Tapering down off Prednisolone: Hi everyone, not... - PMRGCAuk

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Tapering down off Prednisolone

Dappa
Dappa

Hi everyone, not posted in awhile. Hope everyone is doing okay. I'm at present on 4mgs tapering down and eventually hoping to come off. Had my adrenal glands checked and they are working normally. which was great news. Just wondering with this tapering if anyone else feels so fatigued and depressed. I can change with how I am not just daily but hourly. Some days feel so drained. This morning got up feeling okay by two hours of being up had diarrhoea twice, had stomach gurgling and constant wind. Go from being happy to crying over nothing really. This is getting so hard now. I knew it wouldn't be easy though tapering down.

34 Replies
DorsetLady
DorsetLadyPMRGCAuk volunteer

“Had my adrenal glands checked and they are working normally. which was great news.”

They might be capable of working normally, but with fatigue and mood swings I would say they aren’t there yet! It can take anything up to a year for them to be fully functioning.

Diarrhoea etc I would say is some else altogether unrelated to

PMR or Adrenals - but nevertheless unpleasant. Give yourself some TLC for that plus plenty of liquids - sports drinks are good if you can’t face anything else.

Ease off on the tapering side of things for a while - certainly until stomach has settled - and then as slowly as you can. Slowly helps your PMR and your Adrenals - just a matter of time and patience (yours!)

Dappa
Dappa in reply to DorsetLady

Thanks for the reply DorsetLady.

Yeah I thought it would take awhile for my adrenal glands to be back to normal. But was told they were working normally now, weeks after I had the test.

Anyway I know i'll get there in the end haha. Honestly just getting up some mornings feels stressful to me. May sound silly that but I constantly feel anxious and I think that's why my stomach is always off colour.

I really don't some days have the energy or inclination to get dressed and go out. I fluctuate so much from being full of energy one day to having none the day after.

Hope you are well. Take care. X

Hidden
Hidden in reply to Dappa

They don't explain that they mean they can work and should kick in. Your body just keeps asking and they are saying not yet, not yet.... Hence fatigue etc. Fingers crossed you experience them starting to help soon.

Dappa
Dappa in reply to Hidden

Thank You Scoopitup for your reply.

Yes fingers crossed.

Hope you are doing okay. X

Hidden
Hidden in reply to Dappa

Yes... Thanks.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Dappa

If it’s the test we talk about on here - it only shows they are CAPABLE of working - not that they actually ARE.

As SnazzyD asks - how are you tapering - that may be part of the problem. Plus you’ve come down very quickly from your original dose - that may also be a factor. Plus stress!!

Give us a bit more info - and maybe we can suggest a better way forward.

Dappa
Dappa in reply to DorsetLady

The test was the Synacthen test. You know they took a few blood tests, injected me with some sort of dye stuff to help stimulate the adrenal glands. Think it all took about 2and half hours.

About two weeks later contacted GPs and they read on the computer that my adrenal glands were working normally.

Been tapering eg 5 to 4 alternative days. After two weeks then going on lower dose for 6 to 8 weeks.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Dappa

My glands took about 8-9 months to really get going whilst reducing from 6mg down to 3mg - very slowly, very small steps.

Can you cut your tablets, very often a 0.5mg taper is better at such low doses - and maybe use a slightly different taper - this shows a few variances -

healthunlocked.com/pmrgcauk...

as we're all saying, slower is better!

Dappa
Dappa in reply to DorsetLady

Thanks. I will look at that and sort a different taper. X

Hidden
Hidden in reply to Dappa

I personally don't like the alternate day strategy. It asks a bit much of the body. Perhaps a dsns approach might ease your symptoms.

Dappa
Dappa in reply to Hidden

Could you remind me what the dsns approach is please. Ive heard of it but can't think at min what you do. Thanks X

Hidden
Hidden in reply to Dappa

It's the dead slow nearly stop taper. Here's the post pmrpro did several years ago. Hopefully it will explain better than I can!

healthunlocked.com/pmrgcauk...

