[scrubbs]

It sounds like you, Juanitad are receiving a lower dose and less intensive treatment than 4-eyes had and you mentioned in several cases similar to yours. How would you define your muscle weakness and fatigue? 4-eyes, you mentioned after 1 year you can go to work and to the gym.

I have an appointment with my Neuro in a couple of weeks and would like to discuss this with him (Cytoxan) but only if my condition is in some way similar to the two of you. I am 69 years old.

I also am on IGIV, 2 days every 6 weeks. Down from 2 treatments a month. Mestinon 5x60 mg.daily. Prednisone, 30 mg. EOD down from 120 mg. EOD, but I do not know if my symptoms are as severe as both of you? I’ll explain.

In June of 08 I started having double vision and ptosis.

I was diagnosed with MG in December of 08. Symptoms were still serious ptosis and double vision. Less serious problems chewing, swallowing and a trouble walking. In January, 09.I started having much more trouble walking and had my first and only crisis. Double vision and ptosis were virtually gone when I started Prednisone. 2009 and 2010 were so miserable I could not believe what was happening to me. I had so much muscle fatigue and I spent days on end that I could barely get out of my chair or bed. When I crashed like that it would be for 3 to 5 days at a time and it would happen 3 to 4 times a month.
My face swelling went down I believe with the prednisone reduction. ??

The rest of the time on better daysI could get out of the house and depending on how fatigued I was and on those days do more and able to do some small jobs round the house even though my muscle coordination was real awkward making everything difficult and resulting in more fatigue and recovery time.

For the last 1 ½ years my neuro consideres me stabilized. I crash very seldom and then usually only for one day. I am still able to do small jobs around the house and it still puts me down but I recover faster with rest. Also I am getting weaker. Not able to lift as much as I could on a good day before being "stabilized" because I am still not able to build muscle. (I was in really good physical condition when I got sick.) I hope you guys know what I am talking about. The difference between fatigue and weakness. I now almost always feel good at rest when I haven’t exerted myself. At times I have a little shortness of breath at rest and always with exertion. I am a lot more confident driving now because my reflexes are better. I am walking better now but sometimes it seems like my legs and hip or core muscles are not in sink causing a slightly unusual gait. And then there are the side effects of the meds.

I am grateful for my improvement but with my muscles getting weaker, I know there is no chance for improvement with exercise. (I try.)

I am not asking for any advice but would just just like to know if either of you were in much worse condition than I am right now. And that is why you decided to try Cytoxan.

Cowgirlup, you posted you were starting Cytoxan on 5/11/11. In January you posted you were doing Plasmapheresis. Did you change your mind about Cytoxan?

Thanks a lot;

Scrubbs

[4-eyes]

Hi Scrubbs,

I will try and answer your questions. I had the high dose cytoxan (reboot) in November of 2010. Now, almost 2 years later I continue to do well. I've not had any significant flares at all.

It was just about 2 years ago this month that I actively began thinking about doing the reboot. I was in bad shape. I was emaciated from the dysphagia, and many days I had to work all day to get a couple of glasses of water into me. I was unable to converse more than a couple of sentences before becoming unintelligable. Double vision was almost constant and extremely severe, and I was only comfortable driving to and from school to get my daughter, to the grocery, etc (with one eye patched--so scary at times!). I was in bed for the night by 6:30 in the evening (with 1 or 2 naps during the day). I was deeply depressed and on the verge of either giving up or actively attempting to end my life. It wasn't hard for my neuro to agree to the reboot when I told her about that!

The whole reboot process itself was brutal, and I had to be "healthy enough" to do it. Lucky for me, I was pretty darn healthy other than the MG. With your age, Scrubbs, I don't know how many doctors would be willing to do a full on reboot. I've heard whisperings of 65 being the cut off age for most procedures like this.

My neuro did offer me, as an alternative, the low dose, once a month infusion. I decided, for me, I should "go big or go home!" That decision came in large part, to the fact that my neuro is over 2 hours from me, and that would be difficult to coordinate month after month. With the reboot I had a month of frequent trips to the onco at the same center and then I was done. My dh took "family leave" to care for me. If low dose had been available locally, I *might* have tried that.

Hope this helps. From your description, it does sound like you could benefit from something other than what you are using now. Your functional quality of life does not sound too fun, and I'm so sorry about that. As you know, being "stable" and "having a satisfying life" are two completely different things!

Let me know if you need more info! Good luck on your new journey!

[scrubbs]

4-eyes

I hope I get a reply from Juanitad and maybe cowgirlup but I want to thank you so much for your reply. I am sure I will bring it up to my Neuro.

Thanks again;

scrubbs

[Juanitad]

Hi Scrubbs - The suggestion that I try Cytoxan came from a neuro at Vanderbilt who I went to for a second opinion on treatment. She referenced the following study "http://www.ncbi.nlm.nih.gov/pubmed/12115946" when she recommended the Cytoxan. She said she has several mg (or other autoimmune diseases) patients using the Cytoxan and the majority of them have seen improvement.

I was diag in 2000 at age 50 and am now 62. I had a thymectomy in 2005. I have been on IVIG in some form or fashion since 2005 and, on Cellcept for 12 years, 5-6 mestion/day and Timespan at night. I have also been on prednison since 2005 and everytime I get close to weaning off it, my breathing tanks and I end up in ICU on a vent. I have been getting weaker and weaker for the last 3 years and finally asked my neuro how he felt about me getting a 2nd opinion. He was all for it because he was getting frustrated for me. I also wear a patch at all times because I have had dv for about 2-1/2 years.

I get my cytoxan treatment from a oncologist at his infusion center. I went every 4 weeks for 6 treatments. My last treatment was 2 weeks ago. We started at a low dose, but he increased it by 25% each treatment. As the dosage has increased, the side affects have increased. I was nauseous for 6 days after the last treatment (even with zofran) and I don't think I want to go any higher. My understanding is that I will receive a treatment every 8 weeks for the next 6 months and at the end of that time, a decision will be made if we go another 6 months.

I stopped the Cellcept completely, am down 10/EOD predison and 1-2 mestinon/day. For me the mestinon reduction was a quality of life issue also since I had all the gi side affects from it and couldn't leave the house for about 2 hours after I took it and I still had to know where all the restrooms were everywhere I went! Now with only 1-2/day, I don't have to worry.

After the nausea wears off from the Cytoxan treatment, I have a lot more energy and enjoy my life more than I have for several years. I have gone back to sewing and quilting which I haven't been able to do for the last 3 years.

All in all, so far I am please with the Cytoxan and the results.

Good luck with your decision! Hope you find the right answer for you

[4-eyes]

Scrubbs,

I also know someone who used oral cytoxan, a daily dose. She had great results, although the cumulative damage to the bladder is a concern with that. However, that is another option.

[scrubbs]

I would like to thank you both for your replies.

I did not know there was oral cytoxan. I did look it up after your post and saw that beside cancer, it is also used as a treatment for MS. I will have to see what the cost is and if it is a covered drug with my Medicare part D presciption coverage and if not, would I be able to afford it out of pocket.

Infusions would probably be covered under ny part A and B. If approved.

More research to do before my appointment this month. The study Juanitad referred me to quoted "in severe, generalized myasthenia gravis" and that alone may exclude me because of the condition I am in right now.

Thanks again;

scrubbs

[4-eyes]

Cytoxan is a very old drug, and is comparable to prednisone in cost. Very, VERY affordable.

Good luck!