What is the smallest dose of Rituxan?

[me2]

My immune system has been depleted to super low levels by years of Rituxan and other medications and yet, I am still having a WG flare and need to get on a primary immune suppressant. Methotrexate and prednisone alone is not getting the job done. My doctor has ordered a Rituxan infusion. I'm wondering what would be the smallest dose that might be effective.
What have other people done? If you have been on a smaller than normal dose I would like to hear about your experience.
Perhaps someone has instead done lower doses of cytoxan? Any info would be good.

Thanks,
Kirk

[annekat]

Not that I "Like" what you are going through and dealing with, Kirk, but just glad you are sharing, and hoping you get some answers. In fact, I am very unhappy about what this crappy disease is doing to you, after all you have already been through over many years. I wonder, too, about Cytoxan, since it worked for me, but I don't know how much you have already had or what the smallest effective dose would be. I understand that the Rituxan you've been taking has made you much more vulnerable to pneumonia and other infections. I hope someone has some ideas or can relate a similar experience.
Anne

Sent from my MotoE2(4G-LTE) using Tapatalk

[John S]

What antibiotic are you taking with the Rtx?

[me2]

What antibiotic are you taking with the Rtx?

Hi John,
I have not been taking an antibiotic with Rituxan. As I have had infections I've been prescribed antibiotics specific to whatever infection I have. In recent times it is usually pseudomonas and I took Levaquin a lot until I developed tendon pain from it. Thankfully, I have not had infection for many months.
Many years ago it became common practice to prescribe Bactrim propholactically but I don't seem to hear much about that practice any more. I don't know if it is still done.

A few months ago I had pneumonia and I have forgotten what I took for that but I was also given an inhaled antibiotic called Tobramycin. I have been doing the inhaled treatments one month on and one month off for several months and thankfully my lungs are staying clear. I think it also helps my sinus infections. For sinus infections I have used a saline rinse with levafloxacin. Technically, I should avoid it because it is related to Levaquin but because it is topical I don't seem to have any problem using it.

[me2]

Not that I "Like" what you are going through and dealing with, Kirk, but just glad you are sharing, and hoping you get some answers. In fact, I am very unhappy about what this crappy disease is doing to you, after all you have already been through over many years. I wonder, too, about Cytoxan, since it worked for me, but I don't know how much you have already had or what the smallest effective dose would be. I understand that the Rituxan you've been taking has made you much more vulnerable to pneumonia and other infections. I hope someone has some ideas or can relate a similar experience.
Anne

Sent from my MotoE2(4G-LTE) using Tapatalk

Hi Anne, thanks for the reply and your concern. Cytoxan , in spite of how bad it sounds, has been a very effective treatment for me. It also works very quickly compared to Rituxan. I'm wondering if there might be a small dose that would be just enough. I may be at my lifetime dose , I'm not sure. It has been many years since I used Cytoxan.

I trust my doc to come up with a good plan but it doesn't hurt to look for ideas on my own. There have been several cases in my past where it was my own investigation that found the best idea. Maybe I should ask my doc what some alternatives might be.

[annekat]

What you say about Cytoxan makes sense. I think a few people have gone over their lifetime dose with no issues, yet. Which doesn't make it ideal, of course. But it might be no worse, or better, than continuing to take Rituxan and being subjected to recurring pneumonia. Or you could try a completely different drug. There was a thread about a new one that sounded promising, but I doubt that it is available yet. It will be interesting to hear what your doc says.


Sent from my MotoE2(4G-LTE) using Tapatalk

[John S]

Hi John,
I have not been taking an antibiotic with Rituxan. As I have had infections I've been prescribed antibiotics specific to whatever infection I have. In recent times it is usually pseudomonas and I took Levaquin a lot until I developed tendon pain from it. Thankfully, I have not had infection for many months.
Many years ago it became common practice to prescribe Bactrim propholactically but I don't seem to hear much about that practice any more. I don't know if it is still done.

A few months ago I had pneumonia and I have forgotten what I took for that but I was also given an inhaled antibiotic called Tobramycin. I have been doing the inhaled treatments one month on and one month off for several months and thankfully my lungs are staying clear. I think it also helps my sinus infections. For sinus infections I have used a saline rinse with levafloxacin. Technically, I should avoid it because it is related to Levaquin but because it is topical I don't seem to have any problem using it.