This sounds just like adrenal problems to me. So, the test just simulates the hormone being squirted out by the pituitary gland in the brain to wake up the adrenal glands that sit on top of your kidneys. The reaction of the adrenal gland is then measured. Now, although the adrenal reacted then it doesn’t mean it’ll react every time or even whether the pituitary gland will shout in the first place. Often it appears to be the case that sometimes it does and sometimes it doesn’t until finally it becomes more reliable. I went through at least year of the symptoms you describe while I went down from 4mg and gradually it improved throughout. I thought I was fine at 3mg but then went through it all again when dropping from 1.5mg to 1mg. I’m on 0.25mg now but sometimes something will just be too much such as walking about in a lot of pain (Achilles) for 2 hours in the cold. I went into a mild adrenal crisis near the end and had to wait it out while an extra 1mg did it’s work. So, in short, it’s not as straightforward as all that, but then it is ever?

One more question, what size are your drops? I know the numbers are small now, but they still do make a big difference.

Dappa
Dappa in reply to SnazzyD

Thank you SnazzyD for your reply,

I am tapering down very slowly. I do at least 6 to 8 weeks on the dosage and then taper down from for example 5mgs I would take 5 one day then 4 the day after and so on for about 2 weeks then go to the 4mgs for about six weeks.

It's not as straightforward as it appears is it though. It's all the symptoms that comes with it. Think the worst thing for me is not knowing how i'll be from one day to the next. But I keep thinking a lot of my problems with this is depression and it's making me more tired. I seem to brighten up at night.

I will be okay as soon as I get off this stuff haha.

Hope you are well and doing okay. Take care. X

SnazzyD
SnazzyD in reply to Dappa

Yup, the unpredictability of it is most disruptive; not knowing from one minute to the next whether I was going to be weak and weepy or not. I found myself unable to get up in the mornings and going back to needing a solid 2 hour sleep in the afternoon again. I’m pretty sure I wasn’t depressed. Your taper would have slayed me. I dropped 0.5mg every 6-8 weeks, then 2 at the new dose, but that became about 12 weeks from 3mg. I hasten to add I had no disease symptoms during this time.

Dappa
Dappa in reply to SnazzyD

I am pleased you had no symptoms on that tapering. I have been okay like I say some days I can do anything and others just feel worn out. Will try another taper. Thanks for your help. X

SnazzyD
SnazzyD in reply to Dappa

It does seem to be real trial and error to find your own rate of decrease that suits. It doesn’t help that the expectation of low doses is skipping with joy through the low Pred meadows. I was most miffed after getting down from the mountains of high dose to find this. It does get better. Good luck.

PMRpro
PMRproAmbassador

"Had my adrenal glands checked and they are working normally. "

If it was a synacthen test then it showed only that they are CAPABLE of working normally - and that isn't the same thing at all. A lot of other factors are involved besides whether kicking the adrenals makes them react.

pituitary.org/knowledge-bas...

says

"The symptoms of adrenal insufficiency usually begin gradually. Chronic, worsening fatigue and muscle weakness, loss of appetite, and weight loss are characteristic of the disease. Nausea, vomiting, and diarrhea occur in about 50 percent of cases. Blood pressure is low and falls further when standing, causing dizziness or fainting."

Were you at 5mg when you had the test? Did you feel better? One very good PMR doctor likes to keep his patients at 5mg for up to 9 months - because he finds it often makes the rest of the journey easier.

Dappa
Dappa in reply to PMRpro

Yes I felt okay at 5mgs and was at that the day of the test.

I can be okay some days at 4 and other days very down and cannot do anything then. I have no muscle weakness in fact I don't ache or have pain anywhere. I have a good appetite . But suddenly particularly at night I can just feel nauseous. But am not sick.

The diarrhoea comes on me sometimes after I have eaten. Have wondered about IBS.

Try not to wonder too much haha.

The PMR Doctor knows what he is talking about and knows the drug very well.

