Hospital Dr has said I need to stop pred? - PMRGCAuk

PMRGCAuk

20,332 members38,094 posts

Hospital Dr has said I need to stop pred?

Booboos171 profile image
27 Replies

Hi, I know it's late and maybe no one will see this until the morning but...I have been admitted to hospital today as I had severe abdominal pain, my inflammation markers are quite high, I've had an ultrasound and waiting for a CT scan now. When the Dr came around earlier, he said if I need antibiotics I will need to stop the pred, I've never heard this before and wondered if anyone has experienced similar? I would be very reluctant to just stop!I'm currently tapering down to 4.5mgs.

Thank you as always for reading x

Written by
Booboos171 profile image
Booboos171
To view profiles and participate in discussions please or .
Read more about...
27 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Very worrying for you, hope it’s soon sorted…

Not sure where your doctor is coming from, but many have been on antibiotics without having to stop Pred -I took a couple of courses when on very high does with my GCA.

And to suddenly stop Pred is very risky - you could suffer an adrenal crisis. I don’t suppose you have your emergency steroid card to show him.

Maybe show him this - endocrinology.org/endocrino...

Wishing you well 🌸

fmkkm profile image
fmkkm

Hi Booboos,Looks like you’ve been taking prednisone for about 3 years, correct? My understanding is if you just stop at 5mg you could potentially go into an adrenal crisis. Please pull a rheumatologist in for a second opinion pronto!

Have they identified the source of your abdominal pain yet? The raised inflammation markers could be from that, not necessarily from PMR.

Over 6 years I have had antibiotics for UTI, sinus infection and possible Lyme exposure. This was at various levels of prednisone so please kindly ask the doctor to explain, I would like to know his reasoning, I’m always open for “current “ information 🤷‍♀️.

PMRpro profile image
PMRproAmbassador

I've never stopped pred for antibiotics. Remind the doctor you have been on very long term pred and are at a level where adrenal function is likely to be severely compromised. In fact, if you are ill, the recommendations are likely to be to INCREASE the dose in line with Sick Day Rules. They also need to have the new steroid card brought to their attention. Here are the links to the articles on the forum about them:

Sick Day Rules:

healthunlocked.com/pmrgcauk...

Steroid emergency Card:

healthunlocked.com/pmrgcauk...

piglette profile image
piglette

I wonder why on earth your doctor said you should stop the pred to take antibiotics. Sounds most strange to me. Do you know what sort of doctor he is? Is he a specialist? Also about how old is he?

Exflex profile image
Exflex in reply to piglette

Probably because the Dr in question skipped too many lectures, particularly the one on the adrenal glands and the HPA axis.

Bcol profile image
Bcol

Hi Booboo, nothing to add to the comments already made, suspect the doctor who saw you needs a reality check on your condition and long term steroids.

nallufl24 profile image
nallufl24

I was on 60 mg prednisone and had to take a strong antibiotic for a cat bite that got infected. No problem.

SheffieldJane profile image
SheffieldJane

You must not “just stop” ever. It is very dangerous and you could go into an Adrenal crisis and even die. His superiors would be horrified. Are you sure you heard him correctly?I have taken antibiotics several times alongside Pred. Many of us have. He needs to explain his reasoning ( still insist on a second opinion if they have taken your drugs away). Do you think he might be intending to give you a steroid injection because of your abdominal pain and the tablets making it worse? Please let us know what happens and what they find? Your instincts are completely correct. I hope it is nothing serious. Good luck!

SunriseHope profile image
SunriseHope

I was on Sulfatrim DS 800/160 mg Monday’s, Wednesday's and Friday's for 3 months while titration from 50 to 10 mgs of prednisone . While not happy about that, I didn’t seem to suffer anything bad from being on it. It was an infectious disease dr that put me on it with the blessing of my rheumatologist, just treating GCA , nothing else.

Booboos171 profile image
Booboos171

Thank you all so much for your comments ❤ I truly appreciate every one, I can't reply to them all individually at the moment but in summary, they can't find what the cause is, after a CT scan suspecting diverticulitis (also appendicitis and other things during the long day!) They now aren't sure but are happy that it's moving out now? Not sure if that if they the words he used but gave me that impression! I was discharged at 11.15pm and allowed home, which I am very grateful for 🙏 I have to go back on Tuesday morning for more tests. So I've have my pred dose for today 🙂 no idea why he said I couldn't have them (he definitely said that, my daughter and partner were visiting me at the time and heard it too), the lady in the bed next to me said they stopped her usual meds too. A mystery..Anyway, off to sleep in my own bed, which feels even better than usual I have to say!

Thank you again you lovely people 😘

calibriel profile image
calibriel

I agree with everyone who has said you should ask for a second opinion, and also note the comment which asks how old the doctor is. I don’t like to undermine doctors and your confidence in them, but I wonder if you are in the UK; and if so whether you know that a massive reshuffle takes place on 1 August when all the junior doctors - who do most of the doctors’ legwork in hospitals - move to new placements at the same time. This doctor, although competent and qualified, may be new to the specialism they are working in at the moment

PMRpro profile image
PMRproAmbassador in reply to calibriel

Not so much these days - though it's true the newly qualified ones appear at the start of August.

Hildalew profile image
Hildalew in reply to calibriel

You and PMRpro hav just reminded me - many years ago after having blood taken by a brand-new totally inexperienced young doctor on his first day, I think- I 'made a resolution' to avoid needing hospitalisation in early August! I think that was about 30 years ago - the 'resolution' has worked so far.

PMRpro profile image
PMRproAmbassador in reply to Hildalew

One problem is that in the past they knew that the senior nurses would keep them right - nowadays either the senior nurse is too busy or they think they know better ...

