New to this - Tapering Pred?

[mzschaumkell]

Hi guys, so my partner was diagnosed 2 weeks ago, and has been taking 60mg of pred and 200mg of Cyclophosmophide. Doctors have said that on 1 August he can drop the pred to 40mgs.

My question is, the pred is meant to reduce the inflammation, so once the pred goes down do we just keep an eye on the initial symptoms of the disease returning? Confused over what we are meant to look at. Doctors are not overly specific with what this means.

Any help appreciated!

Jo

[Pete]

Hi Jo,

You should be on the lookout for the original symptoms, but they may not be as severe as with disease onset.

From my experience, a slower pred taper is better. It took me most of a year to taper from 40 mg/day to zero. I was a little faster in the beginning (5 mg less every two weeks), but I was tapering at 1 mg every two weeks once I got below a daily dosage of 10 mg. Once you get to about 10, the adrenal glands will (hopefully) resume producing the body's own prednisone equivalent. If they don't, you may have to hold at a dosage where you remain asymptomatic.

[annekat]

Different docs may have different ideas of how to taper pred. I would have preferred to go from 60mg to 50mg when I was at that stage, but my doc wanted me to go from 60 to 40. I don't know how much difference it made. I think my lung symptoms were noticeably better at that point, but the other symptoms took longer, and there was still the fatigue, etc., so it was hard to keep an eye on returning symptoms. I guess the lung symptoms were the ones I really would have noticed if they had to started to worsen again.

What I learned from this forum in advance was that once you have been on high dose pred, that is I think from 60mg or so and tapering down to say 20 or 30mg., for longer than a couple of months, then your adrenals have shut down. So tapering will be much more difficult at the lower doses, under 15 or 20mg. and especially under 10mg., since the adrenals will need to be coaxed into coming back on board, as Pete indicates above. I did have some trouble getting from 20 to 10mg; if I tapered too fast, symptoms would worsen. My doc sort of left it up to me to monitor the tapering, or I took it into my own hands, and I would generally try to taper 2.5mg at a time. If I had extra stress or whatnot, I might alternate the higher and lower doses or take a little extra on really bad days. I'm not sure my doc approved but there wasn't much he could do. Now I'm down to a solid 10mg and I will wait for the doc to suggest I try to taper lower. At the high doses your partner is now on, it will be awhile before he reaches this tricky tapering stage.

[Dirty Don]

I, like most on here, started 2 years ago with 60+mgs of pred, within 6 mos was down to 40, then a slow weaning since then. Nearly 2 years later, Mayo docs have me at 3mgs, and at the end of this month I expect to start a final weaning. I asked them why so long on the pred when I appear to be feeling fine...their simplistic answer was better safe than sorry and such low doses of pred, while still helping, aren't really much more than the adrenals put out regularly...and, at my age, I shouldn't feel the long term bone effects of pred. Sheesh...at my age...how dare they!!! LMAO! Anyways, except for a little 'withdrawal' at one point of weaning off pred, I have felt fine with it the entire time.

[mzschaumkell]

I guess we will just try and go from the 60 to 40 and see what happens! Doctor doesnt think it will be an issue considering symptoms have reacted pretty well already....I think they are trying to wean him off or to a low dosage in 6 months, which seems fast! They also are going to stop the Cyclo and change to Azathriopine in 3 months. I do ask a lot of questions!! But just not sure how much experience they have had....

[mzschaumkell]

Can you still take a probiotic whilst taking an antibiotic??

[annekat]

Can you still take a probiotic whilst taking an antibiotic?? Yes, I think many of us have. I think the probiotic can help with some antibiotic side effects. Although I've never had any side effects from Bactrim, which is probably the one he is taking, or different brand name. Sulfamethoxazole is the generic name. But I think taking a probiotic is a bit like eating lots of yogurt and is good for the stomach and gut.

As for the meds, going from 60mg. pred to a low dose in 6 months could be fast for some people, but maybe not for one whose symptoms are subsiding as fast as his. The other issue, quitting CTX so soon and switching to a maintenance drug after 3 months.... well, that would be ideal, but I don't think many are able to do that. Your partner may be one of the lucky ones, as it sounds like he's doing very well. But I don't see how the docs can predict in advance what the schedule of meds will be since they need to wait to see his progress over that time, look at his bloodwork, etc. My doc made plans like that which had to be revised.... not that I was doing badly, in fact I've done quite well, I think, but it all took a bit longer than he thought it would.

[marylz]

I take one with my doctors approval:smile1: