Afternoon all. I’m suddenly sick, but not sure what’s causing it! Went down from 6mg (after a month) to 5mg every morning at 2-3am 4 days ago. On Tuesday I had to drive 150 miles, so upped it to 7mg the night before. Yesterday evening I felt worse than normal...deathly fatigue is normal for me at 4pm. I’d baked a Christmas cake, made supper, emptied a large supermarket delivery, crocheted, done some dusting, nothing much else. Quiet day for me. Went to bed at 8.30 & started getting bouts of ‘the whirling pits’ like when you’ve had too much to drink & room revolves! Like being on the worst roller coaster for far too long. Nausea set in immediately, nearly vomited (I do that very rarely). Second bout was worse, thought I was going to pass out. Had 3 bouts before steroid intake, one bout after. Hubby got up & found anti vomit tablets for me. Only other thing was like a shivery sensation over my body. I had electric blanket on low as usual so wasn’t cold. Stayed in bed, but now crawled down. Have a headache, but it’s not dreadful. Do not want a repeat episode! Other issues, I have badly pulled back muscle at the moment, walk slowly, shout out as pain severe, I was told I have Sjogrens Syndrome one week ago. I do occasionally get ‘proper’ migraines, but this doesn’t fit well. I did take an extra 1mg of Pred about 10am to see if it helped. Something helped, as I’ve made it downstairs! Can’t do anything, though. But think 5mg too high to get adrenal issues? Been shielded since 1 Feb. Diagnosed with PMR a year ago. Also have fibromyalgia, benign spinal tumour, crush injuries from car crash lots of years ago. If I don’t reply to you quickly, it will be because I’ve gone back to bed, but will be reading it all. I promise. Thanks in advance!
5mg too high for adrenal problems, please? - PMRGCAuk
That sounds like a poor deal. Sorry you are feeling so rough. Can not advise as not been that low, but others will be along to help.
"I’d baked a Christmas cake, made supper, emptied a large supermarket delivery, crocheted, done some dusting, nothing much else. Quiet day for me."I'm exhausted just thinking about it!!!!
No, 5mg is not too high to get adrenal issues - you absorb between 50 and 90% of the oral dose. If you are a 50% person it is only 2.5mg compared to 4.5mg for a 90%. BIG difference.
Going from 6 to 5 is a big step down - almost double the 10% that is recommended. By now you should be looking at 1/2mg. You may have been just on the cusp at 6mg, 50% or 3mg is enough for you, just. And if you really want to do 1mg at a time and are not using a slowed taper - then do it every 2 months rather every month. It isn;t a race, to be down to this level after a year, with all you have going on, is fast.
Thanks. I thought you’d say I do too much, but that really was a quiet day for me! I’m still like a bull in a china shop, even with PMR. I tried to search for adrenal posts before posting but there was so much. I do remember now, the dr saying I may have to halve tablets & I do have a splitter. After talking monthly for ten months he’s leaving it to me, he’s not pushing speed, but did say it would be good to be off Pred within 18 months. I have made a telephone appointment to talk to him next Tuesday (we haven’t had time to talk about the Sjogrens yet, either). I will 6 & 5bon alternate days for a week, & also plan not to go any lower until the new year. I’m a dreadfully impatient patient, thanks for your patience & advice, I appreciate it. I hadn’t thought about the different rates of absorption at all. Sometimes I’ve only gone down 1mg every six weeks as I’ve had pains recurring in shoulders, but this time I didn’t get them, & thought all was well. S x
IF it really is PMR - you won't be off pred in 18 months UNLESS the underlying autoimmune disorder that causes the symptoms has burned out and gone into remission. Otherwise, you may get to 2 or even 1mg and be fine - but zero isn't. Even a very low level of activity that isn't being cleaned out by pred every day will build up until the inflammation is as bad as before - the dripping tap that eventually fills the bucket!
The doctor said I had a classic case of PMR, results, examination, symptoms & reaction to initial Pred. Sadly,mi now also have classic case if Sjogrens as well, but that may be due to my overdoing it. I guess it’s because I ploughed through ten years of fibromyalgia by ignoring it, putting up with the pain that I thought I could treat these two the sane. Hands up, I’m wrong! But yes, the doctors appear to think you can get right off Pred within 18 months, I’ve read plenty of threads on that subject. I think the lowest I’m aiming for is 2mg, but now depends on the addition of Sjogrens. Who knows, I may have to start behaving better!! Thanks, S x
Interesting, but could you have adrenal problems without experiencing PMR pains as well?
Oh yes - your body may need 4mg pred to replace adrenal function but you only need 1mg for the PMR. Then you could have adrenal wobbles without PMR pain.
