[CowgirlUp]

Hi,

I just found this site and I'm really hoping I can find some support here. I've had MG for about 2 years, and I have yet to meet anyone else with this disease. I often feel very isolated and alone. Right now I'm on Cellcept and doing plasma pharesis at least once a week. I had a thymectomy in Oct of 2007 because I had a tumor. I've also tried Mestinon which didn't do anything except make me drool, and IVIG which made me feel quite ill and didn't really help. The only thing that has really helped is the plasma pharesis, but I'm still symptomatic and am now considered to have refractory MG. Now the docs want me to try Rituxan, which scares me to death because I can't find much research on it and what I've found indicates that there are some potentially fatal side effects. Does anyone here know anything about rituxan? Do any of you know of any research that indicates the success rate with sero-negative MG and/or what the percentages are for side effects? Any info anyone has would be greatly appreciated. And if I can provide support to anyone else, please feel free to contact me.

Thanks for reading. I appreciate you taking the time. I wish you all good health.

MK

[Joanmarie63]

Hello and welcome, I am glad you found us. I have been DXed for 19 years now and have learned more from this site than from any of my Dr's.

The only medication I use is the mestinon as I am super sensitive to all meds. I had plasma exchange 19 years ago but thats it. I was in remission for many years and only recently came out of it. The Doctors around here don't want to do the plasma exchange and since I can't take the other meds I just "live" with it. Everyone seems to be effected differently with their MG and we all learn what we can and cannot do.

I hope you find answers and the support you need here, I know I do.

[ewizabeth]

Welcome to NeuroTalk MK!


There are lots of nice folks here and great information too. I'm glad you found us!

[Nicknerd]

Welcome, cowgirl!

I was diagnosed with MG in February of this year. I also had a thymoma. Seems like the MG might be harder to keep under control when a thymoma is involved, because I'm finding that my symptoms are still pretty severe unless I have a plasma exchange (which I was having a full round of almost everything month). Maybe it's because thymomatous MG almost always is bulbar to some degree that it's so refractory (everyone I've come across so far who had a thymoma has had prominent bulbar symptoms). By the way, my ocular weakness is minimal, don't know if it's the same for you. I had a thymectomy in July, and was started on prednisone at the end of July because my MG seemed to have gotten a bit worst. When I was at 80 mgs, I was doing okay, MG-wise, but I had to reduce my dosage as I was becoming insulin-resistant, which made the MG monster creep back.

I'm supposed to be starting imuran, but I've been too tired to get the preliminary blood tests, plus I'm a bit apprehensive at being on so many medications (these medicines are brutal, aren't they?). Mestinon only seems to work for me after I've had plasma exchanges, otherwise, it's like I'm swallowing a Flintstone vitamin (minus the deliciousness and cool colours lol).

Have you tried prednisone/Imuran yet? I'm sure you prolly have.

Anyway, I understand your angst. This is a very good site, with lots of informative and caring people.

Btw, I read that it's very unusual to have seronegative MG when a thymoma is involved. Maybe this is why it's so difficult to treat since mestinon might not help depending on what antibodies are at work.

I've heard of Ritixub, but I've never tried it and don't know much about it. I'm going for a plasma exchange today. When I get back, I'll look into it.

Anyway, talk to you soon, and know that you're not alone anymore!
Nicky

[suev]

Welcome MK!

I'm one of the lucky ones who does respond to Mestinon and that is all that I am taking. But there are lots of folks in the forum who will be able to help much more than I.

Don't give up on the site if there isn't a lot of chatter over the next few weeks. Between the Holidays and the fact that we all get wiped out really fast with activity, it is apt to be more quiet than usual here for a bit.

Sue

[alice md]

Hi,

first, given the choice I would much preffer rituximab to cellcept.

