MS Update End of January

Dear friends, family, loved ones -

Some of you are joining this email list for the first time so that you can be in the loop and know how I am doing with my MS treatments and so forth. Welcome!

I also want to apologize for being so delinquent in writing and emailing. Until the last couple of days, I have been so sick from the medication, for so many months, that I have not been up for much in terms of sitting in front of the computer to write emails, too tired for calling, and far too icky feeling for hanging out.... But, I have to say that this week has started to feel much more promising....so expect to start hearing from me more often!

Now, onto the details. Despite having tremendous side effects, my dosage of the beta-interferon was increased to 3/4 of the full dose about a week and a half ago. As I had suspected, the side effects hit full force those first couple of days - it was just like I had just gone to square one. Nausea and vomiting, migraines, body aches, fevers, chills, insomnia. I had a few days last week where I really just thought that I had had it with this medication and that there's no way it could possibly be doing anything good for me because it makes me so sick every other day.

One new surprise that came up is the realization that the last few seconds of the injection, as the syringe empties into my skin, it burns really really badly. Last night I almost pulled it out before the medication was all inserted. I have now realized that i have to try to be much more diligent about numbing the skin with an ice pack before injecting, or I'll never make it through a full dose because of the pain. However, the last 2 injections, last night and Sunday night, while the injecting part was painful, I have been trying a few different strategies for mediating the side effects and it seems to be helping a great deal. Either that or I am starting to adjust to the medication in general.

Of course, of course, that means that Saturday night of this weekend I will be going up to the full dose for the first time. This dose will be a 1.0 mL dose - and presumably I will stay on that dose for the rest of my life unless something stops working for me or they come out with better options... But I do expect that the side effects will increase before they decrease permanently.

So I think the next week to 10 days will be horrible, but then, based on this week, they will probably even out. And the good news from the research front is that Merck just finished a 2-year trial of a drug in pill form that seems to reduce the number of relapses, at least during short term (2-year) administration. The side effects are still intense with that drug, but probably will fade as well, and if it gets approved in the U.S.

I'd happily switch just to be not taking an injection! As for symptoms right now, it's hard to imagine what are symptoms of multiple sclerosis and what are just side effects from the medication. I have super insomnia - especially on injection nights, which leads to poor mental health outcomes, but perhaps that will fade over time. I still have pretty continuous pain on a regular basis, but that will probably be the story of the rest of my life. I have noticed my right eye twitches every other day or so, but Steve thinks that it always did that - that I have complained about that in the past. It's hard to not be paranoid when you have a neurological disease!

Honestly, I don't think I am having any kind of relapses right now, which is good....MS is so unpredictable you don't know if you'll have days, weeks, months, or years without relapses, so I am glad to say that I am all right. Now, if the medication would just settle down and stay settled and the side effects diminish or dwindle down to nothing, then I can start living my life again. I have been kind of holed up in my apartment because I get so sick it's all that I can do to go to work....

But, like I said, I think there's a light at the end of the side effect tunnel. I am hoping that soon I will be feeling well enough to travel, especially because Steve is taking me to Las Vegas for Valentines Day/Presidents Day (our organization is closed Presidents Day)! Unfortunately, Steve has to go back to work on the pipeline out in Minnesota likely around March, so I won't have him to help out for a pretty steady span of time, but I'm so grateful the timing worked out for him to be home these last few months while things have been the worst.

Aside from that, after I get through the first week on the full dose, I will probably start making plans to see people that I have been neglecting in a very dire way - in Chicago, Michigan, and Wisconsin....there are especially some little boys who haven't gotten their Christmas (and birthday) presents from me, and a few grownups too!

Again, I would love to have visitors as well....Steve is leaving town on my birthday weekend and so I don't know that I will be traveling anywhere since that'll be the last weekend that I'll see him for a while, but gradually I will get in all those folks I need to see....

Once again, thank you all for your thoughts, prayers, letters, emails, and phone calls....without all of you this diagnosis would have been impossible to stomach, let alone face.... Love you all,Kate