My doctor appointment went as expected. I will be continuing on Rituxan for the foreseeable future. There really is nothing on the market for me to change to at this point. The question about me getting worse, isn’t really a question, it’s more of a fact. That is what secondary progressive MS is, it’s steady decline or worsening of symptoms. That is what I have and they are really no drugs for that, at least for me. Mayzent Is on the market for secondary progressive however this is made by Gilenya and unfortunately I failed on Gilenya so it makes no sense to put me on it.￼ I’ve been on Betaseron, Avonex, Rebid, Copaxone, Gilenya, Tysabri and Ocrevus. It’s been 22 years, I’ve seen a lot of drugs. With my immune system now having this reaction with these blisters Rituxan is NOT the cause of the blisters to introduce yet another drug that knocks out yet another part of my immune system, like Macenclad, made no sense. ￼ even though I knew the outcome, at least it was a conversation. I must admit that this blog helps me stay fairly informed of what’s happening out there.
We did touch on the stem cells and HCST. She feels that there is a clinical study out there in phase 2 for stem cells that may work for me, yet still very invasive. ￼￼￼ this is the stem cells that they take from your own bone marrow and injected into your spine. There will be a clinical study in this hospital where she is that maybe one day I could be a part of but as expected that will still be down the line. She does not feel that HCST ￼would benefit me.
As far as the blisters go and the abscess, she did look at them and that was discussed. If it does come back MRSA she would like me to have an infectious control doctor that would follow it just a little better than a dermatologist. She did have a patient on Ocrevus that had MRSA and was cured by a straight antibiotics treatment without complications. I did additional bloodwork in her office yesterday for her to check antibody levels. The possibility of an infusion for antibodies was discussed as well.
It was a long day yesterday but a necessary one. I might have known most of the answers but they still needed the documentation in my chart. She is a lovely doctor and caring. She spent a considerable amount of time with me as she always does. She knows my other neurologist, she went to school with his daughter. They do make a good team together in helping me manage a difficult disease.