Hey guys,

I was talking to a lady with MG who mentioned a treatment that I'd never heard of, but is sorta similar to chemotherapy. Check out this link;

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

For those of you who feel that your MG is refractory or difficult to cope with or control, would you consider this? I don't know...It seems very tempting to me...It's 4-days of hell for a possible cure...The 'cure' rates are something like 50% for all the autoimmune diseases it's used for, with many others having a disease that's much more easy to control...

How do you guys feel about this? It says that many MG patients can get rid of their symptoms for like 10-years...Doesn't sound too shabby to me, but it's risky...I wonder what it's like for thymectomized people...Can they still make T-cells properly without a thymus after having the immune system wiped out?

Nicky

Nicky,

sorry that I don't have much time to adress all your questions (the antibodies and the form of therapy).

I will just try to answer briefly. the procedure you are reffering to is called- autologus stem cell transplant. a few years ago, it seemed a very promising modality of therapy for refractory autoimmune disease, but it has gradually lost favor.

there are both short and long term risks in this procedure, and I think that your concern of having it following a thymectomy are well justified. it may likely effect the reconstitution of the immune system, putting you at increased risk for infectious complications. although, it may be adventageous in achieving remission. ( I have to think about it more, in order to give you a better answer).

one of the reasons that it lost favor, is the very good results with other modes of treatment, including rituximab.

alice

Thanks, Alice.

You had mentioned in another post anti-ryanodine antibodies, which I'd come across in the past, but had forgotten about...I feel like I prolly have these because of my continuous bulbar sx (and thymoma) which seem to be resistant to prednisone....I'm supposed to start Imuran, but I have a feeling that it wont work because it works in the same way prednisone does (at least in terms of the type of suppression of the immune system it does)...

I guess I should get tested before assuming I have them, but I feel pretty certain...I wonder what treatments is the best for this type of antibody...i'm attracted to the idea of making a new immune system from scratch because I don't have to be on the medication for months and then find that it hasn't worked, plus it might get rid of the other autoantibodies I have permanently too (anti-dsdna, ana, thyroid)...At least I'll know right away, as opposed to 6-12 months later...It's so hard to know what to do...

I've also heard that rituximab might not work for my type either (achr positive, with severe bulbar sx)...

Thanks for taking the time to respond- I appreciate it!
Nicky

No, I don't think "I" would try it. Chemo scares me and I wouldn't do it unless I was full of cancer, but that is just me.

I remember years ago a Dr. mentioned something like this to me {may have even been this, I don't remember exactly} but he told me that a possible side effect was cancer and I look at him like he was on drugs and said, thanks but no thanks.

Having been in remission before, I can say it was wonderful but not worth taking a chance on the unknown.

I know what you mean, Joan...The cancer thing bothers me too, but it seems that all the immunosuppresants carry a risk of cancer...I was reading a message board for side-effects of Imuran, and most of the people were complaining about skin cancer, a sudden influx warts, really bad infections, jaundice- and that one is a less strong immunosuppresant compared to the others too...*sigh*..But then again, I figure that majority of the people who'd post on that site were those who experienced bad side-effects, so the risk is prolly still quite low...

Joan...What were your symptoms like before you went into remission...Are your current sx similar to the ones you experienced when you first got MG? Also, was your thymus heperplastic?

Thanks for your input!
Nicky

When I first started with MG it was double vision and extreme weakness in my hands, arms and neck. I had just had a baby when it got really bad and I couldn't hold the baby bottle or hold a pen to write a check.

My thymus was spread throughout my chest like fatty tissue and the Dr said he "scraped" my organs to remove it but said he most likely didn't get it all.

My remission was great! No meds, no weakness, it was heaven!

Now I am out of remission and my double vision is back, arm weakness, hands, and now legs and lungs. My legs and lungs had never been weak before so that is new for me. My hands are not as severe as before, so that is good.