Thank you for your reply, the reason I ask is that last Friday I had exactly the same symptoms as the lady, lasted one day after taking anti sickness tabs. I was on 2mg and getting mild pains. Put pred up to 3 mg and no more dizzy and sick problems. This morning at about 10 am started to feel dizzy and sick. Took 5 mg stemetil and recovered about hour later. But symptoms today continue. Just feel completely wiped out now. No doctor appointments so can't discuss with the. Got any ideas apart from vertigo which I don't think it is?
It could be an infection or other unwellness - but that too requires adrenal support and it the reason we sometimes talk about Sick Day Rules. If your GP won't provide emergency care appointments (they should be) then your other option is 111 and ask for advice from a doctor, especially if you would normally seek medical advice because you feel so bad.
Thank you, I said to my wife that I will see how I am in the morning and ring surgery again if I still the same. If I feel bad in the night I will ring 111. Thank again.
But no mention of you have PMR pains at the moment, like shoulder pains etc ?
Sorry you’ve had similar trouble. No, I have not had the normal shoulder pains I get each time I reduce, that's what made me post! I normally put up with the shoulder pains & other symptoms for 2-3 days when I reduce, but then they disappear again as my body gets used to the reduction. I’ve never had a huge flare up, luckily. This is the first time I’ve had these issues, but they are horrible! Hope you get the help you need, would be interested to know the result, if it’s PMR related or something else! Thanks, S x
Thank you, same here, no real PMR symptoms. This is the second spate of the nausea and sickness. I am feeling better this evening and I will see how I am in the night and morning.Thanks for replying, how do you feel now?
Up & down in phases! Managed to get downstairs, & felt better after taking anti sickness & an extra 1mg of Pred. However, five hours later I felt bad again, but not as bad as last night. I took another 1mg of Pred, &, after a while, felt a bit more human again. I’m going to take a little more Pred each night until my doctors appointment on Tuesday, & see what difference, if any, it makes. Glad you are feeling better this evening, hope it continues. S x
Thanks, I hope you continue to improve. I will seek help with my dilemma as well. Take care.
Hi PMRpro. Just adding my 2 cents. I’m on 7 1/2. I went down to six a while ago and got pretty sick. My endocrinologist had me go back to 10 for a while and I’ve tapered. I think everyone is different with the adrenals and I think I will stay at seven if I can. I’m not sure it matters anymore it’s been 11 years for me between the PMRGCA adrenal insufficiency and a bunch of surgeries so what’s a few milligrams of prednisone. I’m back in Florida and it’s really cold here. Still on Actemra as well if not The ESR and CRP go nuts .
Thanks very much, I wrongly thought you had to be on as little as 2-3 mg to get adrenal issues, so its all been very helpful. We usually go to southern Florida for 3 weeks each January (rent a house in Cape Coral on the waterways) which helps a lot. Surprised to hear your temps are low, but we won’t be there, sadly, because of covid. Take care,its bad out there, too, I read. S x
I am on 5mg at the moment, up from 3 due to a flair. I tapered slowly by 0.5mg and still had what I believe was Adrenal pain for a short time from 5 to 4.5 and then to 4mg . The pain started within 24 - 48 hours, different from flair pain which gradually built up after a week or so on my way down to 3mg. With the aches of adrenal pain I also minimal dizzy feeling and a bit of nausea and my husband said it was like living with a crocodile - he never knew when I was going to snap! Could you possibly have picked up a tummy bug or perhaps a virus which has affected your middle ear?
I couldn't manage your level of activity during a taper, or probably at any other time without paying for it the next day! It's taken me a long time to learn to pace myself regarding exercise and activity but life is much better because I don't expect so much of myself now.
I don't feel qualified to give you any proper advice regarding medication but hope you feel better soon.
Thanks very much. We don’t go anywhere to catch anything right now, been shielding since 1 Feb. The long drive was to meet our relatives half way with Christmas present swap, & we chatted, with masks on, in car park at a good distance for 45 mins then came home. Otherwise we hike in the forest! No visitors all incoming ’stuff’ is quarantined for minimum 3 days...their presents went straight into huge bin liners & are in our motorhome! Good thought, though, thanks, could be vertigo or ear trouble! I always overdo my activity, nearly every day,its a failing, but I have fun, too! I need to pace & taper, but interesting that you had minor dizziness etc. My husband laughed out loud at the crocodile bit, so guess I’m like that, too, LOL! S x
Your adaptations sound very much like ours,except I haven't shielded, just strict social distancing. We also have a motorhome and it's been a godsend as, when we are able, we go off for the day and have our own loo and catering facilities. I can also put my feet up if I feel like it whilst my husband goes off for a second walk.
Pleased I made your husband laugh, they have a bit to put up with too when we have off days. And now you've reminded me that I've got a Christmas cake to make - perhaps tomorrow!!