I am allergic to Sulfa so I can't take Bactrim. I do get a monthly breathing treatment of Pentamidine in it's stead. I have not had any infections.

[Alysia]

Hi Kirk,
So sorry that your wg is flaring :thumbdn:
My wg dr. Talked about 500mg as a possibly affective minimum doze. BUT I guess it depends on the patient and his wg. For me 500mg isn't enough. Actually even 1000mg can hardly keep my wg quiet.
I sugest you to ask about Ivig. It can help both your immune system and might also help with your wg. My wg dr. Said that in some cases Ivig is the treatment for wg.
As for bactrim, as far as I know, it is still used and worth taking. I can't use it any more because it elavated my liver enzyms. But when I was on it, my nose behaved much better.
Please update us how are you doing. Sending you prayers.

[me2]

Hi Alysia,

thanks for your ideas. Its very helpful. Anne has given me some good ideas too. I cannot think well for myself these days. You are right about IVIG. I kinda forgot about it. I cant think clearly. Pain, suffering, prednisone, lack of sleep, activity of wg on my brain- I guess I can expect that for myself. I'm a zombie this morning.
I will ask my doc about IVIG. I asked a couple of months ago and he did not rule it out and seemed to find the idea interesting. It has the benefit of not further decreasing immune response and in fact improving it for those like us with lowered immune. Don't quote me.

That is interesting that bactrim seemed to help your nose. It seems like that there is this sub-set of problems with wg that have something different about them because they seem to follow an independent track from the main disease. Nose problems, brain problems, tracheal problems, sinus. We know there is SOME relationship to infection in relapse. Infection is of course an immune BOOST of sorts and that may be why it contributes to relapse. I myself avoid flu shots because I suspect they cause more risk to ME than they relieve. I had a bad reaction to a Hepatitis shot and it really 'seemed' like I had a sensitive system that just didn't like to get a boot in the side.

Hi John,

Many years ago when it was first found that Bactrim had a unique role in wg treatment I too was allergic to it. I had the fortune to me Dr DeRemee at a WG conference . He is the one who first observed it's effectiveness under certain circumstances and out of his work grew a study that confirmed its position in treatment. I encountered him in a hall way and told him I was allergic to it. Was there any other possible avenue for me? He said " Bactrim has two components. Trimetheprim and Sulfamethoxazole. We can be pretty sure that your allergy is to the Sulfa portion- this is common. We do NOT know if Trimetheprim itself might be effective. You can look into this. "

When I got home I began my research. The internet was fairly new but had become useful. I did not find much information on Trimetheprim and grew discouraged. But, I saw small reference to treatment of AIDs patients using Bactrim. It is a front line treatment for the resperitory infections that end up being their demise. Unfortunately , allergy to it is pretty common.
I then saw a reference to de-sensitiztion study. This study demonstrated that about 80 percent of people could be de-sensitized to Bactrim allergy and then able to take it normally.

I took this study to my doctor at the time. He said "Lets try it." It is quite simple (and now common) . You take VERY small doses and work your way up to treatment. For some reason the body gets used to this and Bactrim again becomes a treatment option.

We tried it. It worked. And to this day I can still take Bactrim with no ill effects.

Sorry for the long story. The point of course is you have a very good chance of being able to take Bactrim again with this protocol. The pharmacy prepares the course of treatment for you. It is less than a couple of weeks if I remember correctly.

[me2]

John , one more thing I forgot to add (hard to believe a post that long left ANYTHING out huh? )

Even if you are not currently using or needing Bactrim , if it were me, I would still want to try the desensitization protocol and get Bactrim back into your tool box of antibiotics.
It is a very useful and important antibiotic to have as an option- especially for a wg patient.

