Author Topic: neuropathies and rituxan  (Read 5302 times)

genko_b

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neuropathies and rituxan
« on: December 13, 2010, 07:11:06 PM »
I was at the rheumatologist's office today to talk about my worsening digestive issues, which both the GI doctor and the rheumy think is likely due to increasing neuropathy.

One idea the rheumy tossed out was to consider rituxan in place of the CellCept I've been on for several years, to see if it controls the nervous system involvement better. I'm nervous because the CellCept seems to be really helping the vestibular (balance) problems I had, and I don't want to lose ground. Also the rituxan side effects sound ghastly.

I've read through the comments on this forum on rituxan already. Is there anyone who can speak to rituxan and its effects on the digestive system neuropathy from personal experience? Thanks for your help.

Genko


rnathans

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Re: neuropathies and rituxan
« Reply #1 on: December 13, 2010, 07:39:23 PM »
I cannot comment on rituxan but I had severe gastroparesis which was helped dramatically by cytoxan. I went from a feeding tube to eating normally.

genko_b

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Re: neuropathies and rituxan
« Reply #2 on: December 13, 2010, 07:50:26 PM »
Thanks for the input.

CellCept is very similar to cytoxan in terms of what it does to the immune system, so perhaps I'd be much worse off without the CellCept. I'm just nervous about "jumping ship" to a drug that works so differently.

Genko

anita

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Re: neuropathies and rituxan
« Reply #3 on: December 14, 2010, 04:56:49 AM »
Genko,

Why not treat the GI neuropathy separately.  I'm thinking you're referring to gastroparesis (in which the nerves are not moving the GI system along like it should). If this is the case, there are other GOOD options before going to the big guns like rituxen (which can have some hefty side-effects).

Is this what you are referring to?  If not, then what type of GI neuro problems are you having?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

rnathans

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Re: neuropathies and rituxan
« Reply #4 on: December 14, 2010, 09:03:52 AM »
I was on cellcept before the cytoxan. The cellcept did not work on the gastroparesis. I also had tried the usual, more benign treatments for gastroparesis and it was not enough.

Cytoxan is a big gun and it should not be used lightly. But if your symptoms are severe and nothing else has worked you may need to consider it.

In my case I had lost so much weight and could not eat enough to maintain my weight at a healthy level. I actually had to have a feeding tube. But after six months of cytoxan the tube was out and by a year I was back to a healthy weight.

How severe are your symptoms and have you been tried on domperidone, assuming that you have a gastroparesis diagnosis.

irish

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Re: neuropathies and rituxan
« Reply #5 on: December 14, 2010, 12:47:44 PM »
navydad, Is there any reason that you didn't ask that last GI doc to do those studies that he mentioned. You have to be proactive to get some of this stuff done. Just curious but do you protest too much about having more tests cause they won't do them then---they are afraid of a lawsuit.

Also, to everyone in general, I want to reinforce that the big gun meds that caused some issues for some people do not always cause issues for everyone. It is sort of unfair to tell people that they are going to be so sick or whatever from a certain medication. I got horrible hives that could have been life threatening if they had involved my throat. I scared the doc and nurses big time. However, I do not ever tell anyone at my infusion clinic that I had the hives from that one particular product.

We are all different and we have to work with our doctors and with our own gut instinct as to what needs to be done to get us out of flair. If it works we are indeed blest. If we have issues with a med and need to stop and try another one then that is just the way the cookie crumbles and we go on and try again. Thank God for these docs who will take the time to think things through and work with us. Irish ;D

anita

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Re: neuropathies and rituxan
« Reply #6 on: December 14, 2010, 02:37:30 PM »
Navydad,

The test for gastroparesis. IS "simple".  It's an empty test...non-invasive.  Just eat some scrambled eggs with a little contrast mixed in (you cannot taste it) and lay on a table for a couple hours to scan the movement.  That's it!!

heck, your GP could order it. 

Genko

I have yet to see anything that Rituxan works on gastroparesis...or cellcept for that matter.  Neuro GI problems do not seem to be fixed with immune suppressants or modulators.  It's a matter of motility drugs (like domperidone) or botox injections.  worst case could include gastric pacing device.

 
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

rnathans

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Re: neuropathies and rituxan
« Reply #7 on: December 14, 2010, 03:52:39 PM »
Anita, I can only describe my experience but I was on domperidone and tried botox injections. My docs were very proactive about treating the gastroparesis and I still lost almost 70 pounds. I went from overweight to emaciated. I have no doubt that the cytoxan saved my life and the quality of my life. I am not pushing cytoxan by any means but the docs who suggested it had seen it work in Sjogrens patients with gastroparesis before and that is why they prescribed it for me. It should absolutely not a first line treatment but for severe illness than will not respond to more benign treatments it should not be dismissed either.

