Tapering Immune Suppressants?

[mrtmeo]

Do the maintenance immune suppressant drugs need to be tapered?

My mom took mofetil for almost 3 weeks but got sick on it and stopped.
She is still on 9mg prednisone but she has been jittery, loss of appetite and much more lethargic since stopping.
She had the same problem with imuran and was using it to try to reach remission since getting the 4 weekly infusions of Rituxan and one bolus of Citoxan.
She is 5 months from her first infusion.

[annekat]

I haven't heard of the immunosuppressants needing to be tapered. Sometimes they are, to see if a person will remain stable with a lower dose and then possibly with no dose. Another reason is when switching from one to another, lowering the dose of the first one but continuing it until the new one is gotten used to or starts to take effect. I continued on a half dose of CTX for awhile when starting MTX. But it's not like prednisone, where one will have definite withdrawal reactions if stopping it cold turkey, because the adrenals cannot kick back in right away, if at all, to make up for it. That is how I understand it, anyway, having learned all I know right here on this forum.

[Pete]

When I switched from ctx to mtx, I was off all immunosuppressants for about 10 days with no ill effects. I have recently dropped from 17.5 mg to 15 mg/wk of mtx. It has helped with the side effect of fatigue on the day after the dose. My doctor says that 15 mg/wk is the minimum dose. Hope to have the discussion about getting off it altogether after the holidays.

[me2]

I was just wondering some things on this subject myself. I am on 15 mg/wk mtx also. I didn't know this was the minimum.
I am feeling good enough lately to ask my doc soon about possibly getting off of it too. I'll be interested to see what his criteria will be for making the decision.
And as far as tapering, I don't know the answer except to say that I don't remember tapering off of any immune
suppressants I have been on. I just remember stopping.

[Dirty Don]

I'm in the process of tapering mtx now (15mg/wk originally). 1/3 every 3 mos. Seems to be working, had one 'fallback' after first reduction, then nothing since. Am feeling well. Don't ever just stop a drug like the ones we're taking. Weaning is always best to see 'where you land' rather than crashing then going back up on drugs to balance the tapering effects. I also tapered pred very slowly, failed once, then finally achieved 'no pred' after 6 mos of a very slow weaning. Best to you.

[mrtmeo]

All the immune suppressants are "Steroid Sparring" meaning they act to increase our internal steroid production, but my mom's issue could just be related to flaring because she had to stop. I upped her prednisone a little with no effect, but pred never really did much for her anyway.
Anne's probably right that it is tapered to see if someone flares.
Thanks for everyones info.

[annekat]

All the immune suppressants are "Steroid Sparring" meaning they act to increase our internal steroid production, but my mom's issue could just be related to flaring because she had to stop. I upped her prednisone a little with no effect, but pred never really did much for her anyway.
Anne's probably right that it is tapered to see if someone flares.
Thanks for everyones info. I thought "steroid sparing" meant that by using immunosuppressants, we need less steroids because the immunosuppressants reduce disease activity. So I thought that maybe by increasing my MTX a bit, I'd be able to taper pred more easily because there'd be less inflammation for the pred to relieve. So I could go down on the dose without noticing it as much and the adrenals might be more able to recover from the drop. But not that the MTX would directly increase internal steroid production.

And to clarify, if necessary, when I implied something would be tapered "to see if someone flares" (not my exact words), I meant the immunosuppressant, not the pred. The current dose of pred would normally still be there for backup, I'd think, when lowering the dose of the immunosuppressant.

[JeanMarie]

I Think you're right, Anne. Immunosuppressants work via a different mechanism than pred.

[mrtmeo]

I thought "steroid sparing" meant that by using immunosuppressants, we need less steroids because the immunosuppressants reduce disease activity. So I thought that maybe by increasing my MTX a bit, I'd be able to taper pred more easily because there'd be less inflammation for the pred to relieve. So I could go down on the dose without noticing it as much and the adrenals might be more able to recover from the drop. But not that the MTX would directly increase internal steroid production.

And to clarify, if necessary, when I implied something would be tapered "to see if someone flares" (not my exact words), I meant the immunosuppressant, not the pred. The current dose of pred would normally still be there for backup, I'd think, when lowering the dose of the immunosuppressant.

Yes, that is what they do.
You don't have to take the prednisone eventually if it is lowering the immune activity enuf to stop the disease and your renals are creating steroids.
It spares your internally made steroids by blocking the immune system attacks, so that your own internally made steroids can do their job instead of fighting the immune system attacks.
Hope that makes sense.

Yes, I understood the tapering of the immune suppressant and not the prednisone in your meaning.

