Reduction complete.

[tiggersue]

Hello everyone, well I have completed my reduction regime , finished 11 days ago. I finished after a week of 1 mg but I am having terrible stomach problems/gerd, stomach flutters that lead to missed heartbeats and a cough. Do you think this could be related to withdrawal? Do you have withdrawal from 1 mg? I have started back on Omeprazole twice a day but only 2 days in so not really long enough to have worked yet. I’m at a complete loss ???

[DorsetLady PMRGCAuk volunteer]

Could be adrenal still stuttering -although the most common symptom for most is fatigue … gastrointestinal problems are a symptom of adrenal insufficiency as well…

But you do need to get it checked out - a cough and missed heartbeats could be anything really..

..and yes you can get withdrawal symptoms from 1mg …. Looks as if you’ve been on Pred for a long time, so a really slow last taper would have been in order.

[tiggersue in reply to DorsetLady]

Thank you , yes been on it nearly 3 years. I was so excited to finally be off of it then all this kicked in and feel pretty yuck.

[DorsetLady PMRGCAuk volunteer in reply to tiggersue]

you might going back to 1mg sorts it out….and then a slow taper to get off - so1mg to 0.5mg then to seton-over a number of weeks….

But still need get heart flutters and cough looked at I think, just to be sure.

[tiggersue in reply to DorsetLady]

Thank you, the missed beats seem linked to my stomach, when I get the weird flutter/spasm if I feel my pulse I can feel a missed beat 🤷‍♀️.

[Seacat30 in reply to tiggersue]

Isn't coughing sometimes caused by GERD?

[tiggersue in reply to Seacat30]

Yes it can be and I think my cough is exactly that. Also the weird stomach things. It’s so difficult when you have chronic conditions, you just don’t know if it’s that or something else 🙁.

[Broseley in reply to tiggersue]

This is a problem I had before PMR. It's to do with the vagus nerve which connects to the digestive system and the heart. I found taking ginger capsules helped enormously after every meal, along with magnesium daily. After 2 weeks it stopped.

[tiggersue in reply to Broseley]

Thank you so much for replying, no one , especially the Doctors, understand what I am describing !! I’ve ended up in A&E several times but of course it has always passed by the time I get there and ECG’s and tests have always been fine. Someone said that it is harmless but nonetheless not very nice. I’ll try the ginger. I’ve had it on and off for years but always when GERD is bad but this time around it has been particularly bad and I assume because of the Prednisolone ending?

[tiggersue in reply to Broseley]

Is it that the ginger and magnesium calm the Vagus nerve? I take a multivitamin and mineral, would that be enough magnesium? Thank you again.

[Broseley in reply to tiggersue]

I think so, or the opposite - stimulate it so it calms things down. I can't remember now but I too had tried everything and after a lot of research found an article which describes it all in more detail. I'll see if I can find it, I saved it into favourites but it may take some time...

[Broseley in reply to Broseley]

Found it! youmemindbody.com/disease-i...

[tiggersue in reply to Broseley]

You’re a star, thank you so much !! I can’t tell you how comforting it is to know someone else that experiences the same issue . I will make a soothing cuppa and read it 😊.

[Broseley in reply to tiggersue]

It's not a scientific paper, but it has references, and it worked for me! Hope it does for you too. It also suggests probiotics, make sure you get the ones with several million bacteria in otherwise they're useless (according to Michael Mosley in his site cleverguts.com - well worth a look).

[Karenjaninaz in reply to tiggersue]

Prednisone depletes magnesium. I found talking magnesium glycinate or magnesium citrate relieved palpitations. However it looks like adrenals when one feels so topsy turvy.

[tiggersue in reply to Karenjaninaz]

Thank you 😊

[tiggersue in reply to DorsetLady]

Not sure why everything is underlined 😂.

