Update Friday the 13th

Hey everyone.

I have finally decided to do something about keeping everyone informed about my health without getting on the phone with each and every one of my dear friends and family. I absolutely must start off by saying thank you to all of you for all your thoughts and prayers over all these years. I completely believe that I have felt your good thoughts over the years, and that it has helped immeasurably. I am hoping that keeping this log will get everyone the details that you all deserve and need to hear while keeping me from talking about Myasthenia Gravis 24-7.

As most of you know, the past 3 years have been extremely difficult. Before the kiddos, we kind of just led our lives and had this crazy disease to "mix it up a little bit". It was difficult and scary at times, but nothing like it has been recently. I am not planning to make this a big vent session for me, but I do want to be honest. I have been through just about every drug available to use for MG, and none of them have done what they needed to do without major side effects. I am sure in later postings I will go futher into this, but right now, I just want to get the information out there about my most recent appointment down in Boston with my neurological guru, Dr. Gorson.

To sum it up briefly, I have taken Imuran (twice), CellCept and now Cyclosporin. I also have been through dozens of courses of plasma-exchange and Intravenous Immune Globulin (IVIg). I don't even want to count how many times I have taken massive doses of Prednisone. I also take Mestinon every 4 hours while I am awake. The long and short of it is that there is nothing that keeps me from getting into a crisis situation if I get a little cold or one of the kids doesn't sleep for a night or two. That doesn't include any physical or psychological stress that any normal human being faces on a regular basis.

Last November we faced the worst crisis I have ever experienced. I went through 6 plasma-exchanges, combined with the used of steroids and the introduction of cyclosporin. Since then I have been going into Exeter Hospital about every 2-3 weeks for IVIg while weaning off of prednisone. I was fairly stable until about a month ago, when I was forced to re-introduce the steroids at 6o mg a day (huge dose for my size). In the past 2 weeks I have been through 5 IVIg treaments- unfortunately, the drug just isn't working the way it did in the past.

At the moment, I am decreasing the steroids while increasing the Cyclosporin. We have just increased the dose to 150 mg twice daily, which is the ideal for my weight. There is still lots of room for me to increase the dose, provided the side effects don't become too bothersome or dangerous. Guru Gorson has recommended decreasing the prednisone by 5 mg every2 weeks. I would have liked to go down by 10 mg bi-weekly, but I am going to do my best to follow my doctor's excellent advice and wait the 6-13 weeks for the higher dose of cyclosporin to kick in. There are several other drugs I am taking to combat the really fun stuff that prednisone can do to you in high doses- and I am confident that I am going to manage the decrease the way he recommended.

If I should get into any trouble while we are waiting to see how miraculous the cyclosporin is going to be, I will be heading down to Boston for more plasma-exchanges, rather than continuing to try the IVIg here in Exeter. The side effects have become pretty intense, and it doesn't quite cut the mustard- so it isn't worth doing anymore. We have tried it extensively- and the only way to come to this conclusion was to really give it a full chance. I am kind of sad that I won't really be using my local neurologist anymore, because he is a wonderful man, and a fantastic doctor. Plus the nurses in both Short-Term Stay and the Endo unit here in Exeter are beyond wonderful and I have become close with several of the other cronic patients- and I will miss them. They are a huge part of why I have been able to stay so positive through these often difficult times. Exeter doesn't have plasma-exchange, and Boston is really the best place for me. It really isn't that big of a deal for me to head down there for treatments- Gorson says not to let anyone dare tell me that I can't drive myself down for treatments. I have a proven track record with this, and I handle the exchanges remarkably well.

Gorson and I are hopeful that this drug will work well for me. The biggest issue at the moment is that my blood pressure has been rising- I have an appointment with my primary doc on Tuesday to address that and a few other minor side effects that can be caused by cyclosporin. The blood pressure thing might not be that big of a deal- both prednisone and IVIg can cause the same issue, so it might not even be related to the new drug. There is another side effect that is bothersome, but not seriously problematic. The drug can cause the hands and feet to have tingling sensations and there is an odd feeling concerning temperature- it is kind of like the feeling that one gets after being out in the cold for a long time. Other than that, my renal functions need to be closely monitored, but so far all my levels are looking good. The excellent thing about cyclosporin is that it can be measured quantitatively- I have my blood drawn regularly, and once the level reaches a certain number, we will know if the drug is working or not. These are not big deals- but I know some of you want details, and this is it :)

I have filled most of you in on the Cytoxan, which is the drug many websites call "the last resort" drug for Myasthenics. This sounds scary, but it really isn't nearly as bad as it sounds. It is chemotherapy, but it is given in very low levels, and I would be monitored very closely. That being said, we have decided to hold off on this until my cyclosporin levels have reached the optimum level. Doc Gorson was very positive about the Cytoxan, though. He has used it quite extensively in patients with MS, and he is very confident about using it in my case if the cyclosporin doesn't do what it needs to. Plus he mentioned that there are a few other drugs that are out there and on the horizon that can also be used if the Cytoxan doesn't help either.

Overall, this is all very good news- I hope that comes across through all this medical mumbo-jumbo. Sorry if this is too many details for some of you. Please feel free to check in on the blog anytime- I will be updating it as I get more information. Both Jason and I are feeling extremely positive about the current plan of action. We have a plan, and it is a very solid one.

Again, Thank you to all of you for your thoughts and prayers over the years, and particularly to those of you who have been so helpful and wonderful over the past weeks.