Steroids, Rituximab and summer
I have diagnosed with gMG (seropositive)since Feb 2022.
I was on steroids since then.
I stared to have issues with my vision.
Checked up and diagnosed as a steroids responder and early stages og glaucoma was detected.
So to stop the steroids, chemotherapy via Rituximab IV was started in March 2023.
I have two doses of Chemo on 13 Mar and 28 Mar.
Also as per docs advice I am continuing with Steroids till June 23.
The symptoms don't seem to reduce. Spoken with doc, he says it will get worse before it starts to get better.
Now with onset of summer India my situation has worsened.
Need feedback on efficacy of Rituximab and it's recovery period.
Also how to deal with heat.
Thank you all in advance
suvarthi.... While I have no personal experience with Rituximab. Trying to keep cool I do have... Here are a couple of articles that might be useful with keeping cool. Best Wishes!! Sally Farrier...Myasthenia-Gravis.com (team member). https://myasthenia-gravis.com/living/heat https://myasthenia-gravis.com/living/summer-heat
Temparature here in India now ranges from 100 to 115. The air-conditioned rooms are the only safe place. Heat is triggering off MG, was admitted twice.
Haven't yet tried the ice pack..... That is about the Temperature range during the summers where I am also. But anything over 80 degrees is too much for me and I need to keep cool. I also use a cooling neck fan (personal air conditioner/ wearable air conditioner, they can be ordered online). While they don't work for long without needing recharged. 1-3 hours depending on the speed of cooling you use. For me it does take the edge of to get around some outside, between air-conditioned area/rooms. