Update: I've changed the time of my Pred dose from 2 AM to bedtime (10:30ish). This seems to be working well; less fatigue, less sweats, less of all the debilitating symptoms, way more functionality throughout the day and the extreme hunger has subsided. This is probably because I sleep through them. That being said, I've now reduced the Pred from 60, 55, 50 to 45 mg (just started 45 on Monday). Last night I experienced the worse esophageal spasms yet. This began approx. an hour after taking the Pred (with a small bowl of rice crispies and milk). This is the first time for the cereal at bedtime.
These spasms began mid to right spine (thoracic) progressed around to my chest, up to jaws. Shoulders. Such pain is indescriable. I drank a full glass of water, which usually helps but didn't. My mid-back is still sore this morning. It's not angina, but it is scary. Eventually I went to sleep with the help of my anxiety meds (which I rarely have to take at bedtime).
Also, pain at lower esophageal sphincter (tender to the touch) at bottom of sternum and possibly upper sphincter where it feels as though food is stuck. I've been taking Rabeprozole for a few years for GERD, which has not been an issue for quite some time.
Do we think the taper to 45 mg is a bit much? I do know at higher doses we're supposed to be able to taper a little more quickly. I have not had the spasms since I began taking 60 mg. for possible GCA, but here we are. Rheumy (unreachable star that she is) still has not gotten in touch, nor do I have a GP.
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Missus835
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Rice crispies are carb without much fibre, not so good. Not so much heavy but might cause sugar spike. I also have occasional oesophagal spasms more akin to IBS that heartburn/reflux (which I dont have). Luckily I don't get them often. I am now on 4.45mg pred and take it at about 11am
In the end I had to have coated Pred but when I wasn’t I had to have a full meal or else my reflux was even more awful. A bowl of cereal or yoghurt didn’t cut it.
Yes. Unsure if I can get coated Pred here in Nova Scotia. Maybe it was the milk. I'll have to try eating something more substantial perhaps. Thanks SnazzyD.
I think your own assessment is right. I experienced oesophageal spasms on higher doses of Pred and they are agonising. My husband called an ambulance once and I was tested for a cardiac event. As my dose decreased the spasms reduced in intensity and frequency. I was able to calm them by keeping calm, sipping cool water and taking over the counter indigestion remedies. They were definitely linked to Prednisalone. I am awaiting an upper capsule Endoscopy currently even though my issues are in the lower abdomen.
With the complexities of your case, I think you ought to be under a gastroenterologist, you probably are. The tablets will be melting as you are in a prone position. I used to take mine at 2 am. I swapped to Entric coated but I may have just moved the problem to lower in the GI tract.
Yes you're right about the gastro specialist, but here in Nova Scotia the wait would be a good 6 months, IF I could even get a referral. Best bet here is to go to the ER (which should be a last resort). Last night I was definitely thinking of calling 911 (because one never knows). It was the worst so far. I slept, but not well and it's left me feeling almost bruised through the back this morning. For the first time in 4 days, I'm going for a morning nap. Thanks for your comments SJ and also about the empty capsules. Worth a try. ❤️
My hubby only waited six weeks after referral, & then a further six week for a full colonoscopy, in the UK, but it may depend of area. He was diagnosed with diverticular disease & they removed polyps. Mum had diverticulitis for 30 years, so know a bit about it, she had IBS, too. Just mentioning the wait bit as it’s interesting to hear good news as well as bad on the waiting times! S x
Oh, thats good news, I was worried then, as when I showed surprise at the short wait, she said it was something everybody should find in that field of medicine. He was lucky, as, having been given the 40 pages of printed diet to read, he was then referred back to GP to deal with the issues. Though he never received results of the biopsies, which disturbs me (colonoscopy in October). S x
Having read the advice above about the availability of Entric coated tablets in Canada, I know people on here put their tablets in empty capsules that you can buy on Amazon on line.
Might be worth asking your pharmacist first just in case they sell them. You may need to sit up for a while after taking your pred. Can you prop yourself up with pillows? That's what I thought of when you said you would be taking a large dose at night. I've been fine with plain yoghurt, but I've not taken a dose higher than 10 since starting doing this, and even that only for a few days.
Thanks. Yes I prop myself up as much as I can without chinking up my neck. Will be calling the pharmacist this afternoon to see about the pockets, or gel caps or whatever they may have.
