Question about Maintenance

[Middlesista]

Sounds like you are doing really well for being so recently diagnosed!

Remission does not necessarily mean you don't need meds, and I think many on this forum are in drug maintained remission. The MTX is commonly used as a maintenance medication. I have been on it for two years. Starting to dial back the prednisone probably indicates that your doctor thinks the inflammation is mostly under control, so that's great, right? My doc took me off of Bactrim after about a year. As someone else mentioned, there are so many combinations of meds and dosages, depending on what your doc thinks and what particular features of WG you have. I was never given any warnings or instructions about holding back on the folic acid on MTX days.

Regarding MTX, I was told I should take it for as long as I can safely tolerate it. In a post a few weeks back I attached a pdf of a recent study from some docs at Cleveland Clinic. This was a retrospective study of WG patients and what happened to them when they went off maintenance meds. You can probably find it by looking at my previous posts, or if you can't and you want to read it let me know and I'll direct you to it. What I took away from this study (and what my doc says) is that the relapse rate for this strange disease is quite high, and the benefits of staying on maintenance meds outweigh the risks.

Again, every case is different. No doubt the fact that you have had RTX factors into what your doc recommends for the future. Sounds like you are definitely on a good track though!

I hope so Tom. The eye doc just had me go up on my prednisone due to some eye pressure and pain and when I was first diagnosed I had similar symptom with loss of vision. Talked to RA today and he wants to do a MRI to see if something else is brewing. The only thing I want brewing is a nice cup of tea

i will look for your post and let you know if I can't find it. Thanks for your help.

[Middlesista]

My RA just sent me some data that my B cells are still at 0 from Rituxin yet he started me on MTX. My last Rituxin was Dec 18th. Has anyone started MTX while still suppressed by RTX? still on prednisone also

All these drugs muxing with my immune system is scary

[MaxD]

Middlesista: My docs have me on RTX for maintenance. I had my initial 4 infusions in May 2014. Thereafter, they monitor my B-cells and when they show up I get one infusion of RTX. So far I had one in March 2015 and one in Feb 2016. Some docs follow a regimen of one infusion every 6 months. The first two years after remission are critical - the rate of relapse without maintenance drugs is about 70% for those with sinus involvement (less for those who had kidney involvement). RTX has been shown to bring that down to 2%.

After my 2 year period is up, we'll see what Dr. Spiera recommends. One choice is to lower the RTX dose, another is to have me off drugs and monitor, and there may be other choices he might recommend depending on how I present clinically then.

You might wish to ask your doc if he feels RTX for maintenance is a possibility for you. Genentech also pays for co-pays (up to $10K or so per year), which helps.

Oh, I should also mention that my immunoglobulin levels are monitored as well, just to be sure that my immunity doesn't go so low that the ability to fight infections degrades significantly. I like that they don't want to over-medicate me. But it is critical to be on maintenance therapy for at least the first two or three years.

[pwc51]

I have flared 3 times since original treatment. Each time I have been on MTX and usually stopped pred. I am not sure I can relate the flares to any particular treatment or whether it is often expected that flares will happen! I sometimes thought it was related to stopping pred - but I have now been off it for almost 1 year.

I was wanting to go onto an RTX maintenance routine rather than use it just for flares but the more I hear about it I have gone off the idea - firstly it makes you more immunosuppressed and thus more likely to pick up bugs (which could end up begin far more serious!) and secondly RTX is currently the drug of last resort for treating WG and it is possible, by frequent use, you could get to a point where it does not work or you cannot, due to blood readings, be administered with it. As a result I am sticking with MTX with the hope we may be able to reduce / stop it in a year or two.

[Middlesista]

Middlesista: My docs have me on RTX for maintenance. I had my initial 4 infusions in May 2014. Thereafter, they monitor my B-cells and when they show up I get one infusion of RTX. So far I had one in March 2015 and one in Feb 2016. Some docs follow a regimen of one infusion every 6 months. The first two years after remission are critical - the rate of relapse without maintenance drugs is about 70% for those with sinus involvement (less for those who had kidney involvement). RTX has been shown to bring that down to 2%.

After my 2 year period is up, we'll see what Dr. Spiera recommends. One choice is to lower the RTX dose, another is to have me off drugs and monitor, and there may be other choices he might recommend depending on how I present clinically then.