[DorsetLady PMRGCAuk volunteer in reply to tiggersue]

you must have tapped Underline without realising…no problems. happens to the best of us at times…😀

[tiggersue in reply to DorsetLady]

🤦‍♀️

[Seacat30]

I am on 1mg and my digestion has become dodgy. No heart flutters or cough though (yet)

[tiggersue in reply to Seacat30]

Seems as if stomach problems are part of reduction 🙁.

[Seacat30 in reply to tiggersue]

Mine aren't awful but I think food is travelling faster through my system than it did. Some of that could, of course, be due to less caution in my eating habits.

[tiggersue in reply to Seacat30]

Thank you 😊

[SnazzyD]

Did you just stop the Omeprazole when your reduction finished?

[tiggersue in reply to SnazzyD]

I wasn’t always on it while on Prednisolone, I had to come off because of the side effects and hoping I won’t have to be on it for too long 🤞🏻.

[SnazzyD in reply to tiggersue]

Omeprazole needs to be stopped slowly because one can get rebound acid production. Your risk of this will depend how long you were on it (Omeprazole) before you stopped. I also found that when my stomach acid got out of control (other reasons to yours) it took a couple of weeks to get under control.

[tiggersue in reply to SnazzyD]

Yes I tapered off of it when I was on it before and didn’t get the rebound acid. I’m hoping I won’t be on it long this time around.

[whitefishbay]

It took me a long time to reduce from 1 mg to 1/4 mg and I still take it once every week (1/4 mg.). The last bit is a slow road I found.

[tiggersue in reply to whitefishbay]

How did you get such low doses, by splitting your tablets? I didn’t think we could do that and that’s why I went from 1mg to nothing.

[whitefishbay in reply to tiggersue]

I just cut with a knife. They are not perfect. Slowly slowly. I did not want a flare so I took it so slowly. Probably too slowly. Best of luck.

[tiggersue in reply to whitefishbay]

Thank you 😊

[DorsetLady PMRGCAuk volunteer in reply to tiggersue]

So long as they are plain white ones and not the coated ones it’s fine. That’s why many tablets have a indented line on them…

[tiggersue in reply to DorsetLady]

Thank you 😊

[SnazzyD in reply to tiggersue]

using a cheap pill cutter bought online.

[tiggersue in reply to SnazzyD]

I did get one but because I thought we couldn’t cut them never used it but a useful addition to the pill box. Thank you 😊

[PMRpro Ambassador in reply to tiggersue]

If they are plain white pred they can be cut. And the slowed tapers in the FAQs also allow a slower and extended reduction at the end,

[tiggersue in reply to PMRpro]

Thank you 😊

[MiniSpec in reply to tiggersue]

I've bought a pill cutter from my local chemist. I think it cost around £4. It's great because you can cut a tablet in half, then cut each half in half as well, while not losing any of the crumbs. You can get them on line as well for around the same price or even lower. I've seen them on Fleabay for around £2.80 or so.

I don't know if I can attach pictures to this answer, but if I can, then please see the attached picture of one so that you can understand how it works.

The tapered pill cutting area is in the base and the cutting blade is in the cover.

[tiggersue in reply to MiniSpec]

Thank you so much for taking the time to show me 😊.

[SnazzyD in reply to whitefishbay]

I took a year to get from 1mg to zero.

[whitefishbay in reply to SnazzyD]

That sounds right.

[Blossom20 in reply to SnazzyD]

Gosh! No wonder it didn't work when I tried to do it in a month!

[DorsetLady PMRGCAuk volunteer in reply to Blossom20]

No wonder indeed 😳 🤣😂

[SnazzyD in reply to Blossom20]

Yes, so near yet sooo far. I dare say some of it was psychological but a month would have been way too fast. My adrenals were very on and off before they sorted themselves out.

[Blossom20 in reply to SnazzyD]

I think my adrenals are normal - or so it feels. How would I know? I feel normal, not emotionally wierd like I used to on higher doses. The only reason I can't go lower is because of the pains in my neck and shoulders. In fact I keep having to go up to 3 every so often to clear it out. I should probably be on 2 I suppose. But I keep reading about the rheumies forcing people off because theyre so bad- so I'm thinking I must get off!

