I've had a long tumultuous relationship with prednisone and would like to kick it to the curb permanently now. Eight weeks ago I had an adrenalectomy because I had a very rare Silent Pheochromocytoma. Blood tests this last week indicated that my remaining adrenal gland is doing its' job nicely and it's safe to reduce my prednisone further. Four days ago, I dropped to 4.5 and am generally doing okay--however in the afternoon I get the blues, am forgetful, non-functioning, and usually just hit the dirt.
My doctors say this must be ridden out. If I'm ever going to get off the prednisone, I have to endure the misery. They want me to get the covid booster and flu shot. I want those things, but I am absolutely terrified of getting them! I'll be sick as a mutt and will I have to up the prednisone to get through those vaccine effects? I think so.
Appreciate your thoughts and experiences.
Blurry62
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Blurry62
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“Blood tests this last week indicated that my remaining adrenal gland is doing its' job nicely and it's safe to reduce my prednisone further. “
Well, it might have showed adrenal gland is CAPABLE of doing job -but what you describe shows it isn’t up to fully functioning - it’s struggling…and that’s normal for lots of people.
Time, patience and a slow taper will help it recover-but it doesn’t just switch on like a light bulb…..but if it’s only 4 days since your reduction it could be steroid withdrawal. See if you improve over the next few days.
How have previous vaccines affected you and your GCA? How do you know you’ll be as sick as a mutt?
I appreciate your thoughts. You make sense. I'm trying to weather the storm. I've always been very sensitive to prednisone changes--even by .5 mg....not fun...I know I have to muscle through, and I've always found support here while doing so. Thanks !
I have always been very sick after receiving vaccines. It's my history with them that causes me to expect it. Headache, body pain, and fever that lasts a week to ten days. With GCA I wondered if this ramping up of things could cause a flare and warrant a stress dose.
I’d be more inclined to take paracetamol to counteract all those symptoms - in fact I do. 24 hours prior to vaccine, then 24-48 hours afterwards - have for the last 15 odd years, any vaccine, with or without GCA.
That may mitigate a flare, it may not, but it’s worth a try initially. Then if it doesn’t you have the backup of increasing Pred. Don’t really want to increase “just in case” -but of course, as you say it’s your body and you know it better than anyone else.
Why should you need more pred to get through having the vaccinations? Paracetamol is probably more likely to help the effects of a sore arm and the blahs for a day or two. You don't KNOW you will sick as a mutt - but if you think you will be, it could be a self-fulfilling prophecy!
I KNOW because every vaccination ( Flu or Covid) in the past has produced marked body pain, fever, and headaches. I KNOW because I know my body. In the past, when I've been ill the doctor has said to take a stress dose of prednisone and thought, perhaps, vaccination might call for a stress dose, too.
Being ill is one thing - and you may need extra pred to replace the adrenal surge of cortisol it would normally produce to deal with the illness. Under normal circumstances you wouldn't call the reaction to a vaccine being ill and if it is part of your body's immune system response it is questionable whether taking pred is a good idea since you WANT your immune system to respond to the vaccine.
snow would help my mood...I long for snow...it's 80 degrees here and I ( naturally) don't like it right now. With lots of snow--I'd have permission to hole up and get out my Christmas tree. I need merry.
Thanks for your input. Grumpy me is going to go to market right quick. I stress--RIGHT QUICK 😜
Do you think you could cope with snow on the T.V ?I could do without the level of cold and wet right now , this mild spell is doing me nicely as it stops the Raynaud's kicking off.
Although , I'm not an early tree decorator myself , we have friends who do and we arranged a rule for the one who goes mad ( a male Christmas obsessive) He is allowed to put his tree up no earlier than November 7th , after all the Bonfire festivities are over, so you could use the same rule and you'd only have a few days to go.
I have another friend with a tabletop tree that she changes the decorations or lights on depending on the season , Easter , Christmas etc. I've got a vase of branches with little lights and tiny crochet ghosts and pumpkins on at the moment , plus my broom and witches hat are standing in the porch scaring off any passing travelling salesmen!
Face, head, neck and shoulder pain ramping up. GCA or Prednisone withdrawal???? How to know? I reached out to the Rheumy and Endocrine specialist both. The Rheumy said he was fine with the endocrinologist tapering the prednisone so long as I show no symptoms of flare. The endocrinologist seems to have the goal of zero prednisone. I shot him a message reminding him--politely- that I have GCA and want to be monitored for a flare as we go down. ( .5 each month) More advice please.....
Knowing whether it is a flare or steroid withdrawal is much the same whether it is GCA or PMR - if the symptoms improve over a week or so it was your body complaining about the lower dose of pred. If they get worse - probably a flare. So it is immaterial whether you have GCA or PMR.
If and when you get the vaccinations I would suggest you have them on separate days , at least two weeks apart , to prevent the possible post jab side effects causing you extra symptoms or a flare. Build up your strength with nutritious light meals , plenty of fluids and some slower days beforehand and the effects will be easier. Paracetamol, fluids , Vitamin C and plenty of rest helped me through my COVID jab , the flu jab this year gave me no side effects or Fatigue at all.