[annekat]

Yes, that is what they do.
You don't have to take the prednisone eventually if it is lowering the immune activity enuf to stop the disease and your renals are creating steroids.
It spares your internally made steroids by blocking the immune system attacks, so that your own internally made steroids can do their job instead of fighting the immune system attacks.
Hope that makes sense.

Yes, I understood the tapering of the immune suppressant and not the prednisone in your meaning. The problem is that if the adrenals have not been creating steroids for a long time, because the pred has been doing their job for them, they will often not easily come back on board and start functioning. That is why people have trouble tapering pred even if the disease activity has pretty well been stopped by the immunosuppressant. So they can have the known withdrawal symptoms of pred such as extreme fatigue and adrenal shock without it being new disease activity. Or the disease activity can start back up again just from the lack of steroids, regardless of having stopped or reduced the immunosuppressant. People may be in remission enough to be off the immunosuppressant, but still need to take pred because it is so hard to wean off of it without ill effects, whether they be disease symptoms or just pred withdrawal symptoms. I've been hearing of people with severe joint pain from stopping pred, but no other WG symptoms were mentioned, so I don't think they considered it a flare. It sounded more like something one might just have to go through to get off pred. Or the joint pain could be a slight return of disease activity. Ideally, the person's adrenals would fully kick in, the joint pain would stop, and they would not need to go back on immunosuppressants or pred. Some people seem to have a much easier time getting off pred than others. Every case seems to be a little different.

[mrtmeo]

The problem is that if the adrenals have not been creating steroids for a long time, because the pred has been doing their job for them, they will often not easily come back on board and start functioning. That is why people have trouble tapering pred even if the disease activity has pretty well been stopped by the immunosuppressant. So they can have the known withdrawal symptoms of pred such as extreme fatigue and adrenal shock without it being new disease activity. Or the disease activity can start back up again just from the lack of steroids, regardless of having stopped or reduced the immunosuppressant. People may be in remission enough to be off the immunosuppressant, but still need to take pred because it is so hard to wean off of it without ill effects, whether they be disease symptoms or just pred withdrawal symptoms. I've been hearing of people with severe joint pain from stopping pred, but no other WG symptoms were mentioned, so I don't think they considered it a flare. It sounded more like something one might just have to go through to get off pred. Or the joint pain could be a slight return of disease activity. Ideally, the person's adrenals would fully kick in, the joint pain would stop, and they would not need to go back on immunosuppressants or pred. Some people seem to have a much easier time getting off pred than others. Every case seems to be a little different.

Yes, some people may have to stay on pred indefinitely low dose due to too much renal atrophy and suppression.
My mom got the same prednisone withdrawal symptoms when she stopped the Mofetil even tho she was still on the same amount of prednisone and I even upped her dose a couple mg.

[annekat]

Yes, some people may have to stay on pred indefinitely low dose due to too much renal atrophy and suppression.
My mom got the same prednisone withdrawal symptoms when she stopped the Mofetil even tho she was still on the same amount of prednisone and I even upped her dose a couple mg.

Mofetil and prednisone are two very different drugs. If she got withdrawal symptoms from Mofetil, I think that would be unrelated to the withdrawal symptoms one would get from stopping prednisone. If it was an increase in disease activity and the symptoms of that, that is different from withdrawal symptoms. That would warrant increasing the pred and/or going back on an immunosuppressant.

Clearing up some terminology, "renal" refers to the kidneys and not to the adrenals. So I think you meant to say adrenal atrophy if you were talking about the effects of long term prednisone use.

[mrtmeo]

Mofetil and prednisone are two very different drugs. If she got withdrawal symptoms from Mofetil, I think that would be unrelated to the withdrawal symptoms one would get from stopping prednisone. If it was an increase in disease activity and the symptoms of that, that is different from withdrawal symptoms. That would warrant increasing the pred and/or going back on an immunosuppressant.

Clearing up some terminology, "renal" refers to the kidneys and not to the adrenals. So I think you meant to say adrenal atrophy if you were talking about the effects of long term prednisone use.

Yes, I was referring to adrenals.
My mom's symptom was muscle cramps which last about 3 days when tapering prednisone and happened again when she stopped the Mofetil, so it is the same symptom.

[annekat]

Maybe the same symptom but not the same exact cause. Obviously there is a balancing act going on between immunosuppressants and pred. I just don't think the two drugs do the same thing. I've never heard of an immunosuppressant causing adrenal shock when tapering. Either the adrenals are producing or they aren't, and pred is what takes their place when they aren't. But I do need to look up adrenal shock again and see what the usual symptoms are. I wouldn't assume cramps are from adrenal shock. Not saying they can't be, either. Could be that or an increase in disease activity, which could require more pred in the absence of anything else, but doesn't mean that adrenal shock has occurred. Real adrenal shock, I've gathered, is very dangerous and can cause loss of consciousness and even death.

