood. I wonder whether there might be some reluctance in case they might get large numbers wanting to do the same. As PMRpro says I’m sure the data will be looked at at some stage to see how well the vaccine performs for people on immunosuppressive drugs
My husband Mac, just got his Covid shot today! it was recommended that he take it on the week in between his Actemra shot. He is on slow taper and on third week of going down to 19mg/split dose. He got Moderna. His doctor said, no worries!! I know if Mac quit, he would be in a full blown adrenal crisis. You are extremely fortunate not to have had a adrenal crisis. You need a different doctor! Sometimes, I believe we need to screen doctors to see what they know first!!
There are no worries about having the vaccine - the question remains how good the immune response will be for someone on immunosuppressant medication.
That’s the question I worry about. The vaccine itself appears perfectly safe.
I’ve had my first AZ jab. I was told that I’d be getting the Pfizer but when it came down to it it was the AZ. The doctor gave me the option of , maybe, getting the Pfizer later. Seemed a total no brainer to take the AZ there and then!
They do keep pointing out that the best vaccine to have is the one that gets into your arm ... 
No-one should have any sense of security until 2 weeks post 2nd shot, whichever they get. And for most people in the UK there will be some evidence by then. They have already shown the first is not very effective for cancer patients because of immunosuppression but the second jab changes that so the earlier the second jab is given, the safer they will be. Next will be various medications I imagine.
When I had my vaccination in Swansea in February I told the nurse that I had Polymyalgia and she said that Steroids and the vaccine (Pfizer) were OK with each other. I have been down the “Cold Turkey" route (my own fault) with the Preds. before and I would have kicked up a heck of a row with anyone, qualified or otherwise who told me come off them!
well, I pray, he doesnt have a flareup. We have had a hell of 2 months. Blood clots for New Years, and month later cellulitis..he was almost down to 19 mg/split dose, but with all of that happening, symptoms appeaared and we had to go back to 20mg. So this is our 2nd week of taper. He got his Actemra on friday, and covid shot today on Monday. So far nothing except his usual insomia from Actemra. Racing mind etc...out of sleep spray, took a valium, lavender aromatherapy, hoping he gets sleep. Lack of sleep, can send him to the edge of a flare up!!! wish us luck. So glad DadCue you got off with actemra. Mac has been on predisone since July of 2016. Just feel his body is fighting to keep the predisone at higher levels. He got down to 10 a couple of times, and he had some symptoms, and we went all the way back up due to a GP that said we must..I believe that truly wrecked him. We have a Internal medicine doc now that agrees with the slow taper, and doesnot panick. Unfortunately the Internal med doc leaves in July. We are hoping by then we can travel back and get on service with the Rheumy that first diagnosed him in 2016...crazy how covid really messed up everything
I, too, had a flare after my first Moderna shot. Pain in my arm at the injection site lasted about 4 or 5 days and then went up to my shoulder, when it left my arm. Then my other shoulder, then my knees. Finally, I figure it was a flare and upped my prednisone from 4 mg to 5mg. Feeling better but worried about he second dose which is a week away. I think I shall stay at 5mg until then.
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