Poll8 profile image
Poll8

Hi, I have had PMR for a couple of years now and after a messy start with pred. and a GCA scare last Sept. I thought I had the measure of it. Since February this year I have been diagnosed with 2 separate cancers, lymphoma and thyroid, neither connected to each other and am about to get tested for a 3rd....melanoma. I am very lucky that these all have a very good prognosis so..onwards and upwards. 👍I had 3 separate biopsies so far and for each one was on 10mg pred. so had to stop abruptly before the biopsy as pred. clouds the results. I stopped pred completely each time within 3 days..I had NO side effects whatsoever each time..must say I was pretty amazed as I expected hell to unleash it's wrath after taking it for so long. I have yo-yo'd backwards and forwards since then but settled to 10mg eventually, last week went down to 7.5mg. and as part of my treatment, which started 4 weeks ago is a hefty dose of steroids, I will continue to taper down slowly.

I m sure this is not right or good for everyone, but for me this was the right way to go especially as the first biopsy failed as I hadn 't stopped pred. soon enough they thought..not something you really want repeated often.

Having said all that, I take antibiotics every day as part of my treatment and have been told to continue taking pred for PMR even though I have 55mg. steroids intravenously with my chemo treatment every 2 weeks. Must admit, only had 2 chemo sessions but feeling good so far.

Don't try this at home, as they say on TV, without PROPER medical advice.

Hope your feeling good soon..there is only one way to go....forwards. Best of luck 😃 x

@

Booboos171 profile image
Booboos171 in reply to Poll8

Oh my goodness! What an awful time you've had, I'm so sorry to hear that. It all sounds very positive and you yourself have a great attitude, sending love to you 😘

Poll8 profile image
Poll8 in reply to Booboos171

Thanx 🥰 speedy recovery to you

SheffieldJane profile image
SheffieldJane in reply to Poll8

I am sorry to hear of your extremely worrying time. I tend to believe everything has a connection. I am so glad that your prognosis is good. Wishing you a smooth journey back to health. 💐💐💐

Poll8 profile image
Poll8 in reply to SheffieldJane

Thanx 🥰

PMR2011 profile image
PMR2011 in reply to Poll8

What do they say, trouble comes in threes? You certainly seem to have experienced that! Am guessing at least for the thyroid biopsy you had some anesthesia? If so, most likely the anesthesiologist gave you a Pred equivalent like dexamethasone. They usually add a little more than what you’ve been on to manage the stress. Otherwise you may be one of the lucky ones who’s adrenals were not very suppressed. it still seems a bit risky to me.

Good luck with all your follow up!

Poll8 profile image
Poll8 in reply to PMR2011

Hi, thanks for your good eishes. Actually the thyroid biopsy was the only one I had without anasthetic..said they only wanted to go into neck twice and anasthetic would cause too many puncture wounds?? He was actually very good and very quick, so I coped with that surprisingly.Rheumy said it was risky to keep stopping pred but necessary..I had phone consult after every time, but no actual follow up.

Absolutely not the right or safest move for everyone. Guess I've been lucky so far

Exflex profile image
Exflex

Bizarrely yes. I was admitted with suspected sepsis and IV antibiotics were administered. The first junior Dr I saw said the same, “you’ll have to come off steroids…” I thought that was a load of *******s so I mentioned the conversation with another more senior medic. He said, “no that’s wrong, you need to double your dose…” As I was on 12.5mg the dose was increased to 25mg. I felt wonderful the next day, and surprise surprise they couldn’t find the source of infection, but nonetheless antibiotics continued. I was discharged 3 days later and continued the course with oral antibiotics. The big mistake the hospital made was to put me on a taper from 25mg that took ages to get back to where I was at 12.5mg. In fact after 5 days I could have dropped back to 12.5mg. This forum is a goldmine of helpful information.

SheffieldJane profile image
SheffieldJane in reply to Exflex

I bet they are thinking of the immunosuppressant effect of steroids and the possible impact on the efficacy of antibiotics. An experienced doctor sees the whole picture and gets their priorities right. It is essential that we become well informed patients to self advocate when necessary and ask the right questions. My son in law doctor knows all about PMR because of me and now often comes across it in his Australian practice.

Booboos171 profile image
Booboos171

Thank you everyone for taking the time to respond to me. The replies this morning are a little more mixed, it certainly is confusing. For now I'm just grateful that I didn't have to make the choice in the end, hopefully the further tests will be ok too. Hearing what some of you have had to go through is definitely humbling. It might just be one of those things! Hope you all have a lovely Sunday and thanks again, it's so comforting to have access to this wonderful group x x x

SheffieldJane profile image
SheffieldJane in reply to Booboos171

I think Poll8 was a special case with alert doctors standing by, if that’s what is confusing you. The majority advice stands, ask any Endocrinologist “do not (suddenly) stop Prednisalone “. 🌼

Poll8 profile image
Poll8 in reply to SheffieldJane

Me and my rheumy would agree with that good advice ❤️

Miacaro45 profile image
Miacaro45

I agree with mist everyone. You can be on antibiotics with Prednisone. You should not top the Prednisone abruptly.

You may also like...

Should I increase Pred. dose for minor procedure in Hospital?

years now. Actually got down to 1mg last year, but had 3 major flares in quick succession after...

Dr. Said I should feel almost 100% on 15 mg.?

might be the problem, like fibromyalgia. I have had fibro for 20 years, and this is not the pain of...

I need to get OFF pred ASAP

doing me no faves. Last time I had pmr/cga no symptoms atall .this time lots and lots 😩 Now...

Do I need to increase my pred

months. Problem is, I, like PMRpro, had to stay on 5mg of pred, as per the rheumy's instructions....

Relapse after stopping Pred

Was first diagnosed 2007, responded well to Pred. Really slow reduction as seemed to get symptoms...