Only med I take is the mestinon and even then I only take it when my eyes are so bad I can't see or when my breathing starts getting worse. I have to take benadryl even with the mestinon because I break out in itchy bumps and my tongue swells a bit and my lungs seems to fill with fluid, have to keep coughing. But it is better than nothing, as I am super sensitive to medications.

Hi Joanmarie,

Thanks for the info.. That must have been so tough having just had a baby, but your story is so inspirational- you truly are proof that drug-free remission is possible! And it came just in time for you to care for your baby- that's such a blessing! I wish that we could study you! j/k

I have the hand weakness too- I've had it for years, and I just talked to my neuro. on the phone about it. I had some testing done on my arms, and it showed some denervation in the muscles that control finger flexion. He said that MG can do that sometimes...Do you get finger-drop? I get it in the last digits on each hand after typing for a while, and also after cleaning...I also get hand-drop sometimes too...I have a lot of fluid-retention in my fingers as well, with really red tips, and sometimes bluish moons in my fingernails (my rheumy says it's from Raynaud's)...

Sorry that the MG is back, but I'm glad that Mestinon controls it to some degree, but that's terrible that you have the allergy to it! Benedryl knocks me right out- I can't take it at all...I was almost hallucinating when I took it in the hospital for the IViG, so that's a bummer that you need it in order to take the mestinon. Have you tried any of the other types of cholinergics? There are a few other ones...

I think that I asked you this before, but have you considered having another thymectomy? Maybe the pieces that were left over have grown and become active again..

The only muscles that seem to be unaffected by my MG are my legs and eyes...I do have problems with stairs a tiny bit, but I think it's from being really outta shape from sitting at this comp. all the time! lol...My eyes are sorta affected (mainly not being able to close them all the way), but it's negligable compared to the other areas...

Anyway, my neuro. said that we're definately not going to try anything too toxic for now (like the revimmune) until we see if the less-toxic drugs will work...I just hope that I don't get warts and stuff and oh yeah, that it works!

Nicky

Nicky,

LOL on the study me statement, my Dr. said I was a strange one indeed

I had a chest C.T.Scan done a few months ago and when I see my Dr again I am going to ask him to really look at it again. But to be honest, I just don't want any more surgery

I am greatful for the years I had being in remission and although at times I get mad at the MG, I can live with it. I will not try any other medication {because I am super sensitive} it is not worth the risk for me.

the pathophysiology of MG is much more complicated then it seems. it is very far from being the best understood autoimmune disease, and autoimmunity is not well understood in general.

we tend to think of autoimmune disease as one abnormal antibody, causing one problem, but in reality this is probably not the case. any immune process is polyclonal and not monoclonal (unless it is a rare type of cancer, in which there is over-production of one single antibody).

further more, any immune process involves both antibody producing cells and other immune cells, that "work" together to eliminate the invading pathogen. (this is what the immune system is basically meant for).

our tests are very limited in the antibodies they can detect. this does not mean that there aren't others that we just don't test for.

what caused the immune system to recognize self as non-self, is a major unsolved question, but it probably has to do with some (probably genetic) abnormalities , either in protein related to the immune system (mainly those involved in recognition of antigens), or in proteins related to the "attacked" cells.

this is one of the concerns with vaccines. as they lead to a relatively less controlled activation of the immune system, and may cause on-going immune dysregulation in patients who are prone to that. a relatively rare. but real complication.

I am not aware of any information regarding subsets of patients that do not respond to rituximab. overall there is very sparse data regarding this treatment in MG. I am not aware of any study (double blind or even open lable) that assessed this mode of treatment in MG.

I would not be too attracted to the idea of rebuilding your immune system. it sounds very romantic, but in reality it means a week or more of hospitalization in isolation. and a fairly long recovery to what you were before. with a significant infectious risk for more then a year, and possibly even more in someone who has had a thymectomy.

so your neuro's reluctance to do that, sounds very reasonable to me.

hope this helps and is not just more confusing,

alice