I hope I am not coming on too strong it is just that I was so sick and this did help me.

Ruth

genko_b

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Re: neuropathies and rituxan
« Reply #8 on: December 14, 2010, 05:18:03 PM »
Thanks to everyone for your input. I should have phrased my question more clearly.

I do not have a diagnosis of gastroparesis. It is more complicated than that. They are looking at rituxan because I have a whole range of neuropathies/nervous system issues, as well as other non-nervous system issues, that have responded very well to the CellCept for years and now are beginning to get worse again.

Most notably right now I'm having digestive difficulties because no one part of the digestive system is in synch, apparently, with any of the others. But this is not for gastroparesis alone. I'm certainly not at the place you describe, Ruth. That must have been very difficult, painful and scary. And cytoxan is another option for me.

My doctor is talking about domperidone for the occasional bouts of gastroparesis, so we are covered on that.

I feel very supported by everyone's willingness to contribute their experience. And thank you Irish for the reminder to us all that we are each unique and need to work long-term with our own doctor to come up with a regime that works for our particular body. My doctor is excellent and has been quite frank about the risks of rituxan, as well as sharing the experience of his other Sjogren's patients who are on rituxan.

Take care,

Genko

navydad

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Re: neuropathies and rituxan
« Reply #9 on: December 15, 2010, 01:47:06 PM »
I was wrong,, Rituxin caused ME problems,, it may not for you,, I hope if you do get it,, its a good med,, I can only say for ME,, it made me sick,, sent me into anaphaltic shock,, throat closed up,, one minute talkking to my wife, next,, body covered with hives and throat closing up,, sme thing I get when I get stung by a bee,,

Irish,, Respectfully,, I did ask about the mobility testing when I did see teh GI doctor, HE said,, lets do these blood test first and a fecal study,, and he said also,, Lets put the mobility studies on the back burner for now,, I got a very nice letter from him describing my visit,, he did mention gastroparesis as a possibility,, but has decided against empiricial treatement for the time being,, what ever that means,, he also stated that some of this testing is very expensive, (I dont care I;m not paying for it), and insurnce wont cover it,, well I do pay for it to the tune of a COBRA payment every month, if I had Medicare,, I am pretty sure I could go anywhere in the country and seek treatment with the exception of Mayo which I dont think Mayo takes,,

You see,, I dont like peole Pi**ing down my back and telling me its raining,, and like you,, thats what its like here now it might be this,, or it might be that,, you said you prob wont get treatment in Minnesota again, its getting that way in Pa,,, When Mayo was offered to me,, we scrapped up our pennies and dimes and went,, you know that story,,

When I got back, my rheummy calls me and screams,, no one told me you were going to Mayo,, hmm,, didnt kow it was my responsibility to do it since your office is right down the hall,, and you two talk I guess occasionally since you refer to each others notes,,, but I think what ticked the rheummy the worst was when he told me, we wanted you to go to the SS clinic in Philly, I told him at the time we could not afford it,, it was a time when we were trying to keep from living under a bridge, and what is philly going to offer me,, same stuff we have here,, I cant hold a gun to these peoples heads to do the proper testing,, I guess my next move is to ophe phone booko Physicians,, and play a game of pin the tail on the doctor and ry that route,

I;m happy you have doctors helping you,, I am happy you have some kind of network,, I respect your carreer as a nurse,, but understand this,, I am pretty much alone in my struggle,I GET NO HELP no one screams onmy behalf,,, I am tired of playing phone tag,, I am tired of getting chopped up piece by piece,,, you want to do the easy test,, have at it,, but i;m tired of losing little slices of my body to sastify some test that prob will come up normal,, no I dont protest to more testing,, I want it done,, not just themore intrusive ones, I have no surral nerve left,,

I havent been sick since i was 20,,, I have been sick since I have been 51,, been through your heck,, in your head,, nothing worng,, little psych stay might help,,, heck maybe some ECT to knock this out of you,,, maybe I should just get on with life,, but theres this little problem,, I like to do things that require the use of my hands and arms,, Ilike to hunt,, found out I cant carry a gun,, let alone hold it up,, I like to fish,, oh darn,, that requires casting and winding a line back in,,I HAD a patient advocate from UPMC,,, she called occasionally,, asked how I was doing,,, I tried to be nice,, and I eventually asked her exactly what does a advocate do,, well I guess involves listening to there list of people they are required to call in a 8 hour day,, and at teh end of the conversation,, tll you good luck,, I could do that,, talk about working from home,,,