[annekat]

I used Bactrim for a few years after dx in 2011, starting when I was taking Cytoxan. I was reading about it a lot on the forum, too. I also remember reading that in addition to being a prophylactic for infections like pneumonia, especially a specific kind that AIDS patients commonly get, it was also thought to help prevent relapses. I thought it was you, me2, among others, maybe, who mentioned bacteria in the nose and sinuses, specifically staphylococcus aureus, of which MRSA is one type, that could stimulate relapses, which I think your doc had discussed with you. And that Bactrim DS, taken 3x per week, as most of us have who've taken it, could be effective in working against this bacteria and thereby working against relapses. It may be just a theory. But it could explain why it made your nose better, Alysia, though it didn't prevent your relapses. And @Kirk, if you can still take Bactrim, you might consider it.

As for me, when I had switched to methotrexate and eventually gotten a new rheumy, he said Bactrim was "overkill" with MTX, and unnecessary. I can't be sure he is right, but I seem to be doing OK without it over the last few years.

Sent from my MotoE2(4G-LTE) using Tapatalk

[drz]

I am allergic to Sulfa so I can't take Bactrim. I do get a monthly breathing treatment of Pentamidine in it's stead. I have not had any infections.

I have been doing this for almost ten years. I do take the non sulfa part of Bactrim, Trimethoprim. I tried the demonetization treatment but had to quit on the second day of a 20 day procedure to work up the regular full dosage.

I have had many infections since i got GPA. Treating the many infections has resulted in allergies to several antibiotics which creates extra problems too. I also have diabetes which along with the GPA maintenance meds to suppress my immune system make me very vulnerable to infections. The last time two months ago I had sinus infection, bronchitis, pneumonia and sepsis which nearly killed me and required several days in the hospital with IV antibiotics and a couple weeks of oral ones afterward.

[Alysia]

I used Bactrim for a few years after dx in 2011, starting when I was taking Cytoxan. I was reading about it a lot on the forum, too. I also remember reading that in addition to being a prophylactic for infections like pneumonia, especially a specific kind that AIDS patients commonly get, it was also thought to help prevent relapses. I thought it was you, @Kirk, among others, maybe, who mentioned bacteria in the nose and sinuses, specifically MRSA, if I recall right, that could stimulate relapses, which maybe your doc had discussed with you, not sure. And that Bactrim DS, taken 3x per week, as most of us have who've taken it, could be effective in working against this bacteria and thereby working against relapses. It may be just a theory. But it could explain why it made your nose better, @Alysia (https://www.wegeners-granulomatosis.com/forum/member.php?u=7230), though it didn't prevent your relapses. And @Kirk, if you can still take Bactrim, you might consider it. And forgive me if it wasn't you who mentioned it.
As for me, when I had switched to methotrexate and eventually gotten a new rheumy, he said Bactrim was "overkill" with MTX, and unnecessary. I can't be sure he is right, but I seem to be doing OK without it over the last few years.

Sent from my MotoE2(4G-LTE) using Tapatalk

@anne (https://www.wegeners-granulomatosis.com/forum/member.php?u=82), you are right. we had a good discussion about the bactrim, in this thread, at page 4 there is some good info by @me2 (https://www.wegeners-granulomatosis.com/forum/member.php?u=842).

https://www.wegeners-granulomatosis.com/forum/threads/3912-Is-there-a-connection-between-RTX-and-lung-infections/page4?highlight=Bactrim

[annekat]

You have such a good memory, Alysia, and I guess I do, too. But you always follow it up by finding the thread where this is discussed. Thank you. I will take a look so that next time I'm more sure of what I'm talking about.

Sent from my MotoE2(4G-LTE) using Tapatalk

[annekat]

Alysia, I went back and read that entire thread and found it very interesting, though complicated and with a few differences in viewpoint. I have to correct myself on what I wrote above about Bactrim being seen, in addition to as a prophylactic for certain opportunistic lung infections, also as an agent for preventing relapses due to its ability to fight certain bacteria in the nose that can trigger relapses. It turns out that Kirk, me2, and his doc, discussed staphylococcus aureus as the offending bacteria that hangs out in many of our noses, of which MRSA is one type. So it would have been more accurate to cite the more general staph aureus in my comments. I'm sure you already know this from looking at the thread, but it might be of interest to others. So maybe I will go back and correct my terminology to be more inclusive.




Sent from my MotoE2(4G-LTE) using Tapatalk