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Middlesista
03-12-2016, 11:55 AM
GPA Nov 2015: After 4 doses of Rituxin, prednisone (now at 15mg) and Bactrim my labs have improved to a CRP of 1.6 and my recent ANCA and PR3 are now negative. Still have small amt protein in urine but have had this before dx, last CT scan showed resolution of lung lesions. RA is using the R word (remission) but if that is the case why the Methotrexate - he does want to wean the prednisone off but not quite yet and he mentioned having to be on methotrexate for 2 years !!!

So the methotrexate would be a maintenance med and I have been reading about this drug and am curious what other folks have experienced. I have read that should not take Bactrim when on this or Prilosec. Have read that you should not take folic acid the day you take the methotrexate and have also read that it is helpful to split the dose half in am and half in pm. Read about potential side effects and not looking forward to taking the drug

Have also read that some people that had Rituxn did not take maintanance other than additional doses of Rituxin


Would appreciate any feedback folks can offer

annekat
03-12-2016, 03:07 PM
I do take Bactrim along with MTX, and I think a lot of people do. There is a warning about it possibly increasing the side effects, so when first filling the prescription for both, the insurance that covers your drugs may require a pre-authorization from your doc. If your doc says it's OK, it should be OK, and if you are getting regular blood work, any problems would show up. I can't remember the exact issue, but I've never had any problems in 5 years. One insurance I had was pretty difficult about it but finally said yes, the second insurance never even asked for a pre-auth, but something came up in the system each time which the pharmacist could over-ride, and my current insurance asked for the pre-auth, but all they wanted to know was if I was being treated for cancer, and when told no, they approved it. Maybe someone can explain the ins and outs of this issue, as if I've heard an explanation, I've forgotten it.

As for taking folic acid the same day as MTX, my doc never told me that, and I don't know the reason for it, but a forum member whom I respect said her doc told her not to, so I keep that in mind and try not to. I can always make up for it another day if I wish, as it has been established on here, I think, that folic acid is just peed out and there is no harm in taking greater amounts of it than you might have originally. And it can indeed be helpful to split the dose of MTX to avoid any nausea or general yuckiness you may feel. I do 4 pills at night before bed and 2 the next morning, but you can split it up however you want.

A lot of people are said to be in medicated remission even though they are still taking maintenance meds. There is no apparent disease activity, but the meds are being used to make sure it stays that way. That's probably what your RA meant when she used the R word. After 5 years, I haven't heard the R word, even though at times I've felt good enough for it to possibly apply; I think my doc is just not one to throw that word around. So it can be subjective.

And yes, there are people who just take RTX for maintenance, along with prednisone, probably, but without any additional maintenance immunosuppressant. Every case is a little different and each doc may handle things a little differently. I hope this all helps some.

Pete
03-12-2016, 04:13 PM
I'll echo much about what Anne has said. I was on mtx from July 2012 - August 2015. At first, I didn't have too much problem with it - at least nothing that altered my lifestyle (any more than wegs had already done). After about a year on mtx, my doc at Cleveland Clinic said I was in a medication induced remission. As time progressed, I noticed a bit of fatigue the day after I took my weekly dose (varied between 15 and 20 mg weekly). I started splitting my dose taking half in the morning and half in the evening. That eased the fatigue for awhile, but last spring, I was feeling a bit wiped out for a couple of days after my dose. I should note that the fatigue was merely annoying, and not debilitating. I just had to work harder to get through the days after my mtx dose.

I spoke with my doc about this, and she decided to discontinue mtx and give me rtx as a maintenance therapy. In August 2015, I took 4 x 750 mg doses of rtx. That ended the fatigue. My monthly labs have remained stable. I feel good and am able to do everything I want to do (I'm 69 going on 54). I take bacrtrim 3 x weekly. I take 5 mg prednisone daily.

While I was on mtx, I took 1 mg/day of folic acid with no difficulty. I even took it on the day I took my mtx. My doctor never said no to do so.

I also took rtx while continuing mtx. I had two 1,000 mg doses in October 2013 with no problems.

You should always ask your doc about side effects and how to take your meds. Just remember that the side effects and disclaimers listed on the drug packaging materials are worst-case and were written by lawyers to cover their clients' (pharmaceutical companies) hineys.

Alysia
03-12-2016, 08:01 PM
Hi middle sister. I am glad your remission is coming. Thanks God. I couldnt bear Imuran (vomitting & diarhea) and MTX didnt work for me, so rtx was my last hope. 2000mg for active wg. 1000mg as maintenance in remmsion. Every 6 months. The problem might be if I will have a big flare and this "weapon" will not be strong enough, like if you are on mtx and also get rtx when flaring. I dont have another choice. I think that it can be good that you will have both options.