[mrtmeo]

Maybe the same symptom but not the same exact cause. Obviously there is a balancing act going on between immunosuppressants and pred. I just don't think the two drugs do the same thing. I've never heard of an immunosuppressant causing adrenal shock when tapering. Either the adrenals are producing or they aren't, and pred is what takes their place when they aren't. But I do need to look up adrenal shock again and see what the usual symptoms are. I wouldn't assume cramps are from adrenal shock. Not saying they can't be, either. Could be that or an increase in disease activity, which could require more pred in the absence of anything else, but doesn't mean that adrenal shock has occurred. Real adrenal shock, I've gathered, is very dangerous and can cause loss of consciousness and even death.

They are not the same drugs, but they work in similar fashion.
Immune suppressants, (ex. Cellcept and Imuran) suppress the immune system in a different way than prednisone, usually by inhibiting enzymes needed for growth of B and T cells or similar pathways .
Glucocorticoid steroids, which the body can generate, suppress the immune system too, but we don't generate enuf with certain diseases to quell the immune attacks, especially, when it is our own immune system doing the attacking.
Prednisone typically stops or slows down inflammation.

[annekat]

The point I was trying to make, badly, is that our immunosuppressants do not supply cortisol to the body at all, and prednisone does. So stopping prednisone abruptly is going to cause a lot more of an immediate problem than stopping one of the immunosuppressants. Especially if we have been on pred long enough for our adrenals to have totally shut down, which they do after two months of 20mg./day or more, if I'm remembering right what our esteemed Sangye has said on here more than once. Yes, prednisone is known as an immunosuppressant, but it is more known as an anti-inflammatory. It suppresses the inflammation caused by immune system activity; I don't know to what extent it suppresses the immune system in general, and I'm well aware that it is not as much as our well known immunosuppressants. That is why we need them both, as the pred is better at controlling inflammation by virtue of the cortisol it provides.

BTW, I briefly looked up pred side effects and withdrawal symptoms. The side effects included bone, muscle and tendon problems among the others we know about. The withdrawal symptoms were mainly nausea, dizziness, and vomiting, and maybe fainting, I forget. But that was only one site, and every site will say something a little different.

[mrtmeo]

The point I was trying to make, badly, is that our immunosuppressants do not supply cortisol to the body at all, and prednisone does. So stopping prednisone abruptly is going to cause a lot more of an immediate problem than stopping one of the immunosuppressants. Especially if we have been on pred long enough for our adrenals to have totally shut down, which they do after two months of 20mg./day or more, if I'm remembering right what our esteemed Sangye has said on here more than once. Yes, prednisone is known as an immunosuppressant, but it is more known as an anti-inflammatory. It suppresses the inflammation caused by immune system activity; I don't know to what extent it suppresses the immune system in general, and I'm well aware that it is not as much as our well known immunosuppressants. That is why we need them both, as the pred is better at controlling inflammation by virtue of the cortisol it provides.

BTW, I briefly looked up pred side effects and withdrawal symptoms. The side effects included bone, muscle and tendon problems among the others we know about. The withdrawal symptoms were mainly nausea, dizziness, and vomiting, and maybe fainting, I forget. But that was only one site, and every site will say something a little different.

Hi Anne,
I just realized what your point is because I did not intend to include prednisone in the immune suppressants question for tapering.
It's a given that we have to taper prednisone.
It didn't occur to me to be more specific, so sorry for the confusion.

My question was whether people have to taper cellcept, imuran or any other antibody blockers.
I talked to a friend that said she had to taper Imuran over 60-90 days.

[annekat]

Hi Anne,
I just realized what your point is because I did not intend to include prednisone in the immune suppressants question for tapering.
It's a given that we have to taper prednisone.
It didn't occur to me to be more specific, so sorry for the confusion.

My question was whether people have to taper cellcept, imuran or any other antibody blockers.
I talked to a friend that said she had to taper Imuran over 60-90 days. I understand, Blake, and thanks. As for tapering the immunosuppressants, it seems from the responses above and elsewhere on this site, that some docs have people taper them and some don't. I don't think it is nearly as essential to taper them as it is for prednisone, but it certainly can't hurt. It seems like a good idea. Everyone is different and some might suffer more ill effects by not tapering than others would.