After chat on here with PMRpro and others I added 5mg. I had gone through an awful fatigue etc very slow drop from 6.5mg to 6mg. It took me about 5 weeks and was feeling good after 2 weeks on 6 every day but stiffness started at week3. Now had 13 days on higher dose...11/12mg.It was better some days and has never worsened really. It would be fine in mornings but appear later. There is no pain or extreme discomfort.
What has been awful is the return of the tight head, not functioning well and generally not wanting to engage with anyone or anything. Back to lying down late afternoon.
Anyone there had similar experience?
I have been on pred for over three and a half years and sailed through most of it after the first symptoms were knocked on the head early days.
However any setbacks seemed to happen after covid came and I reacted to jabs and boosters. Mid-October this year I had been on 6.5mg for about 5 weeks, feeling great so did that last slow drop to 6mg. It was awful. I now realise that I also had the covid booster at the same time!
Could this be to do with the flare??
I have read other posts here on similar. I think I should drop back after today to 6.5mg or maybe 7mg and see what happens.
Any thoughts or reassurance please.
'Bone chat another time.
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Ebiker
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I tend to forget the big impact external, emotional and stress factors have on tapering. I would return to 7 mgs until life settles down back to near normal. I think my last Covid booster left a lingering “ not rightness”. You will need extra rests. Factor them in, no matter how you feel, every day. This is a stressful time of year, even perfection takes its toll. You are not alone in feeling like the spectre at the feast at times. Just go for a lie down in a darkened room, it passes. X
Thanks so much Sheffield Jane. You have alerted me to something important here that I tend to ignore ie constantly monitoring how I feel and what should I do or not do, as well as stressing about other underlying causes there could be. I have too much thinking time when I am not well and thus not active!
Quite a few have stated their PMR flared after a vaccine (covid) or other….
Personal opinion - a drop to 7mg is likely to be too much…I’d try 9mg for week or two as an intermediate dose. Then providing you still feel okay, try 7mg.
My third Covid jab reaction took 3 months to settle. When I was reducing from 7mg, there were some reductions that were hard because I felt rubbish. After that I would assume that the next one would be bad too and it wasn’t necessarily. External and internal factors seemed to play a big part.
To be honest - I'm far from sure that it is a flare in the usual sense. Especially since you link it with Covid factors. The symptoms developing during the day is also very un-PMR-ish.
I had a bit of a flare after my second Moderna jab but it was more just fatigue than anything else, otherwise nothing until after the bivalent booster and it has knocked me for 6 with atrial fibrillation.
There doesn't seem much point staying at the high dose but how far you drop is up to you.
Thanks. I felt that it wasn't following the 'normal' flare path.Also in my head is the fact that my dexa scan a couple of weeks ago showed more % drop from last one, 3 years ago, than they would have expected. Readings are now in the osteoporosis bracket with drops of -6%, -10% and -13%.
However, she said readings were about average for someone my age!
I know in past slight arthritis in hips was picked up.
So really various bits could be causing the stiffness and tired head.
I have esr (last one was 2)and vit D tests tomorrow, as well as doc appt next week to discuss treatment for osteoporosis.
Bone profile for calcium is fine apparently.
I have twice tried adcal and it just doesn't agree with me.
My diet for calcium is good.
I believe I read on a post you mentioning a 'bone' med with no side effects? It started with P?
I doubt I have ever suggested ANY drug has NO adverse effects! My husband took Prolia with no apparent adverse effects for him. But it can also cause aches for some. And either you take it for ever or you have to take a bisphosphonate when you stop Prolia (also called denosumab). It builds bone very well but when you stop it there can be rebound loss of bone, especially in the spine, leading to fractures.
Adcal is a problem for some - my husband couldn't take it at all. He practically took off with wind! He was fine with calcium citrate though.
Thanks for that. Useful to have info before seeing doc. My system seems to overreact to meds so I would prefer to try a more natural route...diet, exercise.
It very much depends what your t-scores, how bad the bone density loss is and where. Unfortunately there does come a point where natural measures won't rebuild the bone in a short time. Then there is a role for medication.
As PMRpro says, there are downsides for any drug. Personally I think Prolia should not be offered as a first-line bone med for most people. PMRpros's husband was in special circumstances where it was the right choice for him. As for calcium, I've never taken calcium carbonate. I started taking calcium citrate in my early 40s, long before pred and PMR. Since then I've sometimes taken it, and sometimes calcium hydroxyapatite (because that is supposed to be more easily absorbed by people on pred). I always have it with a bit of food, usually my lunch, and in the evening with a small helping of plain kefir or plain yoghurt (neither of them skim milk, always with some % of milk fat) and have never had a problem, although on the rare occasion I only had water I did notice minor tummy discomfort!
Thanks for all this info. No I don't know T score. I will have more info next week when I see doc. Good to know alternatives. My calcium intake in diet is good but absorbtion??
Being on omeprazole for years, (but only high for a few months earlier this year) doesn't help all this but I am getting close to dropping that back to 10mg per day now that the gerd has been sorted. I take kefir every day as well as making sure I have fennel tea, ginger and lemon...all helps digestion.
For 3 years I had an intravenous infusion once a year. It improved my scores so that I am now osteopenia vs. osteoporosis. Can't think of the name of the drug but most doctors know about this.