My husband has asthma & COPD, & because I have other things going on we were shielded early by my doctor (but the term shielded hasn’t been invented then)! When we were able to go away fir four weekday nights in August most camp sites were fully booked. We live in the New Forest so we just went to the southern half & Explorer there, came home for the weekend as no spaces & too many people, then had a mid week break the next week! Yes, husbands & wives are affected, too, on a regular basis & I guess it’s for him, too, that I make an effort some days! Happy cake baking...S x
If all you did yesterday was a normal day for you I dread to ask what a busy day would involve. With all that plus your long drive your body could be rebelling and telling you enough is enough. I hope that after a proper rest you'll feel a lot better.I have hesitated to say this and I don't want to cause you more concern but your mention of chills, vomiting and headaches are listed as Covid symptoms. I hope I'm wrong-probably am- but if you continue to feel so poorly or worsen medical advice is needed.
Please see my reply above re our shielding & precautions I’m hoping it’s not covid, but thanks for mentioning it, I appreciate your help, & yes, that was a quiet day for me! I would usually do 20 minutes on the treadmill, but my back pain is too acute right now! S x
I first got adrenal problems going from 5 to 4.5 and then 4. Took me a while to realise what was going on but dizziness, vertigo, low BP on standing, struggling to get warm, salt cravings were all signals I got that I knew nothing about as doctors hadn't warned me. Fatigue way beyond any PMR fatigue I'd ever experienced.
Hello! Yes, you described it very well indeed! In fact the first & only food i have fancied today is salt & pepper biscuits with salty butter! I can usually plough on with life through any of it, but not this. Made it downstairs, watched a Christmas movie, but couldn’t even do my beloved crochet (learning beginner!) the vertigo is what makes me feel sick, I’m finding. I didn’t know any of this, either, but maybe my doctor didn’t expect me to get them so early, perhaps. Will discuss with him on Tuesday, & thanks, your post made me feel better...and hopeful! Can I ask what you did? Increase the Pred? Rest more? Take any other meds? If you have a moment, do let me know! Thanks, S x
Bit of a long story ... ended up having synacthen tests and being on hydrocortisone as was determined to get off Pred, only to end up back on it because the PMR hadn't gone away.
What rotten luck. Yes, I’m determined, too, I put on so much weight years ago taking them, I tried to refuse at the beginning! But I accepted they are a necessity with PMR. I know it’s not a race & will try & pace my race at a slower rate. Thanks for your reply, S x
I'm in the midst of a big relapse again at the moment and on high steroids, but really keeping carbs low and absolutely NO sugar is keeping the weight off, though the face has still puffed up a bit moon like again. I wish I'd known about low carbs at the beginning as I put on over 2 stone.
I’m really sorry to hear that, you’ve had more than your fair share of trouble with this! I have the moon face a bit, but was ‘lucky’ & had diabetes diagnosed within 4 weeks of getting PMR so lost three quarters of a stone ASAP, reversed the diabetes, & then my face didn’t swell further! Sadly, the weight is back on, but the blood sugars stayed OK! Good luck, hope you will be feeling better soon, S x
I can't offer any medical advice beyond what you have already been told, but, my god, you are amazing! I remain very active, but I only have PMR, you have a lot more do deal with and your progress is impressive. I hope this problem with resolve soon and you feel well in time to enjoy Christmas. I am yet to bake a Christmas cake, but my inspiration is low as no one in my house will be interested in eating it and we will have no visitors.
You’re very kind, thanks so much! I also get repeated chest infections & spend end November to March in virtual isolation (with my husband) for past 4 years (following two ruined Christmases when I was too sick to enjoy anything, & several consultants, 2 hospitals). We usually escape to the sun in January for 3 weeks, but can’t do that this time! But life is for living & we are only here once & there’s so much I want to do...we travel a lot overseas, have a Motorhome & hike in the forest where we live. I get very very tired & often it’s a fight to continue, may be partly why I’ve ended up sick today. We found our first Christmas without friends & family, no pubs, restaurants, visitors very different! But now we have a new routine, new things to do on Christmas Day & it’s great fun...you have to make your own fun as there aren’t others around you! Good luck, keep optimistic, S x
I would get a Covid test too/ nausea and shivers
My gut feeling is that you might have had high blood pressure. Also do you take food when taking your Pred? I’ve tried taking an extra 1mg on “big days” but it’s not recommended. I’d see my Doc if I had the whirling pits with no alcohol... first and last it’s all concerning isn’t it?Go slow for now, you’re an achiever but it will have to wait. Take care o thee!
Thanks! We have a home blood pressure machine & I was asked to monitor it last week on 3 days as it was my annual checkup time, then feed them the results. I appreciate it may have shot up this week, though, & will take it today & compare it (last weeks were spot on my norm of 130/80 or within two, up or down! I’m taking it quietly, very quietly. Good thought, appreciate it. S x
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