Middlesista
03-13-2016, 07:12 AM
Thanks for the information Anne - truly helpful.

Middlesista
03-13-2016, 07:17 AM
Thanks Pete - I am back to work so the fatigue and nausea that can happen is concerning - I did fine with RTX other than fatigue for a few days but with MTX it sounds like it will be every week after a dose. I guess I have to at least try it before I can expect doc to look for alternative

Middlesista
03-13-2016, 07:26 AM
Alysia - I hope you do not have any flares at all but this disease is so unpredictable.

I am trying to be positive about the talk of a remission but just came back from seeing eye doc due to wicked pain in my eye and they told me to increase prednisone by 10 mg. I talked to the RA on call and she agreed- we are hopeful it is not related to WG. I will call my RA on Monday to see about repeat blood work - just had it done about a week ago and maybe CT or MRI repeats.

Unrelenting this disease is.

annekat
03-13-2016, 01:58 PM
Thanks Pete - I am back to work so the fatigue and nausea that can happen is concerning - I did fine with RTX other than fatigue for a few days but with MTX it sounds like it will be every week after a dose. I guess I have to at least try it before I can expect doc to look for alternative Some react more strongly than others, and I have gotten pretty used to it and don't notice it much, often not at all, plus you can pick the day to take it so as not to interfere with your work as much. I haven't yet had what Pete experienced, starting to have worse side effects at some point, after awhile. For me, the side effects of CTX were more unpleasant, and I took it every day, but I did get pretty used to that, too. If you do have to take MTX on work days, just play it by ear, split the dose, get plenty of rest the night before, eat right, etc., and maybe it won't turn out to be so bad.

pwc51
03-13-2016, 08:15 PM
One thing that will become apparent from this forum is that there are almost as many variations of treatment as there are people posting here! These differences are by the person, the country, the consultant, the nature of health care. Hence direct comparison can be difficult. However, being aware of other regimes can be useful in 'testing' your consultant to make sure he / she is aware of other regimes and not just working from one regimented book!

For me when Cyclophosphamide failed I went on RTX to control flares. Maintenance is Methotrexate with 1 5mg folic acid tablet per week, a day after MTX (definitely not on the same day!) I have been off pred for about 1 year now.

Alysia
03-13-2016, 11:39 PM
Alysia - I hope you do not have any flares at all but this disease is so unpredictable.

I am trying to be positive about the talk of a remission but just came back from seeing eye doc due to wicked pain in my eye and they told me to increase prednisone by 10 mg. I talked to the RA on call and she agreed- we are hopeful it is not related to WG. I will call my RA on Monday to see about repeat blood work - just had it done about a week ago and maybe CT or MRI repeats.

Unrelenting this disease is.

unpredictable, no doubt. Michelle has a great picture of it, wg as a roller coaster.... wild ride for sure. don't be discouraged. there are ups and downs. but you are doing the best you can. and you are a good fighter.

Middlesista
03-14-2016, 03:50 AM
Some react more strongly than others, and I have gotten pretty used to it and don't notice it much, often not at all, plus you can pick the day to take it so as not to interfere with your work as much. I haven't yet had what Pete experienced, starting to have worse side effects at some point, after awhile. For me, the side effects of CTX were more unpleasant, and I took it every day, but I did get pretty used to that, too. If you do have to take MTX on work days, just play it by ear, split the dose, get plenty of rest the night before, eat right, etc., and maybe it won't turn out to be so bad.

Thanks Anne - it will end up that every other week I will be taking the MTX on the day before I work since my schedule is pretty consistent unless I alter the days I take it which I am not sure is a good idea. I suppose I can check with RA about that.

Middlesista
03-14-2016, 03:58 AM
One thing that will become apparent from this forum is that there are almost as many variations of treatment as there are people posting here! These differences are by the person, the country, the consultant, the nature of health care. Hence direct comparison can be difficult. However, being aware of other regimes can be useful in 'testing' your consultant to make sure he / she is aware of other regimes and not just working from one regimented book!

For me when Cyclophosphamide failed I went on RTX to control flares. Maintenance is Methotrexate with 1 5mg folic acid tablet per week, a day after MTX (definitely not on the same day!) I have been off pred for about 1 year now..

Thanks pwc51 - how often have you had flares being on MTX for maintenance? My RA is using the MTX to try and get me off prednisone as well as a maintenance drug - at least that is what he explained to me

interesting what you write about folic acid - I have read a lot of conflicting info about this and many people take it the same day. Same with Bactrim - if u read the info it tells you about lots of issues with takng MTX with Bactrim but lots of folks seem to take them. I well understand that we are all different but I wonder why take the chance that nothing bad will happen

renidrag
03-14-2016, 09:47 AM
As another different view,I stopped all WG meds June 30, 2010 and have not been back, other than a two week stint
of prednisone in 2014. We are now watching SED rate, CRP andPR3 ever so slowly rising. Perhaps I too will be on maintenance soon. Definitely not experienceing a flare.

