Well here we are in November of 2006, let me see if I can catch up a little.
When I was first diagnosed with MS I went on Copaxone and had to mix the powder form with sterile water prior to injecting, that was no problem, just took about 10 minutes. They soon came out with the pre-filled syringes and a new auto-injector. Life was good! After moving back to Texas my new Neuro did a MRI and discovered new liaisons, he said we need to be more aggressive and switched me to Rebif, they already had the pre-filled syringes and an auto-injector. Then the Alferon fiasco. I am now on full disability. I collect Social Security and my long term disability insurance After the Alferon I decided to change Doctors. Talking to my PCP, he recommended Dr. Bass and her practice. I got in to see Dr. Wayne Gordon pretty quick. He is a tall younger version of Denzel Washington. He is a great MS doctor. He is very dedicated to his patients and to keeping up on the latest MS research. His own sister has MS. I never fully recovered from the Alferon and had major headaches and bad body pain daily, this was on top of all my normal MS symptoms. Dr. G's first plan was to get me back on Rebif and to try IV Steroids. I had the steroids and and the headaches and body pain went from 9's to 2's. I was in heaven. Next was to start on Novantrone. Novantrone is a low does of chemotherapy. It is done every three months. I first had to have blood work and a 2D echo of my heart. Next was the Novantrone infusion. They first start an IV line and then run in a Saline solution and a dose of Anzemet. The Anzemet is for nausea. This takes about 20 minutes total. Once the Anzemet is done they then add the Novantrone, it's a beautiful cobalt blue. It take the Novantrone about 30 minutes to run and then you have to wait for the Saline Solutions to finish, maybe another 15-20 minutes. We usually stop for lunch before we go home. I have had very little problems with nausea or the infusion its self. I have blood work done every month and another 2D echo the week prior to the infusion. The Novantrone has knocked my white blood count down very low. A normal white count is between 4.5 and 11. After my infusions mine only comes up to 1.7 at the highest, it was .6 one time. A low white count causes fatigue and weakness. So you can just imagine how weak I was. This had my next scheduled infusion delayed a month and the dose reduced. I then found out that I could use Neulasta. One injection and it brought my white count up around 6. This only lasts for 3 weeks so I have to coordinate it with the infusion center. So now we are back on a regular schedule. Neulasta, blood work, 2D echo and then the infusion all within the same week. My only concern is with an extremely low white count for 2 months or so I am very susceptible to infection. I take as many precautions as I can.
A low white count with a suppressed immune system causes me to have mouth ulcers. These are little sores in my mouth, very much like canker sores. They start out tiny and grow. They can be anywhere in my mouth, on my tongue, the inside of my lips, anywehere. Sometimes its only one, other times it has been as many as 10. They hurt so bad that sometimes I can't eat. I have tried everything from saltwater wash to Lidocane to every product on the market, some things make the ulcers worse and some don't do anything. My best treatment is a cup of hot tea, two mobics and Kanka softbrush gel. They can last anywhere from 3 days to 3 weeks. I have had three Chalazion. A chalazion is an inflammation of the deep oil glands inside the eyelid. Chalazia typically grow slowly over 2 to 3 weeks. They didn't hurt, but they sure scared me. They looked just like my mouth ulcers but on the inside of my eyelids. I had steroids injected into each one. They are still there but they are much smaller now and are no longer as inflamed. If they get worse the next step is to have them surgically removed. I have had 3 injection site infections this year that had me getting an antibiotic injection. Two had to be lanced and drained. I was feeling as if I were not getting better or at least maintaining a level of wellness. The first week of November Jennifer an I went to a seminar hosted by Teva, the makers of Copaxone, one of the guest speakers was Dr. David Altman (he's one of the partners with Dr. G). He talked about how you can build up resistance to drugs. He also spoke about Tysabri, it sounded like something I needed to look into. On the 13th of this month I went to Dr G to talk about all this. He told us that Tysabri was for RRMS and that I had Progressive MS. So we are going to change back to Copaxone. I am scheduled to get a MRI on the 20th. I will continue with the Novantrone and start Copaxone as soon as the MRI results are in.
Back in March I had some problems with some of my drugs interacting with each others. Turns out that my Zanaflax (for spasticity) was the culprit, so I had to stop taking that one. I will now be taking Baclofen. I'll keep you posted of my progress.