Week 11 - Post Lemtrada
January 7, 2020
First blog post of 2020 - Happy New Year!
First things, first...I received my missing lab work today and updated those results in the "Page" section. My B-cells are coming back with a vengeance and are in the normal range already for the Absolute number but they are way ahead of my T-cells and that may cause problems. My Neurologist prescribed a 1-day infusion of 100mg of Rituxan. The infusion center is going through the process of getting pre-approval from the insurance company so it'll probably be a few weeks. And on the plus side (not really), insurance deductibles have started over! I've been doing some reading on Rituxan. It's generally used for Lymphoma and certain Leukemia patients in combination with Chemo and in doses of up to 500 mg over several days. So the dose I am getting is very low in comparison. The drug attacks your CD20 Lymphocyte cells which is a type of B-cell. The idea is that it will knock my B-cells down a bit so my T-cells can catch up.
I was letting myself spiral a bit over the holidays obsessing over my Lymphocyte number going down so I started looking at some Lemtrada patient blogs to see what type of numbers they got. One women "
Emma" (not her real name) is a US citizen who went to Germany to have the infusion in 2014. It hadn't been approved by the FDA yet. I found it interesting that her "protocol" was very similar to mine. A few exceptions: their standard protocol was to only do 3 days of the IV Solu-Medrol steroid at 1gram and they had options to either continue at the same dose for days 4 & 5 or to do a step down of IV or oral steroids on days 4 & 5. The other differences were they didn't do an antacid medication which I did orally and through IV and it seemed she only had to do one 5-day treatment instead of doing a second 3-day treatment a year later. One pretty major similarity is they tracked the Lymphocyte Subset of T&B-cells (that is not standard protocol) and used Rituxan. Between her 3rd and 4th month Post-Lemtrada, her B-cells jumped from >20 or 1% to 241 or 45% and her T-cells were going up and down. She also had a reoccurrence of some of her MS symptoms. The Rituxan knocked her B-cells back down to 0 and also knocked her T-cells down a bit but they continued to grow while her B-cells stayed at 0 at least until the end of 2014. Unfortunately, she didn't continue the blog past a few posts in January and February 2015. In a post where she talked about taking Rituxan, she mentioned that she may have to repeat it in 4-6 months so I am not sure if she ever did. I tried to contact her through the comments section but they appear to be turned off or need to be approved as my comment didn't post. Before she stopped posting, she was seeing a lot of good results in her cognitive symptoms, stamina and balance. I needed to read some positive outcomes and I hope she is still doing well.
Another blog I read was
Tracy's. She is a UK resident who did her first round of Lemtrada in the UK in 2015. She is still posting which is nice to see how someone is doing almost 5 years on. So far she has had no disease progression in all of her follow-up MRIs. She did do a second 3-day round in 2016. Her protocol was different. She had an IV of steroid, then one of anti-histamine before the Lemtrada which it sounds like was just straight and not diluted then her line was flushed with saline but she didn't get an extra whole bag. She got pretty bad headaches during the Lemtrada which makes me wonder if it was too concentrated? She had all the same standard blood and urine tests done monthly but they did not check her B&T-cells separately and she is now on Thyroid medication. Emma noted that there wasn't any research to show that the B-cells coming back too fast caused additional autoimmune complications but since then there has been some evidence. I found this
article where researchers looked at previously unreleased data from the Lemtrada trials that suggest there is a correlation. Tracy also posted her lab data. Her absolute Lymphocytes came back pretty steady. Over the first year, she had one month where it dropped and another where it stayed the same but overall they gained each month. I also noted that she didn't recover them to fully normal levels during that year before she did her second treatment. It helped again to look at other experiences. I didn't think anyone would want to see my numbers but it helped me to look at what went on with other people so maybe it will help someone else.
So that's what I've been doing this past week. Reading and reflecting on the new year and the positive things that can be ahead. I've really been stuck in my own head lately and I haven't been sleeping well most nights again so that has not been helping my mood. I am trying hard to break out of that funk. My life has changed like night and day in the last 10 years. Ten years ago, my kids were young and I was still unemployed and collecting unemployment (laid off 10 months earlier - I remember the Great Recession). Now, my kids are in high school and we have a family business. Ten years goes by in a blink and you just need to move forward and try to be confident that things will keep getting better.
Symptoms: over the past week they've been a little up and down but mild. Overall, I've mostly just been really tired. I think I slept in an odd position one night and for two days my neck was sore. I was also cleaning out old paperwork and spent a day sitting and leaning over. My lower back didn't like that plus it's cedar season and even though I am technically not allergic to it, clearly it irritates my system because I've had a runny nose. Those three combined made me feel like I might be coming down with something but that night I got a good amount of sleep and the next day my neck felt better; all was fine. My hormones have been really off since the Lemtrada. Well, they were off already because of my age but it seems a bit worse since the Lemtrada. My monthly friend has been showing up 4-5 days early each month for the last three; meaning I've been getting a visit every 23-24 days and it really sucks. I've been crying over silly things the past few days. 🙈 So sleepiness, hormones, post nasal drip and a creaky body this week. Oh and my legs have been a little shaky in the mornings again and the numbness in my fingertips never fully went away. 🙄
What else... My finger prints started working again; that's a plus for the new year. My hands have been so dry they weren't registering on my phone or laptop. 😬 Even though I was putting lotion on them like crazy. I have my appointment with the functional medicine doctor this week. My 🤞 that something comes out of that. I spent time last week going through all my medical records and getting some old blood work together. All the allergy tests aka darts I've thrown in the past. I am hoping she can help with mood, my hormones and my tiredness. Maybe my extra tiredness has something to do with the B-cells; I am not sure. I guess we will see when I get the Rituxan. It seems a bit odd that I have to do this only after 2 months but maybe it's not. The lab wasn't able to get my T&B-cell count in November so I really don't have anything to compare it to. Because there was such a big delay in getting those last December results; I am actually due to get my 3-month blood work done in a week and a half. I guess that's all I can think of for now.
Wishing you peace and joy in the New Year, sending 💗 to Australia and a BIG 'thank you' to Emma and Tracy for taking the time to blog their experience. It helped put my mind at ease and I hope this will do the same for someone else someday.
