Hi everyone, I've been reading all the recent posts about problems reducing prednisolone with interest. When I was diagnosed in September 2023 (non cranial GCA) I naively expected my steroid reducing timetable, given to me on discharge, would be exactly as it was on the sheet.
I'm now down to 8mg per day, reducing by 1mg every 28 days, but my last blood test showed that my inflammatory markers had popped up a little bit rather than gone down. I've been feeling more fatigued lately too, which I now expect is all tied up with the steroid dose.
My problem is that I have to have "major abdominal surgery" in the summer. The colorectal surgeon wants to do it ASAP but not until I'm down to 5mg, which should, according to the timetable, be end of June. I'm worried that I'm not going to be able to get down to, or cope with that dose in that time frame.
I think I'm going to have to try to see my rheumatologist again soon to see where I go from here. I saw her in January but havent been sent another appointment yet and I'm pretty sure that the 2 departments won't have communicated so rheumatology won't be aware of the upcoming surgery.
Id be very grateful for any advice.
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Dance62
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Sorry to hear you need surgery. .. and yes you were a trifle naive in expecting your tapering to go according a piece of paper [but you aren’t the first and you certainly won’t be the last to do that😊].. and it’s something which I think we probably commended on in previous posts..
As you rightly say, you are entering the realms of your adrenals needing to think about working again, which probably accounts for the feeling of fatigue.
The rise in inflammatory markers may be related to your upcoming surgery, but might also indicate that your GCA is flaring…
You do need to discuss with both your Rheumy and your surgeon and see if some compromise can be made on the level of Pred you are required to be at for surgery to go ahead… Although the figure of 5mg has been mentioned, surgeries are often carried at higher doses, and if it were an emergency it would have to be done whatever the dose.
Whether you will be able to get surgeon and rheumatologist to discuss and agree on the situation is another matter, but you have to try.
Thank you for the advice, I have another silly question to ask now .... what are my adrenal glands supposed to do?? I've been reading on other posts about adrenals kicking in and I don't really understand what this means .
There is lots of info about adrenals in the FAQs - link is at the top of every thread in a box under your post.
While you are on higher doses of pred, above about 8mg, the body knows there is plenty of corticosteroid present so it suppresses the production of cortisol, the natural corticosteroid, as that would be even more too much. As you reduce the dose, the body has to top up the level for you to function well. But it DOESN'T "kick in" like flicking a light switch, it slowly wakes up, stuttering and wobbling a bit, over a period of months as you slowly reduce the dose of oral pred. Some people just sail through it, others really struggle, the longer you have been on pred, the slower it tends to be. But you can't forecast it, you find out as you do it.
You have summarised all the "problems" really well - so at least you know the state of play! I'm less sure the rheumy department and the colorectal surgeon are as well informed though.
To be at 8mg since a GCA diagnosis last September is a textbook taper - and as you know, we are of the opinion the textbooks rarely reflect reality so it is great progess. If the inflammatory markers are starting to rise, it could well be that 9mg was your lowest effective dose FOR NOW. And that means that your rheumy taper needs a bit of a rejig to avoid problems and your colorectal surgeon will need to put HIS thinking cap on because you may not get to 5mg without a flare of the GCA/LVV and that could send you back to an even higher dose to control that - because that will also be key in the success of the surgery.
You aren't likely to get them to commit to an MDT meeting (multidisciplinary team) - but you could try. And you are also going to have to break it to the rheumy that it looks like you are going to get stuck which isn't surprising. I fully understand why the CR surgeon wants the pred dose down - but what happens if the GCA/LVV flares up?
I'm in the United States, so our health system is different here. But when I was scheduling a colonoscopy, I was told that it wasn't the surgeon that needed to know about the prednisone so much as the anesthesiologist.
So, if you are successful in getting the surgery scheduled, make sure the anesthesiologist is aware. [Edited to remove some bad info: see below.]
They are both concerned when it is major abdominal surgery - the anaesthetist is the one who looks after you during the procedure, keeping you alive, and he needs to know you are a long term pred patient, what dose you are at and so on. He will administer hydrocortisone through an infusion during the operation and keep an eye on you post-op in case of an adrenal crisis. But the surgeon is equally concerned during the entire process because open bowel surgery poses a massive infection risk and pred increases that risk, especially at higher doses. Many surgeons will only operate in emergency situations if the patient is on pred.
Surgeons are always worried about infection and so like us to be on a low a level of steroids as possible. My surgeon wanted me on zero and in the end we agreed on 5mg. Did you try negotiating?
Good luck with your surgery, I hope it goes well for you. This might help to get the 2 departments talking to each other…
I’m having a hip replacement in 2 weeks and the anaesthetist has informed me that he will be administering a dose of steroids during surgery and will double my dose for a few days to counteract for my adrenal glands not functioning due to my current steroid dose.
I am also about to start methotrexate but he wants me hold off until after surgery as this could have the potential to double my risk of infection (steroids & methotrexate ).
I guess at the point of surgery, the surgeon & anaesthetist are running the ship. To be fair, my PMR and surgery do not seem to be a barrier and they have a plan to accept & mitigate the risks My rheumatologist is happy with this course of action too and I feel reassured that everything has been considered to keep on top of my PMR condition.
That all sounds very reassuring. I think my next step will be to talk to rheumatology before I next see the colorectal surgeon and hope that they can communicate in some way.
I had major abdominal surgery last year.Emergency operation.They weren't worried about what dosage of prednisolone I was on.I know it was increased as per sick day rulesduring recovery.I don't think your pred dose will hold your op up if it is urgent.The Surgeons know what they are doing.
Would suggest you seriously discuss with Rheumy Consultant and Surgeon especially if blood markers up. I had hip op with no upping of Prednisolone before, during, or after some years ago, think I was down to 5mg, and the Endocrinologist checking my Synacthen test a year later said I was lucky to be alive. All best.
That is something that is the responsibility of the anaesthetist on duty for your surgery - surgeons know no endocrinology and neither do most rheumies!!!
You've gotten some great advice....hopefully you can get the rheumy and surgeon to coordinate. I was doing a bit of research because last fall I was facing an emergency surgery (I was spared). I don't recall my exact dosage but am sure it was at least 10 mg a day. There was discussions of a 'steroid cover' that would be administered IV but I couldn't get as much detailed info as I would have liked. I wish you the best...I'm sure some others will enlighten us.💞💞
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