I have not recieved it yet (altough my neuro is considering it at this point), but have given it to quite a few patients, and it is overall very well tolerated-short and long term, although it may cause an actue hypersensitivity reaction.

no immunosupressive treatment is "nice" or free of side effects. and there have been relatively rare cases of serious infections described in almost all of them, but most patients don't develop such complications.

weekly plasmapharesis is not devoid of potential complications, nor is cellcept.

it is interesting that you have seronegative MG and a thymoma.

there are studies that show that some patients with thymoma, who are seropositive also have anti-ryanodine antibodies, and those patients do less well and have a more severe course, then those that don't .

there is a debate among the neuros if those antibodies are involved or not in the pathogenesis of the illness. I am surprised that no one tried to look for them in your case.

also, there is a study that showed that patients with anti-ryanodine antibodies have a good response to FK506/tacrolimus as it has a direct effect on the ryanodine receptor.

quite complicated, I know, but this is the way this illness is-quite complicated.

don't know if any of this info. can be useful to you, but possibly some at least may.

alice

[jana]

Originally Posted by alice md

Hi,

first, given the choice I would much preffer rituximab to cellcept.

I have not recieved it yet (altough my neuro is considering it at this point), but have given it to quite a few patients, and it is overall very well tolerated-short and long term, although it may cause an actue hypersensitivity reaction.

no immunosupressive treatment is "nice" or free of side effects. and there have been relatively rare cases of serious infections described in almost all of them, but most patients don't develop such complications.

weekly plasmapharesis is not devoid of potential complications, nor is cellcept.

it is interesting that you have seronegative MG and a thymoma.

there are studies that show that some patients with thymoma, who are seropositive also have anti-ryanodine antibodies, and those patients do less well and have a more severe course, then those that don't .

there is a debate among the neuros if those antibodies are involved or not in the pathogenesis of the illness. I am surprised that no one tried to look for them in your case.

also, there is a study that showed that patients with anti-ryanodine antibodies have a good response to FK506/tacrolimus as it has a direct effect on the ryanodine receptor.

quite complicated, I know, but this is the way this illness is-quite complicated.

don't know if any of this info. can be useful to you, but possibly some at least may.

alice

Alice, THANK YOU!! Cellcept, quite frankly, has always scared me. Both Cellcept and Rituxan carry the risk of PML -- but, Cellcept also carries the risk of lymphoma, skin cancer, and kidney damage.

cowgirl, plasmapheresis "killed" me -- so, there are "risks" everywhere. *sigh*

My MG specialist keeps Rituxan on the "back burner" for me -- just in case. He says that it offers the POSSIBILITY of remission -- maybe even PERMANENT remission. A lady in one of my other groups has been taking it for a couple of months -- so far, so good. She has strength that she couldn't even dream of a year ago.

Right now, I am able to "manage" with Mestinon and lifestyle adjustments. Like Joan, other treatments and meds are not an option.

[CowgirlUp]

Hi,

Thanks for the interesting info--it makes me feel better about the Rituxan. I didn't actually have a thymoma. I had some kind of idiopathic tumor on my thymus. I was told that it was unusual and the pathologist actually did some kind of presentation on it. I don't know how that differs in terms of its effects on the MG. I was dx'd based on the clinical sx as opposed to the serology. The neuro thought that nothing else explained my sx, and since I did respond to the plasma pharesis that this was additional evidence. It's been very frustrating. I'll have to ask the neuro about the other antibody you mention.

Thanks again,
MK

Originally Posted by alice md

Hi,

first, given the choice I would much preffer rituximab to cellcept.

