Tapering trouble again, diarrhea diarrhoea

[Heidi_SF]

I just put most of the following in my profile but seems useful for this post:

PMR diagnosed Feb 2018. Started pred 15mg x 4 weeks, 12.5mg x 2 weeks, then 1mg taper, 10mg thru 5mg every 4 weeks. Had various aches and pains throughout, not just the typical PMR pain. Fatigue, back pain 2 days after 4.5mg reduction. Back to 5 for 2 weeks, then after 10 months down to 2 mg. Saw GP, she said PMR was gone and to taper off. No mention of potential adrenal issues. Dropped to 1.5mg. 2 days later fluish, sweating, anxiety and watery stool. After 10 days back up to 2mg. Doc orders stool tests, prescribes Cipro before results. Results negative. Long story short back up to 5mg, then 4.5mg. Things eventually settle down.

Then nearly 5 years of very slow taper, got to 1.25mg with 1mg every 3 days. Had lower leg pain and foot pain for months prior, but didn’t think it had much to do with taper. Also sleeping in unusually late for months but didn’t really feel fatigued otherwise. 5 weeks ago my calves felt so tight and heavy that I figured it was due to the last taper. Increased to 4mg. for 7 days, then down to 1.5mg. Third day at 1.5mg watery stool. Increased to 2mg. Tried Pepto, Imodium, Florastor probiotic. Some improvement. After 10 days on 2mg dropped back to 1.5mg for 5 days, then realized this wasn’t going away so up to 3.5mg for 7 days. Stool continues to be watery, sometimes with formed pieces. Since it’s been going on for nearly 4 weeks I upped the dose today to 5mg. The first time this happened things finally improved at that dose. I guess this time I was hoping my adrenals just needed to wake up.

My most recent GP quit a couple months ago. For the three or so years that I saw her things were basically managed and she trusted me to know how to taper. But I think the kind of doctor I need is an Endocrinologist. Maybe GI doc too? The rheumatologist I saw at the beginning was awful, and I’d hate to see another like him.

I should mention that I was sick with a fever, body aches, fatigue, no appetite for a week, 12 weeks ago, shortly before that final taper of 1.25mg with 1mg every third day. Somehow I didn’t know about sick day rules until after. Maybe it’s related to my current problems?

This morning when I got out of bed I was feeling a bit panicky, lightheaded. Better now three hours after taking the 5mg. If the 5mg stops the diarrhea (it’s only once or twice in the morning), I’m wondering if I can drop back down to 2mg or 3mg, or just start over from 5mg. The first time this happened I started over with a slow taper from 5mg., and I think it took several days before GI improvement. Unfortunately my notes aren’t that great from back then.

Any ideas/suggestions? Does this seem adrenal related? Am I doing the right thing by taking 5mg now? I don’t know what else to say. Thanks for reading this far! I haven’t posted for a long time but have spent hours here and appreciate this site so much😘😘

[123-go]

Hi. I don’t think yo-yoing between doses of pred is helping you. Diarrhoea/watery stools can be a symptom of low cortisol. It may be a good idea to ask for a morning cortisol test.

[Heidi_SF in reply to 123-go]

You're right. I guess I thought I just needed a little bump but I thought wrong. And hopped around too much.

[PMRpro Ambassador]

"Saw GP, she said PMR was gone and to taper off"

And how does she know that is the case? Another doctor with a crystal ball - wouldn't we love one too!!! Except WE know they don't work. 2mg can be doing a lot - it is enough to replace adrenal function so you don't really notice THAT side of things and it is DEFINITELY loads to be keeping PMR under wraps.

You only know that either side is ready to go it alone when you have tapered SLOWLY off pred, over a period of months, not weeks, checking to see each new dose is still enough, and the symptoms don't come back for at least 6 months. That last 2mg can often take as long as the rest of the journey from 10mg down.

[Heidi_SF in reply to PMRpro]

Thanks PMRpro,

I'm doing great, 100%, after 2 days on 5mg. Although I had no stool today, so, hmmm. I have an appointment with a gastro in 4 days. Wondering about possibly a mild case of diverticulitis. There's a pinching sensation, slightly painful, lower left abdomen. It comes and goes and I'm not feeling it at all today. Gynecologist checked it out months ago and said it was nothing, but I realized it was worse when I was having my problems earlier this month. So well see.

I'm thinking after my 10 to 14 days at higher dose to drop to 3mg. Maybe 5mg the first half, then 4mg the second half, then to 3mg and sit on it for a while

[PMRnewbie2017]

Firstly, by Cipro do you mean Ciprofloxacin? This drug is not recommended to be used with Prednisolone especially in older patients. The reason is because of increased risk of tendonitis and tendon rupture.

Secondly, I would say your digestive symptoms are very indicative of low cortisol levels. Added to that, the light headedness also is a red flag. I have failed to get below 2.5mg five times over the past seven years. The first time (about four years ago) I suddenly felt really ill at around 2pm. I take my Pred at 2am and still do. I had very frequent bowel movements. Felt very nauseous, dizzy and generally really ill. I went to bed and whilst lying there thinking, I realised what it probably was. I took an extra 2.5mg and within 2 hours I was up and about completely normal. These days I can't get below 2.5mg due to PMR symptoms returning rather than low cortisol symptoms and a basal cortisol test two years ago showed I have a good output.

So, going back to you, please stop yo-yoing your Pred dose. Below 5mg or so you have to taper slowly by no more than 10% and it's advisable to introduce this over a six week tapering schedule rather than all in one go. I see that in your first paragraph you went from 2mg to 1.5mg. That's 25% and if you did that overnight could explain a lot. Later in your piece you say that 5mg stopped the symptoms. It will do if you are approaching an adrenal crisis. Your PMR may have gone, I hope so, and if it has, you now have to slowly negotiate a return to normal adrenal function and that's going to take time and patience. The way to do this is to decide what Pred dose keeps you symptom free - in your case free from PMR symptoms and free from any adrenal insufficiency symptoms. Once you've worked that out, take that dose early in the morning. The earlier the better and definitely before 9am. Remain on that dose for a month then reduce by 0.5mg and use one of the slow tapers posted on this site. After five or six weeks you should be on that dose every day. I would stay there for another week minimum before reducing again by 0.5mg. Once you get to 2.5mg I would reduce by 0.25mg keeping to the 10% rule. It's going to take a long time but the tortoise wins the race here.

On a lighter note are you in San Francisco? I will be there next summer for a few days.

[Heidi_SF]

Yes, Ciprofloxacin🥴. The drop from 2mg to 1.5mg was what my ex-GP recommended. That was from 5 years ago. At very low levels I drop by a quarter mg now, using a slow version of DSNS.

Wow, you've been dealing with this for a long time too. Thanks for the info and advice, and best wishes for you getting through this ordeal.

I am in San Francisco. I live on the edge of The Presidio, a national park right in the city! Beautiful for hiking. Hope you'll have a nice visit here!