So near yet so far as you say!

[PMRpro Ambassador in reply to Blossom20]

If it is still there and you stop the pred - you run the risk of going back to the start ...

[tiggersue in reply to PMRpro]

My neck, shoulders and upper arms are agony tonight but I’m trying to just push through it 🙁 I really don’t want to restart the Prednisolone when I’ve been off it now for a couple of weeks.

[PMRpro Ambassador in reply to tiggersue]

If it is still there and creating even a small amount of inflammation that is not being dealt with every day it will build up until you are back where you started. The longer you leave it, the higher the dose of pred you will need to sort it out. If you jump back in quickly you may only need 1 or 2mg to sort things out. Leave it and you might be back to 15, Your choice

[DorsetLady PMRGCAuk volunteer in reply to tiggersue]

Agree with PMRpro- a small dose now may sort it out, leave it and could be trouble abrewing…… a stitch in time and all that!

[SnazzyD in reply to Blossom20]

If your adrenals are working you feel ok. If they are not you feel tired, emotional, overwhelmed, vaguely achey and weak. Well, that’s how I felt.

Pain in specific places needs more thought. Either you are over doing it or you need more Pred for the current level of autoimmune activity. Popping up and down frequently may be more hindrance than help. Getting off Pred before your condition has burnt itself out is not likely to end well either.

[Blossom20 in reply to SnazzyD]

Yes you're right...I do overdo things, always have, trying to keep the muscles from wasting away etc. And maybe the auto immune aspect goes up and down too - it feels like its still there that's for sure. I hope 1mg will be enough to keep it in control. Who knows?

[SnazzyD in reply to Blossom20]

It’s not just autoimmune but also the deconditioning and the muscle weakening effect of Pred over the time. Your muscles are more prone to injury. You need to build up slowly and lower the bar of expectation but keep moving

[Blossom20 in reply to SnazzyD]

'The muscles are more prone to injury' - I didn't think of that - so that's why they take so long to recover after overdoing something....

[SnazzyD in reply to Blossom20]

yup. I didn’t have PMR, just GCA and I found even carrying a light bag around town or cleaning a few windows was enough to feel pretty uncomfortable, usually a couple of days later. There is no forcing it either.

[papadapadoo]

When I had GERD I began to make kefir and drink it daily. The GERD disappeared petty quickly and my overall well-being improved. It is very easy and cheap to make your own kefir. There's no better source of probiotics.

[tiggersue in reply to papadapadoo]

Thank you , I’ll give it a try !!

[SnazzyD in reply to papadapadoo]

Is there a non dairy version?

[Blossom20 in reply to SnazzyD]

Yes, I believe so, but don't understand how it works or what it's made of

[PMRpro Ambassador in reply to SnazzyD]

culturesforhealth.com/blogs...

Just have to feed the culture with other stuff like sugar or fruit juice

[papadapadoo in reply to SnazzyD]

Yes, there is water kefir, although I have not made it. If you are simply lactose intolerant, kefir turns lactose into lactase and is fine for lactose-intolerant people.

[Exflex]

I’m currently on 1.75mg and from Monday I will be slowly tapering to 1.5mg over 5 weeks. Lower, slower etc… I would not step from 1mg to 0.

[tiggersue in reply to Exflex]

I am two weeks off of it now and am determined to stay off it. I’m having a lot of muscular pain and tummy problems but I’m going to grin and bear it.

[HeronNS]

You really must get that heart thing properly investigated. Apparently a cough can be a sign of congestion caused by a heart not working properly. Always best to rule out problems rather than suffer until they get worse. Hopefully it's nothing serious. Do let us know how you get on.

[tiggersue in reply to HeronNS]

Thank you, I have had tests done, heart scan and worn a 5 day tracing monitor twice and all was well. Only happens when my stomach plays up.

[HeronNS in reply to tiggersue]

Well, that's good.