Middlesista
03-14-2016, 10:33 AM
As another different view,I stopped all WG meds June 30, 2010 and have not been back, other than a two week stint
of prednisone in 2014. We are now watching SED rate, CRP andPR3 ever so slowly rising. Perhaps I too will be on maintenance soon. Definitely not experienceing a flare.

i was so hoping that I could get away with taking nothing but the Bactrim and titrate slow off prednisone. I think the meds are so difficult for our poor bodies to deal with. I am looking forward to getting into MGH to see what the doc there seem to think I know we are all different and my RA who has done well for me feels it is important for me to be on maintenance meds - so I will follow his advice

Was your ANCA, Pr3 and inflammatory markers positive/high initially and then went to negative/low? I hope you can stay status quo with no meds and your numbers stay negative.

Girly3800
03-14-2016, 12:44 PM
My husband takes MTX as maintenance and 2 mg of Folic acid a day. The MTX fatigues him for 3 days after taking it. Splitting the dose doesn't help much at this point, although at one point when on a higher dose he split it. He does not take Bactrim. While he was on Cytoxan he did but it was stopped when he became somewhat stable and switched to MTX. The rheumatologist told us that the Bactrim causes the MTX to remain longer in his system which could ultimately affect his kidneys. At the moment his steroids are at 8 1/2 mg a day. He stopped Prilosec just a couple of months ago. We'll see tomorrow with the rheumatologist tomorrow whether that is a good idea - the Prilosec theoretically stops some of the stomach damage caused by the steroids.

Last year he stopped the MTX because he was stable and had had good blood work for awhile. Didn't take even two months before he was in a raging flare. We (he) have decided that fatigue is far better than a flare and he will continue on MTX until it no longer works for him. The flare was the likely culprit for the mononeuropathy of his right elbow which has resulted in wasting muscles and two surgeries. The fatigue has been getting slightly worse every week though.

Middlesista
03-15-2016, 01:19 AM
RA said to continue Prilosec but to stop Bactrim DS. We shall see.

vdub
03-15-2016, 03:22 AM
While I was on mtx, I took 1 mg/day of folic acid with no difficulty. I even took it on the day I took my mtx. My doctor never said no to do so.
I don't think it is so much a matter of you can't take folic on mtx days, but, rather, that it is a waste, because the folic is flushed by the mtx. I'm on 20mg mtx for maintenance and 2mg/day of folic on none mtx days.

Alias
03-15-2016, 06:20 AM
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!

vdub
03-15-2016, 08:12 AM
I've been on mtx for 6 years now. I started at 30mg and then went down to 25 and now 20. I've been on 20mg for the past 5 years. I have been on pred on and off, but mostly on. I was at 8mg most of last summer and I'm currently at 6mg with a 1mg/month taper.

Surgeries keep getting in the way of having a nice pred taper. Whenever I go in for a surgery (next one will be June/July time frame), I have to be put on large doses of hydrocortisone in order to prevent an adrenal crisis. That kind of messes up my taper and probably doesn't help my remission. Actually, I'm not certain I've ever been in remission, at least not for the psoriatic arthritis.

Middlesista
03-15-2016, 08:47 AM
My husband takes MTX as maintenance and 2 mg of Folic acid a day. The MTX fatigues him for 3 days after taking it. Splitting the dose doesn't help much at this point, although at one point when on a higher dose he split it. He does not take Bactrim. While he was on Cytoxan he did but it was stopped when he became somewhat stable and switched to MTX. The rheumatologist told us that the Bactrim causes the MTX to remain longer in his system which could ultimately affect his kidneys. At the moment his steroids are at 8 1/2 mg a day. He stopped Prilosec just a couple of months ago. We'll see tomorrow with the rheumatologist tomorrow whether that is a good idea - the Prilosec theoretically stops some of the stomach damage caused by the steroids.

Last year he stopped the MTX because he was stable and had had good blood work for awhile. Didn't take even two months before he was in a raging flare. We (he) have decided that fatigue is far better than a flare and he will continue on MTX until it no longer works for him. The flare was the likely culprit for the mononeuropathy of his right elbow which has resulted in wasting muscles and two surgeries. The fatigue has been getting slightly worse every week though.
Thanks Girly - my RA also told me to stop Bactrim for reasons you wrote but to continue with the Prilosec. I am still on Prednisone and so want to get off it.