You might wish to ask your doc if he feels RTX for maintenance is a possibility for you. Genentech also pays for co-pays (up to $10K or so per year), which helps.

Oh, I should also mention that my immunoglobulin levels are monitored as well, just to be sure that my immunity doesn't go so low that the ability to fight infections degrades significantly. I like that they don't want to over-medicate me. But it is critical to be on maintenance therapy for at least the first two or three years.

I am understanding that maintenance drugs are important and there are lots of regimes. I did well with Rituxin but have read similar comments such as what pwc51 mentions. Each person and their disease is different but I do like to read about all the options. One of my questiond about starting the MTX was why start it when my B cells are still nil? My RA tells me he wants to keep things quiet but I am trying to make sense of it all

[Middlesista]

I have flared 3 times since original treatment. Each time I have been on MTX and usually stopped pred. I am not sure I can relate the flares to any particular treatment or whether it is often expected that flares will happen! I sometimes thought it was related to stopping pred - but I have now been off it for almost 1 year.

I was wanting to go onto an RTX maintenance routine rather than use it just for flares but the more I hear about it I have gone off the idea - firstly it makes you more immunosuppressed and thus more likely to pick up bugs (which could end up begin far more serious!) and secondly RTX is currently the drug of last resort for treating WG and it is possible, by frequent use, you could get to a point where it does not work or you cannot, due to blood readings, be administered with it. As a result I am sticking with MTX with the hope we may be able to reduce / stop it in a year or two.

I did not realize that MTX makes you less immunosuppressied than RTX - that is good news as long as it works and it is promising to read you have been off prednisone for a year. Did you go off the prednisone differently the last time you were able to get off it and stay off? My RA mentioned staying on MTX for 2 years if all goes well. I will be seeing a doc at MGH in Boston next month for another opinion on my treatment plan.

[MaxD]

I am understanding that maintenance drugs are important and there are lots of regimes. I did well with Rituxin but have read similar comments such as what pwc51 mentions. Each person and their disease is different but I do like to read about all the options. One of my questiond about starting the MTX was why start it when my B cells are still nil? My RA tells me he wants to keep things quiet but I am trying to make sense of it all

Yes, each case is unique with treatments developed accordingly. Above all, as you and pwc51 say, we must each be comfortable in our choice.

In my case, Dr Spiera strongly preferred RTX because of possible nerve involvement (I had Bell's palsy before diagnosis). As for immune suppression, I've not noticed any ill effects - my immunoglobulin levels so far have remained steady at the low end of the normal range. Since treatment I have traveled widely within the US, and in Europe and India and not picked up anything. Just dumb luck perhaps, not catching a bug on any of those long flights. Hope it stays that way.

[MaxD]

I came across two recent articles that might be of wider interest, that describe current knowledge/thinking/trials about various treatments for inducing and maintaining remission.

https://www.dovepress.com/place-in-t...xt-article-ITT

SMW - Swiss Medical Weekly - The role of rituximab in the treatment of ANCA-associated vasculitides (AAV)

[annekat]

I am understanding that maintenance drugs are important and there are lots of regimes. I did well with Rituxin but have read similar comments such as what pwc51 mentions. Each person and their disease is different but I do like to read about all the options. One of my questiond about starting the MTX was why start it when my B cells are still nil? My RA tells me he wants to keep things quiet but I am trying to make sense of it all

I can't directly answer your question as to your absence of B cells, and I don't take RTX, but only MTX....however, I do know there are people on here who have taken both at the same time, for extended periods, and don't think there is a problem with it. But I don't blame you for being concerned about taking more immunosuppressants than you need. If you follow this regimen for a month, until you can see the doc at MGH for a second opinion, I don't think you'd have lost much, if anything. I hope someone on here who has taken both together will shed some light.

[Alysia]

Hi sister. I think that the losec it to protect your stomach from the pred.
as for mtx and rtx together, they love that combination. my wg dr. also wanted me to stay on both even though mtx did nothing to me. not a bad feeling as well. just nothing. he explained that this is the better combination for treatment. no idea why. I asked to stop mtx because I had too many infections and after I stopped it, the infections became less frequent. if you want to know if your body can fight infections you need to check your Igg. I check mine every 4 months or so and they are normal.