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Losing a LEMS Medication, Maybe
We each have our own unique set of physical issues that travel along with the Lambert-Eaton. Many of us have more than one autoimmune problem. For me it’s Dermatitis Herpetiformis, a celiac disorder. You may have others. The one that’s impacting me now is kidney disease brought on by long term diabetes. It is already affecting my cardiac treatment plan and may be about to alter my LEMS treatment plan. Immunoglobulin is hard on kidneys. As my kidneys get progressively worse, the ability to continue IVIG is seriously in question. With my neurologist appointment in two weeks it may come to a decision. The most promising alternative I’m hearing about is Rituxan (rituximab), an immunosuppressive drug. Other than the risks of being in a pandemic, I’m hearing very good things about its efficacy. If you’re on an immunosuppressive drug, please let me know how it’s working for you. Decisions have to be made.
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7 Replies
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@pricewool
You and I have been chatting about this possibility, and maybe it will be a good chance if you end up having to switch to Rituxan. I know switching treatments can be very scary and overwhelming, but know we are here for you Price.
I know it’s definitely a possibility for me as well. I am interested to hear what other members have to say about their experiences with Rituxan.
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I am unable to have ivig because of Leiden factor v and the risk of a clot. I am presently on azathioprine a immune suppressant drug. Not sure if its the same as Rituxan, but it doesn’t seem to be working. I will certainly ask my neurologist about Rituxan. I am also on ruzurgi which I am now getting through a Canadian pharmacy.
I have also been recently screened about cancer with negative results. The only autoimmune disease I know that I have is celiacs.
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@joanneevans Joanne I’m unfamiliar with the immunosuppressive drug you’re on, but my research is telling me Rituxan works well. I also am celiac with Dermatitis Herpetiformis.
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So Grace started out with ivig and had treatments every four weeks for about a year. But around the year mark, her neurologist thought we may have better results with rituximab because her walking and balance were still very compromised. She had her first rituximab and she definitely had increased results from the rituximab in relation to the ivig. She has more energy and does not have the highs and lows throughout the month like she did with ivig. Overall, it has been a very positive result for us so far. Price, I hope you are able to have peace about whatever decision you make going forward and find what works best for you in light of the new health concerns.
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This is another good report on Rituxan. Thanks. I’m glad it’s benefited Grace. This will be a discussion with my neurologist on the 25th. My only qualm is the immunosuppression. But we do what we must. More to come….
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I was diagnosed with lymphoma in 2004 and have since had several rounds of infusions of Rituxan. When I was diagnosed with LEMS last year, my oncologist and my neurologist thought that since LEMS can be a precursor to small cell lung cancer that it would be prudent to have a 4 week series of Rituxan “just in case”. I had scans that did not show any signs of nodes or tumors, but I had the Rituxan anyway. This was about the same time that I started Ruzurgi. My LEMS symptoms went into remission. We’re not sure if it was the Rituxan or the Ruzurgi, but something worked. The good thing about Rituxan is that it can stay in your system and work for several years. Also, it’s not like other types of chemo in that you can have booster infusions several times a year.
The only side effects I ever had from Rituxan is being very tired the day of the infusions. But, part of the protocol with Rituxan is to administer a lot of Benadryl, so that makes you really sleepy!
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Yes, it can be difficult to assess efficacy in a situation like yours, adding multiple medications. I too tie Benadryl with my IVIG, and it’s proven to be quite a nap aid. And another good report on Rituxan. Thank you.
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