I have been worked in a bit earlier (tomorrow!) than I expected for my mastectomy. I had a request in to speak to my rheumatologist but she was out all last week and yesterday, so her receptionist just got back to me this morning. The Dr won’t speak to me because I haven’t seen her in a year. She wants me to deal with my family doctor, who is new to me (6 months) and also newly qualified and frankly does not seem to know much about tapering off prednisone. And is also not in this week! To say I’m very unimpressed with her response is an understatement! I should also say that I had to wait a year and three months to get to see the rheumatologist, so by then it frankly felt like a waste of time!
So to my question! I have been on prednisone for more than 2 1/2 years. Diagnosed in April 2020. Due to some ridiculous advice from my family doctor at the time I tapered way too fast and had a massive flare. Had to go back almost to initial dose and start again. Was still told to taper too fast from 10mg down so I had another bad flare. Finally stumbled on this God-send of a forum! So I’ve been following the recommendations for tapering on this site, and also how to handle a flare in its beginning, before it gets out of hand. I am finally tapering very easily down from 5mg where I have always started to flare. This time no problems and I’m in the middle of the 4th week of the DSNS taper plan from 4 1/2 to 4 mg. The last week my hips (it’s always just my hips) have been a little tight/sore but not badly, which I would normally just keep an eye on. They have been that way mid taper all along, just for about a week. This time is a bit later in the taper than usual. So I’m not sure if it might be the stress of the upcoming surgery, although I don’t feel stressed at all! Having had this lump for more than 2 years I am so relieved to finally be having it removed!!
As I understand it, I will be given a large dose of prednisone before surgery either intravenously or as an injection, since I’m in that danger zone for adrenal insufficiency.
My question is given that large dose, should I also increase my daily dose, and if so, by how much? And for how long? And…would I take the increased dose starting the day after surgery, or the day of (given the large dose I’ll get that day)?
I did try to search this issue here but couldn’t find an answer re an increased dose and the surgical dose problem. As always thank you to those of you who are always here and so knowledgeable!
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Babysingstheblues
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It is up to your anaesthetist to decide how to monitor you during the surgery and also post-op. It won't be prednisone - it will probably be hydrocortisone during the surgery and that tends to be out of the body quickly
Make sure you make the anaesthetist aware before the surgery you are a long term pred user and that you need post-op steroids to prevent a flare. They should keep an eye on you then - and apply the Sick Day Rules for you. Do be insistent though - and tell everyone you meet about being on pred.
What is it about rheumies in Canada - not sure I've heard of a good one yet!
Mine is good….patient, flexible good listener, just very busy as the head of residency program so I have had to ask to speak to her directly during phone appointments (instead of the interns). She is my 2nd rheumy though….first one was a nightmare! For both I only had to wait about 8 weeks for an appt.
Hi - l have had a Mastectomy while on Prednisolone, l was on 7.5mg Pred - they give you hydrocortisone cover in theatre & afterwards if necessary.
The anaesthetist is your main man or woman, they look after you in Surgery, as Pro says make sure everyone who asks you you date of birth knows you’re on Steroids - by the time l walked into theatre everyone knew who l was & the ODA actually showed me the Hydrocortisone - l was more fixated on that than the impending Surgery…..
My anaesthetist rang my Rheumatologist the following morning & she put me up to 10mg for two weeks - then back to 7.5mg l also had a Nerve Block in my shoulder so l had no pain as such.
Make sure you wear an easy top/blouse for coming home & l had a small macramé shoulder bag to carry my drain, if you haven’t got a small bag take a small carrier or gift bag to put it in……
If l can answer any questions or offer any support please Private Message Me…..
Good Luck 🙏🏼🍀🙏🏼
MrsN
PS Don’t continue to reduce/taper as it maybe too much for your system……
Thank you so much Mrs Nails! Yesterday was crazy with cleaning the house so I won’t have to for awhile now😜, and with appointments, so I didn’t have a minute to reply. But I really appreciate your tips since you’ve actually been through this. Just waiting to go to the hospital in half an hour now!And thank you to everyone else who replied with good wishes and advice, as usual the site was a HUGE help!
good luck! You’ll be a member of the select mastectomy/GCA/PMR club, there are a few of us in it. Given you’ve struggled under 5mg, don’t be in any hurry to keep reducing until you feel less ‘surgeryfied’. Good advice given already so I won’t add.
Keeping you in my thoughts and prayers. Due to other health problems I cannot have surgery for my 'Beast', spread to other areas and bones but kept under control with meds. Luckily oncology, cardiology, orthopedics and GP all understand PMR. I am stable.God bless and a virtual hug.
Hello, Good luck I hope it all goes well for you today. I had a mastectomy and DIEP flap reconstruction whilst taking 7.5 mg per day. Your surgeon and anaesthetist need to be aware and will know how best to treat you during and after the procedure. I didn't have any issues related to the surgery, though the long rest required following probably helped my PMR. The following chemo didn't impact it either, so hopefully you will get through this OK. I didn't attempt to reduce until my treatment ended as some discomfort and stiffness was ever present in my hip girdle though not as bad as when first diagnosed.
all the very best for a speedy recovery. As has been said, discuss with your anaesthetist, ensure he is giving you cortisone during the op. Forget tapering for now. I didn’t increase before my hip surgery but 3days after started a flare, so added 5mgm which sorted it.
I just want to add further good wishes for your surgery. I am sure that many of us on this forum will be thinking of you and wishing you well. Am also sending a gentle virtual hug.....
Babysingstheblues I will keep you and your family in my thoughts. May your angels keep watch over you so you EASILY get through.this with a good outcome. I am so happy you have folks here to give you such great advice. Often it's the little things passed on from others that can reduce the stress and pain from something.like this. May your surgeon be flawless and the others in the theater watch over you with an eagle's eye. Take good care of yourself in recovery and let others step in and help as much as you need. When you are up to it please let us know how you are. One last thing...put a little sign on the wall by your bed that you are a long term pred patient
Great idea to put a little sign up that you are on long term pred! I'm having surgery in 7 days and I will do all these things. GREAT ADVICE! Thanks. Love this forum.
I hope yours goes well too. As if PMR was not enough...huh? A sign might help busy hospital workers. I am glad you found good ideas here. I hope you have a good result. Will keep you and your family in my thoughts. Let us know how you do once you feel like it. Hang in as you get closer to your day. Please take good care of yourself and let others step in as well. 💟💐🌺👍🙏
Sounds like you’ve had quite the wait for medical care and then some bad direction re tapering along the way. How unfortunate for you. I too am in Canada and had a terrible experience with my first rheumy but my second (current) one is great. I am part of a an online group here in Ontario and we have created a list of good rheumys in various parts of the country from PMR/GCA and recommendations made to the Vasculitis Foundation. Feel free private message me if you are interested to learn more. I will say I only waited 6 and 8 weeks respectively to see my two rheumatologists, but like you, I neglected to see my orthopaedic surgeon for over a year and was dropped, so now I’m trying to secure one closer by. My GP is an absolute gem and managed my care for 3 years of my 4+ year PMR journey thus far.
You have received some great suggestions from this wonderful crew. It’s so comforting to hear from others who “get it” (even if we are all unique individuals whose bodies may respond differently to similar medications and procedures). You’ve done well to get down to 4.5/4 with the help of this forum. Pay attention to those niggles on your hips….maybe stay at 4.5 a bit longer.
I wish you all the best with your surgery and recovery! Keep us up to date when you’re well enough to do so.
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