You sound like you a doing well despite your added health problems causing such a toll on you so I'm giving you a pat on the back.
You would probably benefit from choosing not to reduce your steroid dose again until after you have coped with the effect of having your vaccinations but not increasing it , so if you are up to it , making appointments for the jabs would be wise to do as soon as you can.
The afternoon wall hits us all , even those with no health issues , but the wall is just more spiky and higher to scale for us.
You could work out exactly when the Fatigue hits and try some Self Care techniques to make it more bearable.
I have found a little light stretching and a gentle stroll just before I reach my wall doesn't make me slide across it so badly.
I then choose to have a nice cool drink of water and a cup of green tea .
I sit and choose that time to have a bit of ' Me' time by closing my eyes and doing a relaxation breathing session and gently massaging peppermint lotion into my hands and feet or doing a bit of skin brushing with a very soft baby brush or fur mitt.
I sometimes choose the time after that to read , draw or do art therapy in a comfy space, watch something cosy for an hour , speak to a friend on the phone, or just put on relaxing music and allow myself a Siesta putting on the alarm at 45 minutes so that it revives me but is not so long that it could make me dopey for the day or make my insomnia worse.
The wall usually lasts about an hour and a half upto two hours for me , but I know it's a daily obstacle and trying to knock it down or push through it won't stop me having to face it everyday and it makes it worse by not accepting this . So , I do this down time ritual totally guilt free and find that as I pass the wall using care techniques that I get a more positive surge of energy after it , so I'm more productive and in less pain to do the early evening jobs .
Hope that helps , and I am very impressed with how well you are progressing despite your illnesses and setbacks , I hope you are impressed with yourself too. Take care , Bee.
Midsummer Murders is definitely on the watch list when I watch something cosy. It does cheer you up , especially when you can think to yourself , " Well , things might be bad but at least I'm not going to suffer Death By Gazpacho!" , Take care , Bee
Unfortunately, this emotional state can be part and parcel of that time when the body begins to take over for itself again , your autonomic nervous system will be going haywire and the swings are worse in time with your body clock.Giving yourself time to relax and use Self Care is probably as important during this Adrenal Phase as it is at the beginning of the illness. Its a time to set in routines and pace yourself carefully so that the body can rebuild a sort of memory of how to cope with what happens and when.
I'm glad you have such a good support in your husband. Have you chatted to him about what is happening to your body at the moment and how tired and irritable it can make you. I've found giving my husband the heads up early on what is going on , and how it might effect my ability and behaviour saves both him and me a lot of pain or rude words later.
Yes. I have alerted him Unfortunately we've been here before. We like to watch Miss Scarlett and the Duke. He usually isn't a fan of BBC but started watching All Creatures Great and Small and Miss Scarlet to keep me company. Now, he likes them a lot. Yay!
I understand what you're telling me about the self-care. I'm trying.
Thank you
What's happening in Doc Marten these days? I don't get to watch here yet. hahah
It's great you're generally ok. Well done! Could be withdrawal making this feel worse at the moment. Andrenal stuff has to be ridden out; I find it goes up and down. Also it would be well worth separating the vaccinations. Sounds like you're on the right track, keeping it slow and steady.
I asked my GP yesterday what I had to do to get the jabs separately - and she said she agreed it was not a good idea. She trained as a rheumatologist first - not sure if she thought "at all" or "especially for people with autoimmune conditions" though
I don’t think it’s a good idea for all tbh… I declined having mine 2 days apart -although they weren’t offered on same day. Our practice has 2 surgeries - main one in town does all vaccines, one in village doesn’t/cannot do covid…
Thinks most surgeries that offered both together are doing it for their convenience.
How do I tell the difference between GCA flaring and prednisone withdrawal? Rheumy says his goal was to get me to 5 mg and then hold and see how I would tolerate anything lower. Endocrinology seems to have a zero prednisone goal. I sent him a message about my GCA concerns and asked him to reach out to my Rheumatologist.
steroid withdrawal usually comes on within a day or two of reducing dose -a flare takes a week or so, sometimes longer to materialise se. This post gives more details -
Thanks for this post. It's helpful. I sent a message to my endocrinologist to remind him I'm a GCA patient and that my" pred goal per the Rheumatologist was 5 mg. then we would evaluate before tapering any further." I felt it important to remind the endocrinologist that we need to keep GCA management on the radar--not just adrenal function.
Just had the flu jab - now have to call to get a Covid jab appointment. Is a week enough??? Not that I want it next week - have appointments for something almost every day! Sleeting merrily here ...
"I don't expect you to be there immediately!!!"... well some do, as we know😏..
Yes, it was was, she's in similar situation to you re OH, and everything is still a bit raw, and now has a lump by her jaw which is rather ominous, but being monitored very carefully ... so fingers crossed. So think she appreciated the coffee and chat...
Probably about same timescale as you... he was an engineer and mad keen on the Vulcan bomber... went everywhere to see it.
His daughters have managed to get his name inscribed on the undercarriage of the existing one at Doncaster Airfield ( soon to be rehoused I believe) and on the hanger door - so the family are going up later this month to see that, and hear it being fired up!
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