Apparently they sell the empty gel caps at Walmart. Have not been able to find enteric coated pockets though, unless I buy the one's for pets who will not take their meds. LOL. 😆
That looks intriguing. I do currently use a travel pillow on top of a memory foam contour pillow (thin). Works quite well. I've bought so many pillows over the last two years (at first thinking that the pain caused from the wrong pillow). Sadly it was not.
That sounds familiar. Before diagnosis I was even looking to import at considerable expense a fleece mattress cover as it looked like here I could only get a single fleece and wasn't sure that would be enough. In the end I didn't need any size fleece, but I still have problems with my neck. Years ago my daughter and I went to Sears and each bought a pillow. After trying them out we actually ended up swapping because neither of us had bought the right kind and preferred the other's! Pillow buying must be one of the most difficult things if you have any kind of neck and/or shoulder issues!
I had purchased 2 lavender pillows and my grandkids now have them. They said it's the best sleep they ever had. If only. Then there was this thing that looked like a "cage" for want of a better description. Useless. Bought some really nice pillows and ended right back to using what I do at this time. They do let you try them at some stores, but you can't really get the full experience.
I think you'd probably use it for a half hour or hour or so after taking the pred, then pitching it and getting more horizontal for the rest of the night?
I did find some large capsules right here at home with some Turmeric in them, which I had not been using. Emptied a capsule out last night, filled it with my 9 tablets (5 mg). It holds exactly nine and it actually seems a lot easier on the stomach. No stomach ache through the night, at least I don't think so, because I slept through. Thanks SJ for all your helpful comments! The pharmacist didn't know what I was talking about when I asked about "empty capsules".
Was it the pharmacist or the counter assistant? Maybe they don't learn any of the skills of compounding pharmacy in the UK.
I'm sure they'd know here as I can get the pharmacist to order made-up doses using large dose tablets which are ground and filled into empty capsules for a small charge. Means you can get accurate strange doses instead of cutting tablets!
No....he's a pharmacist. There is only one there (Rachel) who gets it. She was responsible for me getting my initial bloodwork done back in 2021, which led to the PMR diagnosis.
I will ask to see if they will do the grinding and put in large dose capsules. I did not grind them last night but stuffed 9 pills into a large capsule (perfect fit) which I have at home from a Turmeric supplement I bought long time ago. Perhaps tonight I will grind them.
I have experienced many episodes of these spasms and they can be very worrying. Now if they start I take 1000mg paracetamol as advice by the hospital and they stop almost immediately. Also keep Ibuscopan in that’s a great help too. Hope this helps
hi, do you take omeprazole or anything similar to protect your stomach? The acid reflux I experienced felt like a heart attack sometimes and the doctor suggested omeprazole. I know it has its own hazardous side effects but I take it with kefir before I take my pred dose at 7am and vit D and K for my bone protection . Chrissie
Thanks. Yes I do. Rabeprazole 20 mg. It's been upped to 2X per day. The esophageal spasms are not solely acid reflux though they do feel like what I think a heart attack might feel like. Very scary. I also take 3000 of Vitamin D and you should be taking K2 (which helps with absorption of Vit. D - not K (which is a coagulant).
Everyone is unique of course. I take 10mg at 2am plus or minus an hour - thanks PMRpro. A few bites of cottage cheese which is low carb with milk instead of water to take the pills. Then I walk around for 20 minutes or so, read emails and this column. My theory is the cottage cheese and milk “coat” the pills and moving around while upright helps them dissolve faster. My dog loves to hang out with me which helps with my attitude! No problems going back to sleep but everyone is different. Been doing this over 2 years now with 10 mg plus or minus. Works for me.
That was a very scary thing for me. In my case it started at 60mg usually just lying in bed. It was like a shot to the chest. I thought heart attack but it only lasted a second. It got worse over time. When I was at 45 I remember one time I was going to keep a journal of when it happened. At the time I thought it was happening only right after eating or laying down. But I quickly gave up on keeping track. It seemed it was happening almost with every breath. My rheumatologist only shrugged. He seemed to think it was normal. I thing when I got down to 30 I stopped having it. I always took my pred first thing in the morning with milk. Still do at 2mg.
It is verrry scary and that last episode was the worse yet. They happen randomly and the length of time varies. Last one was about 2 hours. I was afraid to go to sleep actually. Rheumatologist is the unreachable star unfortunately but her attitude would be about the same no doubt. Hoping it settles down as dose is tapered.
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