My my best to your husband s d hope the fatigue lessens.

Middlesista
03-15-2016, 08:53 AM
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
03-15-2016, 08:57 AM
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
03-15-2016, 03:57 PM
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
03-15-2016, 07:13 PM
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
03-15-2016, 11:37 PM
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
03-15-2016, 11:43 PM
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
03-16-2016, 01:30 AM
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
03-16-2016, 02:44 AM
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-therapy-of-rituximab-in-the-treatment-of-granulomatosis-with--peer-reviewed-fulltext-article-ITT

SMW - Swiss Medical Weekly - The role of rituximab in the treatment of ANCA-associated vasculitides (AAV) (http://www.smw.ch/content/smw-2015-14103/)

annekat
03-16-2016, 03:49 AM
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
03-16-2016, 04:30 AM
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.

Middlesista
03-16-2016, 04:32 AM
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-therapy-of-rituximab-in-the-treatment-of-granulomatosis-with--peer-reviewed-fulltext-article-ITT

SMW - Swiss Medical Weekly -*The role of rituximab in the treatment of ANCA-associated vasculitides (AAV) (http://www.smw.ch/content/smw-2015-14103/)
Thanks so much Max for posting these links - great info and the bottom line it seems for me is



6. RTX can be used as maintenance therapy as an alternative to azathioprine or MTX. The best treatment regimen will need to be defined as suggested strategies vary widely.

What I need to learn is why in my case MTX was chosen- I read that the azathioprine was considered safer than MTX.

Middlesista
03-16-2016, 04:34 AM
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.

Thanks Anne- it is comforting to know that others have taken both and that you have been on MTX sucessfully pretty much also

Middlesista
03-16-2016, 04:36 AM
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.

Thanks Alysia - will ask RA to make sure these labs are done

Hope you are feeling a little better. ��

vdub
03-16-2016, 05:34 AM
Alysia, Do you know if the IgG is also called Gobulin? I went back through my blood tests and I see Gobulin and ALB/Gobl results, but no IgG. I hadn't paid much attention to it, but will now.

While trying to find the answer myself, I read this interesting comment on Globulin Levels | MD-Health.com (http://www.md-health.com/Globulin.html)

"Hypothyroidism can also alter the levels of globulin in the system, as can glucocorticoid, which can be caused by a tumor that releases cortisol-mimicking compounds, an overactive adrenal gland or excessive use of cortisone or cortisone-mimicking medications."

The part that caught my attention was "cortisol-mimicking medications". My replacement drug for cortisol is hydrocortisone, a weaker form of pred. And, of course, a lot of us are on pred as a matter of routine. It opens up a lot of questions that could be a separate topic all its own. Good comment Alysia.

MaxD
03-16-2016, 09:12 AM
IgG, IgA, IgM are three indicators in the Immunoglobulin test panel - this test is ordered in addition to the standard CBC, ANCA, ...

Alysia
03-17-2016, 05:16 AM
Alysia, Do you know if the IgG is also called Gobulin? I went back through my blood tests and I see Gobulin and ALB/Gobl results, but no IgG. I hadn't paid much attention to it, but will now.

While trying to find the answer myself, I read this interesting comment on Globulin Levels | MD-Health.com (http://www.md-health.com/Globulin.html)

"Hypothyroidism can also alter the levels of globulin in the system, as can glucocorticoid, which can be caused by a tumor that releases cortisol-mimicking compounds, an overactive adrenal gland or excessive use of cortisone or cortisone-mimicking medications."

The part that caught my attention was "cortisol-mimicking medications". My replacement drug for cortisol is hydrocortisone, a weaker form of pred. And, of course, a lot of us are on pred as a matter of routine. It opens up a lot of questions that could be a separate topic all its own. Good comment Alysia.

Thanks vdub. if I understand correctly then the immunogloubulins are one kind of globulins. the gamma globulin. there are also alpha and beta.
I don't know much about this, just what I learned when I was with my sweet Phil at the hospital. we wanted to know if he is able to fight the infections that he got in the lungs when he was at the ICU. his Igg came back zero ! means that his immune system couldn't fight at all. prob because of pred and rtx and all that sickness. they gave him IVig. the day after, his Igg came back normal. they continue to check it and when it was getting under the normal again, they gave him another IVig.
the info that we collected at that time is in this thread on pages 14-16 http://www.wegeners-granulomatosis.com/forum/random-off-topic-discussion/4238-pberggren-memorial-thread-15.html
excellent post about this issue is on page 15, post number 143 of me2.

in short, you can check it and if its under the normal then you might need IVig. mine are always normal so far.