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

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[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.

[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
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.

[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.

[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

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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.


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[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.

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