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.