First off, as always, thanks for the response to my last post, I believe.
I'm not a number counter by any means. It was only meant to put a bottom line on something. But thanks for the haiku.
I adopted a couple of cats right before Christmas. They are 9 months old now and brother and sister. They are Maine Coon mixes. Maine Coons are pretty much a dog in a cats body. Take the best traits of both and there you go. Pure breeds can get large. A not fat cat male can get close to 20 pounds. They can get huge manes, have tufted ears and furry paws. It's nice having something to come home to and something to take care of besides myself.
Last time I signed off with that my fingers were getting all tingly. Things got worse after that. I had a cold which took me three weeks to get over versus two weeks that it took everyone else. After that, I don't really know if it was a stomach virus or something else, but well, you get the idea. It could have been just me talking myself into puking. I had dinner and with every bite I just felt more and more bloated. For the rest of the night it was "I would feel better if I just threw up." Since I felt like crap and I don't willing puke on my own, I decided to go to bed and sleep through it and by morning it would be better. Every time I woke up, it wasn't any better. Finally, by three in the morning, what little I had in my stomach came up.
That's when things changed.
The myelitis had gradually came back not quite to the level where it was at it's worst, but close. Since MS is thought to be auto-immune and auto-immune by definition is your immune system gone into overload, I could have had a virus and what happened next could have been an exacerbation.
My legs are horrible. Just intense tingling and just the tightest feeling I have ever known. Just imagine a rubber band pulled to its breaking point. Just standing for any length of time is pins and needs. Knees and ankles . . . I look like a puppy that's going to grow up to be a big dog. Small legs but big feet just flailing all over the place. The thing with my hands went away and with this came back. My left hand went tingly at the fingertips and worked it's way down. My right hand, something entirely different. If felt like it would if you slapped something really hard. It would itch to no end. So bad that I had to put on a cotton glove so I wouldn't scratch it bloody.
Friday I had my check up with my neurologist. Like a previous post I had, they are the most depressing things when things are going bad. You have to spill your guts about how your body is deteriorating and there's really nothing that can be done except steroids to lessen the inflammation.
The outcome: The prednisone by tablet doesn't seem to really work for you so lets do the Solumedrol followed by a prednisone taper. Since I was due for an MRI, lets do cranium, cervical, and thoracic. Also, we might start thinking about changing meds. Tysabri in the extreme but probably Copaxone since it's every day instead of three times a week for Rebif. Oh, the down side of Tysabri was that it was pulled off the marked after there were three deaths in Europe. The FDA pulled it in the US before anything happened. It's thought that the deaths were caused by dual treatment so it was placed back on the market.
Starting Monday, I'll have a new catheter and an IV bag a day ending on Friday, followed by 20 days of tablets. Thursday I get to sit in the MRI drum for 4 hours since they are doing all three areas at once and since it's with contrast, I get to come home and then do an IV bag. But no biggie, I'm on steroids, I'll be wired for the next month. With the remaining question: Will it do any good?
Sometimes I don't know whether I want to shout or cry. Most of the time I just keep on keeping on.
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2 comments:
Go with Tysabri. The risks otherwise are very clear, as you are now experiencing them. The very slight risk of PML looks like it is less than one-in-a-thousand. I'm on my sixth infusion. Zero side effects and it will probably keep me deficit-free. Take care.
Hi Steve,
I'm so sorry that you're not doing very well right now, hopefully you'll start to feel better soon.
Having testified before the FDA AC in March 2006 at the Tysabri hearings, and after having 29 Tysabri infusions so far, I feel that I must point out several inaccurate statements made by you regarding Tysabri.
You said, "Tysabri in the extreme but probably Copaxone since it's every day instead of three times a week for Rebif. Oh, the down side of Tysabri was that it was pulled off the marked after there were three deaths in Europe. The FDA pulled it in the US before anything happened. It's thought that the deaths were caused by dual treatment so it was placed back on the market."
1.Tysabri can and has been used as a first-line therapy for MS, it is not used only in the extreme.
2. The FDA did not pull the drug, it was voluntarily removed from the market by the manufacturer (Biogen) until they could review all of the safety data from the trials before they could resubmit same to the FDA.
3. The 3 deaths you refer to were not all in Europe. Only 2 deaths occurred at that time and they were in Tysabri trial patients, and neither one of them had MS, they were just severely immune compromised from prior medications they were on. Only recently was there a third MS patient(US) that passed away from PML due to the fact that she was already immune compromised due to the fact that she was previously on methotrexate to treat her rheumatoid arthritis.
What you need to understand is that PML is caused by a severely diminished immune system (or a very low immune system), not by Tysabri.
Tysabri is for "relapsing forms" of MS, and I don't know why you would rather be on a lesser effective MS medication (one of the ABCRs which are only 29% to 34% effective, respectively), whereas Tysabri is 67% at preventing further relapses, slowing the disease process down,and has proven data showing that it is the only FDA approved medication where symptoms have been shown to improve in some patients and their Quality of Life has greatly improved. In addition, Tysabri is an infusion administered once every 28 days, no more shots, yay!
I hope that some of this information is of help to you and your readers, and no matter which therapy you choose to treat your MS, I support you in your choice, but just please make it a fully informed choice.
I send you all my very best...,
Lauren :)
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