Price Wooldridge
Forum Replies Created
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Hi George! Yes, I’ve experienced exactly what you describe when I started IVIG some years ago. You are receiving pooled antibodies from a large group of blood donors, so it’s understandable that your body might not be very “happy” to receive them. For me, subsequent infusions beginning 4 weeks later were much better tolerated, though I did get nauseated at each infusion about 30 minutes in.
There are strategies to help with these problems, including pre-loading with an antihistamine (usually Benadryl), Tylenol, and for some patients, a steroid given by IV before the procedure.
Discuss all of this with your prescribing doctor and your infusion team. Reducing the infusion rate can help with the headaches sometimes. For my nausea we pushed Zofran pre-infusion for a long time. Eventually I got over it and we stopped that med.
Good luck with your infusions ahead, and work with your infusion team to make them as comfortable as possible.
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I see some googling comments with anecdotal experiences.
Someone I spoke with is on Imuran, Avathiopine, an immunosuppressant. You might check on that one too. -
There are people on Cellcept, and I’m checking on one now, so I hope you can get a good reply.
There are also a number of LEMS patients on Rituximab, sold under the brand name Rituxan among others. It is a monoclonal antibody medication used to treat certain autoimmune diseases and types of cancer.
Patients report varying degrees of success with it too. -
That’s a very good video illustrating the hip weakness from LEMS. Personally I don’t recall if I looked like this when I had my initial crisis in 2009 and couldn’t walk or get out of a chair. Now I just look a bit stiff legged when my hips are weak. But, I have recently seen videos from two other LEMS patients who do now or have exhibited this amount of hip drop in their walks. It’s a remarkably visible sign of the hip weakness of LEMS.
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Deborah thank you so much for the kind words. It’s always been a pleasure!
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Thank you so much, Eleanore. My years here were very fulfilling!
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Oh yes, I completely agree you have to run a rate you can tolerate. Whatever it takes, if it is working for you, that’s what you do.
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Thank you so much, Dorothy. That means a lot to me.
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Thank you so much, Wanda!
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Thanks Tracy! We will stay in touch for sure.
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Hi! We do not send out a link to the Zoom Social calls. It is always posted day-of here where you are. That is LEMS Forums,
Topic area, LEMS Community Zoom Socials. There will be a reminder posted here of date and time a few days in advance and a topic with the actual Zoom link that day.
I hope this helps. -
Dale, we post the Zoom call link to join day here where you replied to my announcement. We had a great call last month so hope you will join.
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Ginny, I am continuing to follow up with Catalyst Pharmaceuticals on their progress with Ruzurgi manufacture and distribution. As soon as I can get an answer, I will post it. Thanks!
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Hi Ellie! Yes, it does sound like your husband has been through a lot and has a number of medical challenges. Long term steroid use has its known problems, but I also know totaling weaning off can be difficult. This just highlights the need to understand the trade off decisions needed to accept treatment on medications.
I’m curious why he went off Imuran? Did he have adverse reactions, or was it not effective? And keep us posted if he starts Cellcept. -
Yes! I have read a few stories where patients have been diagnosed with LEMS and MG together. It’s good to hear you’ve got a good, non-invasive ventilator to use as well, and it’s working! Thanks for sharing.
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Here’s a link on MG. 14-40 per 100,000 population.
https://rarediseases.org/rare-diseases/myasthenia-gravis/Here’s a link for LEMS, 2.8 per million.
https://rarediseases.org/rare-diseases/lambert-eaton-myasthenic-syndrome/
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Here’s a link on MG. 14-40 per 100,000 population.
https://rarediseases.org/rare-diseases/myasthenia-gravis/Here’s a link for LEMS, 2.8 per million.
https://rarediseases.org/rare-diseases/lambert-eaton-myasthenic-syndrome/
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Please keep us posted on your efforts.
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Jessica, I’ve heard the same from several LEMS patients. When you’re already on an effective treatment plan, stepping into the unknowns of a clinical trial could make that decision much more nuanced.
Vyvgardt works for MG and word I have is they expect the formulation of efgartigimod, based on the same mechanism of action, will hopefully work with LEMS too. Vyvgardt is delivered as a series of infusions while the drug for LEMS is to be delivered by a sub-q injection. The basic concept of working directly on antibodies is similar, based on my understanding at this point.
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This is currently not known because the trial has not started. I believe this will be a consideration in the design of the trial. Right now a trial is not expected until next year.
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There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.
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There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.
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Interesting description. I have video of myself when my hips were fairly weak, and “penguin” might describe it. At least it looks somewhat stiff-legged.
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That’s a good question on contrast. I’ve only had it once as I recall, when they did my initial CT scan for cancer at my LEMS diagnosis. Every other CT I’ve had has had no contrast.
I don’t know the answer whether it’s contraindicated.