I have not recieved it yet (altough my neuro is considering it at this point), but have given it to quite a few patients, and it is overall very well tolerated-short and long term, although it may cause an actue hypersensitivity reaction.

no immunosupressive treatment is "nice" or free of side effects. and there have been relatively rare cases of serious infections described in almost all of them, but most patients don't develop such complications.

weekly plasmapharesis is not devoid of potential complications, nor is cellcept.

it is interesting that you have seronegative MG and a thymoma.

there are studies that show that some patients with thymoma, who are seropositive also have anti-ryanodine antibodies, and those patients do less well and have a more severe course, then those that don't .

there is a debate among the neuros if those antibodies are involved or not in the pathogenesis of the illness. I am surprised that no one tried to look for them in your case.

also, there is a study that showed that patients with anti-ryanodine antibodies have a good response to FK506/tacrolimus as it has a direct effect on the ryanodine receptor.

quite complicated, I know, but this is the way this illness is-quite complicated.

don't know if any of this info. can be useful to you, but possibly some at least may.

alice

[CowgirlUp]

Thanks so much to all of you who have replied. I have already learned things from your posts that I didn't know before! Finally! Some people who know what I'm going through . . .

I really appreciate your warmth and willingness to share your information with me. That means a lot. I will check into some of the things you've told me. You've made me feel somewhat better about the Rituxan. I have not had any problems with the Cellcept. It just hasn't worked well. And yes, I do have bulbar symptoms and don't really have much in the way of ocular sx as one of you mentioned. I do have weakness in my arms and legs as well. I especially have problems with breathing but have fortunately never gone into full crisis. I used to choke a lot as well, but both my breathing and choking have gotten better to some extent since my surgery. But I'm just finding it really difficult to work some days. My sx are so variable from day to day and it's really frustrating. Especially since no one has ever heard of what I have or gets it.

I have not tried Imuran or steroids. Imuran has not been given as an option yet, and I have other problems that the steroids would likely exacerbate so I'm not willing to try them yet--I'm also relatively young (47) which is another reason I don't want to have to take steroids--I can only imagine what decades of them would do to my body!

I have had some problems with the p.p.--three times I've gone into life threatening citrate toxicity, but I think we've solved that problem pretty well. It's been the only thing that has helped. I used to walk with a cane and had so much trouble breathing and now I can walk relatively well.

Again, thanks so much to all of you. Your kindness and experiences have made me more hopeful. If I can help any of you, please do feel free to contact me.

MK

[alice md]

Originally Posted by CowgirlUp

Thanks so much to all of you who have replied. I have already learned things from your posts that I didn't know before! Finally! Some people who know what I'm going through . . .

I really appreciate your warmth and willingness to share your information with me. That means a lot. I will check into some of the things you've told me. You've made me feel somewhat better about the Rituxan. I have not had any problems with the Cellcept. It just hasn't worked well. And yes, I do have bulbar symptoms and don't really have much in the way of ocular sx as one of you mentioned. I do have weakness in my arms and legs as well. I especially have problems with breathing but have fortunately never gone into full crisis. I used to choke a lot as well, but both my breathing and choking have gotten better to some extent since my surgery. But I'm just finding it really difficult to work some days. My sx are so variable from day to day and it's really frustrating. Especially since no one has ever heard of what I have or gets it.

I have not tried Imuran or steroids. Imuran has not been given as an option yet, and I have other problems that the steroids would likely exacerbate so I'm not willing to try them yet--I'm also relatively young (47) which is another reason I don't want to have to take steroids--I can only imagine what decades of them would do to my body!

I have had some problems with the p.p.--three times I've gone into life threatening citrate toxicity, but I think we've solved that problem pretty well. It's been the only thing that has helped. I used to walk with a cane and had so much trouble breathing and now I can walk relatively well.

Again, thanks so much to all of you. Your kindness and experiences have made me more hopeful. If I can help any of you, please do feel free to contact me.

MK

hope you don't mind me asking a few questions.

what do you mean by citrate toxicity, and how did they manage it?

when you say that they diagnosed your illness clinically, do you mean that you also had a diagnostic EMG?

the reason I am asking those questions is that I am interested in finding out if there is a subgroup of patients that seem to have their antibodies directed towards other proteins.

if you did not have a thymoma, I am not sure that the antibodies I have mentioned are relevant.

thanks,

alice