If I recall the lowest dose you’ve been successful was 6.5mg. If you’ve been fine at 12mg split the difference and try 8-9 mg first and if that goes well, try 6.5 again, holding for 4-5 weeks before trying 6.0 again.
yes. I had the 5th jab and had a flare so upped from 2mg to 5 for a week. Thought no more if it. Had the 6th jab which was so painful (the injection itself). Few days after another flare . Have not really got over the jab , has left me with a near useless arm. But have been able to drop to 1.5 mg. Don’t know if hip pain is PMR. GP thinks I no longer have that 😂😂😂😂.
Thanks. Right now I am knocked out with fatigue again but have dropped to 9mg. I knew my pmr had reacted to the jabs and very nearly did not have the Oct one but too late now. You seem to be managing to drop ok. Good.
Ebiker, regarding Covid jabs and boosters, and the fallout from them for you. I wonder if it's worth continuing with the Covid jabs? From what you've said they seem to do you more harm than good.
The latest versions of Covid appear to be based on the Omicron variant, which is highly infectious but hardly ever fatal, from what I've read. So I wonder if you're doing more harm to yourself by continuing to take the boosters?
Surely the idea of taking any medicine is to prevent, to stabilise, or to cure a disease? In the case of the Covid boosters, they don't appear to prevent people getting it, just as they don't appear to prevent people who've got it from passing it on to others. Neither do they cure Covid, and as to whether they stabilise it, thereby hangs a very good question. It reminds me of the old joke about the young man who finds a drunk on the train one morning, holding tight to, and drinking from, his large bottle of whiskey.
The young man is intrigued as to why the drunk is so keen to keep drinking when he's obviously had more than enough. So he asks him,
"Why do you keep drinking? You've already had more than a skin full by the looks of you".
The drunk replied, "It keeps the pink elephants away!"
"But there are no pink elephants!" said the young man.
"See? I told you! The whiskey is working! they've all gone away!" replied the drunk.
The moral of the joke/story being that sometimes people can be frightened into behaving in a self destructive manner by a threat that doesn't actually exist.
An example of this from real life is that a good friend of mine ended up in ICU for over a week and nearly died after having his first jab, and his partner was also very ill after having her first jab as well. So I was surprised that they both then elected to have second jabs, although I'm not sure whether either of them have had any subsequent boosters.
However, the point is that my friend nearly died from having the jab, despite being relatively fit and healthy, and if he'd had Covid would most likely have suffered much less than he did from the jab. Yet he chose to repeat the action that nearly killed him the first time, rather than face a much less severe threat from the actual disease of Covid.
Sometimes....just sometimes, the threat of pain is worse than the reality of the pain itself!
It's hardly ever fatal because most people who get it have had vaccinations. Non-vaccinated patients can still become pretty sick, Although there isn't what is real herd immunity, a very high number of even non-vaccinated have had Covid at least once and have a degree of protection. And China now provides an example of what happens in a non-vaccinated population - with the major risk now being that this mass outbreak there could well result in new variants which are able to escape the vaccines.
I AM far from sure the extreme frequency of boosters the UK has indulged in has been a good idea. But I am sure that having the vaccines has reduced the risks greatly. There are no vaccines that provide 100% perfect protection, they were never expected to protect 100% from infection or transmission - that talk came from politicians and media who WANTED them to be like that but no scientists ever thought that it was possible. It is also impossible to say that Covid would have been safer than the jab - it may have been, but you can't be sure.
Yes, that is the dilemma. Common sense said that I should have the booster but whether it was the right decision or not I will never know!Started on 9mg today and virtually no stiffness but it is another day of fatigue. I could´t surface till after 12 noon but I had eaten breakfast. It puzzles me that I have this symptom worsening when I have been on higher pred. As you said earliier, probably was not a flare.
Vaccination isn’t medicine, it acts as stimulant to the immune system by fooling the immune system into responding to a foreign entity in the body as if it is an infection. There are several immunological process pathways the body utilizes to combat infection. Using nonvirulent viral proteins a vaccine causes an immunological response. Meaning, in the future, depending on any developed memory response, when the body detects the same or similar (via cross reactivity) viral protein sequence / configuration, its rate of immune responses are highly increased, so less time for the live virus to replicate and expand its viral load and cause damage while the body’s immune system ramps up.
The only time I’d consider not getting the booster is if my physician (preferably in consult with an Immunologist) told me not to because I was allergic to the adjunct and the side effect would be worse than ramification of contracting that variant of the virus. I’d rather feel like crap for 2-4 days than for 2-4+ weeks or longer and no one knows how each individual responds to Covid. I and my wife had it this past September, and any reasonable effort we can take to reduce its effect should we contract it is worthwhile.
While you focused side effects of these vaccines you failed to consider the other potential long-term damage this virus causes, and they’re still learning.
I disagree 180 percent with your suggestions in this area. In this one, my comment to the OP is discuss with your doctor, period!
My last Covid jab about 4 weeks ago appeared fine for the first 10 days. No reaction at all, not even a sore arm. But after the 10 days, I felt very unwell with such a bad headache I thought I might have to go to A & E. My BP at one point was 203/98. I actually packed a bag. Over the next couple of weeks my BP dropped day by day, and the headache disappeared after 3 days but I've been left feeling not quite right and I'm having difficulty in remembering things, particularly using the correct names for specific items. It's worrying. However, I didn't increase my pred (I've been on 7.5mg since October 2020) and have tried to work through the additional aches and pains. I hope this all passes for you and you're back to normal very soon. You'll get good advice from the others in this great support group......
Thanks. It seems that a lot of pmr sufferers have experienced problems after jabs. I guess these jabs do what they are supposed to do and inevitably affect the immune system.
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