Would be helpful at times if a GP knew something about Prednisolone, X

PMRpro
PMRproAmbassador in reply to Dappa

If it were me I would go back to 5mg and then use one of the slow taper approaches to go to 4.5mg. This isn't a race and you are at a pretty low dose already. As you reduce the pred dose, your body will produce cortisol to top it up to the level the body needs to function which is usually taken as the equivalent of 7mg pred. It will work but it will take time - even after stopping pred altogether it is felt to take a year to be back to normal.

Dappa
Dappa in reply to PMRpro

I will do that PMRpro. Thank you very much for your input.

After a year on Prednisone for PMR, I was told to stop taking Prednisone on Feb 1. I stopped and worried but here is my experience so far. Today is the 24th day off the drug. I am feeling well. The first two weeks there were a few twinges of pain, fatigue, too. I just move ahead with limited chores, lots of rest and paced my effort as recommended on this site.

Yesterday,for example: Gassed my car, ran through the car wash, shopped at a small store for a few items, my son, Mike stopped in for coffee and a visit. That was enough for the day.....I rested most of the day, after. I had the best night of sleep since this started. I feel great today. Plan for the day is to get out for a walk in the sun along Lake Michigan. May do a bit of laundry. Nothing major. I still walk funny but I think it is improving. I am, hopefully, moving slowly ahead..

CathyM64
CathyM64 in reply to Gary1310

What a lovely encouraging post. Really glad your PMR journeys gone well so far and you're feeling better .

Gary1310
Gary1310 in reply to CathyM64

Thank you

Dappa
Dappa in reply to Gary1310

Thanks for your reply Gary1310.

You are doing extremely well. I'm very pleased for you.

Could I ask you what mg of prednisolone you went from to taking nothing?

Take care. X

Started on 20mg. In Jan.2019. Then tapered to 17.5 2 months, then 12.....then 1 mg per month till in January2010 I was down to 1 mg. Feb 1, I stopped.

Dappa
Dappa in reply to Gary1310

Thanks for that. You have done really well. All the best. X

I have diverticular disease - pockets in the intestine that can become inflamed/infected and lead to diverticulitis with unpleasant diarrhoea and vomiting. I am very careful with hydration and if I have the symptoms you describe I give my system a rest with a low fibre diet. This means white, bread, white rice (I know - felt so weird!) even the dreaded cornflakes. Go easy on fruit - bananas , blueberries and kiwi good. Apple ok but peel and core it. Avoid salads for a couple of days or so and go for small portions of vegetables like spinach, not cabbage, onion, garlic or spices. Go easy on caffeine, tea, coffee and chocolate. You may find this link helpful. Adapt to what you want and how your system responds. I do find this works, and quite quickly. Good luck! ibsdiets.org/fodmap-diet/fo...

Hidden
Hidden in reply to Thelmarina

Isn't it funny.... I had/have inflammed pockets.... The diet felt awful... Beige beige and more beige.

Thelmarina
Thelmarina in reply to Hidden

I know - but I find it works at sensitive times. Plus I am having smaller portions of the salads I love, which helps! X

Hidden
Hidden in reply to Thelmarina

Yes I agree. I have a combination of ibs and inflammation. Thought I was past the worst and ate seeds again and chewed well. Was like prickly glass! Salad my best friend at the moment and had a delicious concoction 2 nights ago. Stilton, plums, a couple of cherry toms, rocket salad, avocado and a balsamic and rapeseed dressing. Was so yummy.

Dappa
Dappa in reply to Thelmarina

Thank you Thelmarina. I will take it easy on what I eat. I have Coeliac disease anyway so am very careful..Hope you are well X

You may want to consider being tested for celiac disease. I had many of the same issues for years, even pre-PMR, including gurgling guts, nausea, chronic loose stools, etc. which doctors put down to IBS. I was tested and diagnosed celiac a couple of years ago.

Fatigue is one of the main symptoms of celiac disease.

Dappa
Dappa in reply to nuigini

Hi Nuigini,

I have Coeliac Disease. I have been gluten free for 17 years now. Yes I was going to and from Docs at the time, him telling me I have IBS. I did 5 years before I saw a marvellous Gastroenterologist and he sorted me. Thank you for your reply. Hope you are well. X

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