Four weeks ago I taper to 6,5 prednisone. Struggled with soreness and fatigue. 2 weeks ago I got the civud booster. Sick as a mutt and functioning at a low level last Friday, but functioning.
Saturday morning I reduced my prednisone to 6 mg. And seemed fine except for lingering fatigue. Saturday night I suddenly started freezing. No fever. Shaking and jerking in my abdominal and thighs . This lasted an hour and a half. Intense ear head temple joints...you name it.. suffering.
Er said they thought I needed more prednisone.
Thoughts? Has anyone experienced this?
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Blurry62
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Ooh dear. I’m not clear exactly how long it was since your vaccine and this episode. Sounds like you spiked a fever for whatever reason such as a virus, infection elsewhere or possibly the vaccine or GCA. When that happens, anything and everything can hurt and its grim. Who is “they”? Has the cause of the fever been established? Not sure i would have reduced my Pred so soon after a vaccine because the body is working hard for a good 2-4 weeks after and you weren’t exactly recovered from the sounds of it.
Sorry, missed that bit, no idea why. In which case I’d also go with adrenal crisis too. By crisis I mean an acute lack of cortisol/cortisone to support you throughout the challenge of a vaccine reaction. I’ve two bad ones and they came on very suddenly and I felt very frightened, instinctively knowing I was in deep trouble. After the extra Pred I had to go to bed and not move.
I think there is a post about sick day rules in the FAQs. Have you seen/spoken to your family doctor? Usually they say to double the current dose to a maximum of 20mg (i.e. if you are on 12mg when it happens you just take 20mg). Did you actually go to ER? What did they say?
Oh yes. I did. The pain was intense. They said raise the dose to where I was a month ago and call the rheumatologist - which I did. Still waiting for a call back.
Update: I saw my internal medicine doctor yesterday. He agreed with this forum - I should have had an increase in prednisone when I was diagnosed with pneumonia and that the booster further depleted my cortisol- my adrenals could/can not produce what I needed/need. He agreed with all here too- that I needed to double my prednisone in order to recover. I'm on 13 mg daily now. He suggested I try a split dose to avoid waking in pain. I took 10 mg at 9 yesterday morning and 3 mg at 4 in the afternoon which kept me awake and miserable all night. Now I need advice on the timing of taking the prednisone so I can sleep.
If you take all the pred at one time when does the pain come back? If you take the morning dose as early as possible after midnight - ideal is 2 to 3am but early morning does too. That will bring the second dose earlier - and give you more time to get it out of your system before you go to bed.
Forgot to ask - was the awake and miserable pain or the pred?
If it was the pred and it were me, I'd try the bigger dose a bit earlier in the morning (assuming you don't want to wake in the middle of the night), say 6 or 7am, and the rest at lunchtime. It really is a question of experimenting to find what works for you because no 2 people are the same.
I have been absent with updates because 9f internet issues. Here is what's happening now. I went to internal medicine and he increased my prednisone to 13 mg. One week later I am at 12 mg on a split dose. I take 8 with breakfast and 4 at lunch.
If you have advice regarding this , I welcome it. I feel miserable with ored symptoms like bloating and headache.
I was at 6.5 twelve days ago, the GCA specialist raised it to 10 to get me through that suspected adrenals issue. Then the internal medical doc said that wouldn't be enough and raised it to 13 and said to taper once I felt stable.
Does this taper have to be DSNS .....I want out of this prednisone chaos.
If you are only at the higher dose of up to 10 to 14 days you can drop quickly - some would do it in a single step, others would do it more slowly. But no, you don't really need DSNS.
Depends on the circumstances then - but you wouldn't drop to the dose at which the problem arose. But the longer you are at a higher dose, the more effect it will have on the adrenal function.
Hardly surprising if you weren't told to use the Sick Day Rules approach with regard to your pred dose to compensate for poor adrenal function - any illness puts a major strain on the body and would normally be responded to by the body producing more cortisol. When you are on pred long term that response is blunted so you have to artificially compensate for that with more pred. There is an article about it in the FAQs.
Very interesting post. I reduced to 7.5 ( I’d gone up to 8.5 before my cruise and stayed on it till after flu jab last week) on Sunday. Mid afternoon I suddenly was very cold and shivery, lower back pain and pains in both legs. First thought was a UTI or a bug. Went and had a lie down then felt nauseated and had dry heaving for a while. Spent rest of day in bed, mostly asleep. Paracetamol took leg pain away. Yesterday felt a lot better but legs a bit achey, again paracetamol worked. Today feel ok 🤞. I’m thinking maybe 1 mg drop was too much. Should I increase or stay where I am?
I'd give it a few days to see if it improves - those sort of things can happen without it being due to the change in dose. Might be different if it had carried on much longer.
Um sorry this has happened to you, but glad to hear something like ny experience. This I day 2 of 10 mg and I feel rotten. Back pain and fatigue. Still queasy. I expected the 19 mg to perk me right up. It hasn't done so.
For what it’s worth, I had the flue jab 10 days ago and at that point was on 6.5mg of Pred. Within days I started a reduction from 6.5 to 6 using DSNS, and had PMR type pain in the shoulder of my right arm; the left arm was ok. The throbbing pain would surface at about 4am to 6am, I’ve paused the 6.5 to 6 reduction, ie I’m back taking 6.5mg, and last night was my first pain free night. I plan staying on 6.5 for a month before attempting the taper - but I could be called for the 3rd Covid jab in November so I may stick at 6.5mg longer than planned, ie 2 months before attempting the taper.
Hi Blurry62 - that all sounds horrible and quite scary. I'm not qualified to comment on it in any way.
BUT I would like to suggest that you may be trying to taper a bit too quickly.
You mention that you had tapered to 6.5 and you 'struggled with soreness and fatigue' (for two weeks). That seems to indicate that 6.5 may not be enough pred. and the step down was too sudden.
There are many people in this forum who have personal experience of the 'plan' of reducing (on one day) .5mg every 4 weeks which is recommended by many GPS and rheumatologists, not working because our bodies don't work by our calendar.
I'm assuming you have gone back to 7 - following your doctor's direction. If you had anything of the soreness and fatigue, or other PMR pain, when you were on 7 before, can I suggest you go back to 7.5?
There is a lot of information about slower tapers on here. If you look under Topics - to the right of here, there is a heading ' (Tapering steroids) If you go in there, there is a ton of helpful information about different, slower, tapering plans.
It took me a month or more to get to 6.5. In hindsight I think there was too much for my body to recover from. I had double pneumonia 7 weeks ago, got the booster two weeks ago-really sick from that- reduced to 6mg for one day and that night all went ballistic.
I have been taking more that a month to drop by .5 mg.
I am on 10mg. Now per gca specialist directions to calm things down. But 8 feel so rotten. Afraid this isn't normal but read that someone else has experienced something similar and felt funky after an increase. I am tired of being sick.
an interesting read and always useful for a newbie to try and understand what to expect when getting down there. It does sound like you went one step down too many Blurry62
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