Rituxan - didn't work well for MPA

[mrtmeo]

I agree that it sounds like a good idea to be on the lookout for kidney issues for wegs who are in remission, its so easy to not notice anything even though there would be a problem with the kidneys. I didn't experience any symptoms, and I guess I was just lucky that I got my blood and urine tested this summer as it apperars the symptom I had wasn't even weg's related and still I was hospitalised a week after the results.

I posted a link to an article where a doc recommended wegs patients to use these dip sticks to measure their urine. I did ask a rheumy and my neph about it, but they weren't convinced its a great idea since those tests aren't too reliable. For me I guess they will do regular urine tests now, and besides with blood and protein in my urine those sticks would be positive for me. But I guess for wegs whose kidneys are working fine it might be good to check monthly and then ask for lab tests if the sticks show positive results.



I still am, guess its going to be my fifth infusion next week. They were talking about 6-10 infusions when I was hospitalized, but the latest I heard it would be 6-8 and then a switch to Aza.

How come your mom has such low pred dose? 8mg sounds very low. If she was DX'd in June I take it she has been on pred for less than 5 months.. When I relapsed in July I first got 1g IV's for three days and 80mg pred, which was slowly tapered so that I'm now on 30mg. Guess I will be on 10mg in december, but they wrote that they are using a faster tapering as I've responded well to the treatments, so just curious why your mom seems to be tapered fast even though it didn't sound like the other meds were helping her that much. Last year I was dx'd in August and I think I was still taking 10mg in May even though I felt great. Great if she doesn't need to take much, but just wondering as it sounds like a very low dose.

Her Dr took her from 40mg pred down to 20mg and then, 15 days later, took her down to 10mg because it was causing high bp, sugar and osteoporosis. Originally, he was going to start tapering right after the rtx (and put on Imuran) and cut 5mg per month, but didn't do this and wanted her done with pred after month 6. She couldn't tolerate the Imuran, so now, she is on Mofetil.

[drz]

The dipstick urine tests are just another monitoring device to increase chances of early detection. If I should get an abnormal reading on one I would get a regular full lab work of blood analysis and urinalysis right away to verify if their is really a problem. Otherwise I would just get my regular monthly labs.

[mrtmeo]

Update:
Talked with a rheumy that consults with Carol Langford and he was very surprised that my mom did not respond well to the rituximab.
He says that the current treatments he uses is 2 infusions, 2 weeks apart instead of the 4 infusions, 1 week apart.
I really think the reason my mom has not responded well is due to her tapering off a benzodiazepine which probably triggered (cytokine storms) the vasculitis.

I sure hope the mofetil works.
It looks like the Rtx will end up the treatment of choice.

[annekat]

I'm just so glad you are now with a rheumy who sounds like he knows vasculitis and its treatment and who consults with one of the best. I hope your mom will show great improvement now under his care.

[mrtmeo]

I'm just so glad you are now with a rheumy who sounds like he knows vasculitis and its treatment and who consults with one of the best. I hope your mom will show great improvement now under his care.

Thanks Anne.
At this point, I have lost all hope.
Her proteinuria only showed improvement the week after starting Losartan, but went up again a week later.
One Nephrologist said that the kidneys can go into auto destruct mode until they completely fail.

Looking at dialysis doesn't show much hope either when the proteinuria is high because it keeps going up and nutrition goes way down.
I can't give her my kidney unless she goes into remission and passes a lung function test for surgery.

When I asked the rheumy if the mofetil would correct the proteinuria, he said that proteinuria is very tricky.
I took it as, it won't help.
I don't understand the mechanism that causes the proteinuria.

I tried adding BCAA's (Branch Chained Amino Acids) to her diet and it greatly increased her albumin, hemoglobin and hemocrit.
However, her proteinuria is worse which I think is kidney hyperfiltration and may reverse now that I stopped the BCAA's.

[annekat]

Blake, I'm so sorry you have come to the point of feeling so hopeless. I wish the new rheumy could offer more encouragement. I think you did say that more RTX appeared to be indicated, and I'll be interested to hear how that goes if it happens. But I do understand the kidneys can reach a point of no return. You know much more about the technical aspects of all this, and unfortunately I don't currently have time to research some of the terminology you used. I can only hope that things aren't as bad as they seem and there is some chance that they will improve. Did the rheumy say what the next step would be and when?

[mrtmeo]

Blake, I'm so sorry you have come to the point of feeling so hopeless. I wish the new rheumy could offer more encouragement. I think you did say that more RTX appeared to be indicated, and I'll be interested to hear how that goes if it happens. But I do understand the kidneys can reach a point of no return. You know much more about the technical aspects of all this, and unfortunately I don't currently have time to research some of the terminology you used. I can only hope that things aren't as bad as they seem and there is some chance that they will improve. Did the rheumy say what the next step would be and when?

Hi Anne,
I suppose there is always hope, but I am so discouraged by my mom's lack of response to treatments and the failing in some of her medical care.
There is the possibility that her kidneys could heal to a point that is better, but there is always a flare that can drop the function quickly.
I was hoping her kidney function would have gone at least to 3rd stage, so that she has a little chance if a flare comes along again.
If the protein dumping doesn't resolve, she will probably end up in end stage renal failure anyway.

If you are wondering what hyperfiltration is, it is when normal kidneys will dump excess protein due to too high a protein diet.
This is a way the kidneys adapt and doesn't harm the kidneys.
The kidneys will go back to zero protein when the person lowers their protein intake.
This happens alot with body builders.

[mrtmeo]

For MPA, I am beginning to think that doing at least 2 months cytoxan and then a maintenance seems more effective.
My mom's kidney function responded to the single boulus dose of cytoxan she got 2 weeks before the rituxan.
Once she got on the rituxan, she went into a big flare that lasted months.
Perhaps, rituxan for maintenance, but I still have not found a single MPA patient that went into remission using rituxan first.

For weg's, rituxan looks very favorable for induction of remission and even better for maintenance.
Just my thoughts.

[annekat]

Hmm, maybe it's time for another round of both CTX and RTX for your mom. I think I've heard that even for GPA patients, RTX doesn't always work well the first time. For others, I know it works great, though it may take a few months. I guess you have another appt. with her rheumy before too long and it will be interesting to hear what he thinks of all this. I hope she is still feeling a little better these days than she was for awhile.

[mrtmeo]

I will discuss a round of ctx with the rheumy, but not sure if he would do it.
Her lymphocytes are climbing, so I think the rtx is wearing off.
The rtx never really improved the creatinine except for .1.
2 weeks after the one ctx treatment and a blood transfusion her creatinine went from 3.3 down to 1.9.
After this, she was put on rtx and her creatinine went up and down but never below 1.8.
On the mofetil, she is down to 1.8, so far and the anemia seems to have some improvement.
She is also getting acupuncture and her acupuncture dr said that anemia can go up and down until resolving.
Getting the right treatment is a crap shoot.
It sure seems common that most people go into remission within the 2nd -3rd month of treatment, but alot of damage can happen during this time if they don't.

She needs another anca test to see if she is negative, yet.
At least, if she was negative, I would know she was healing.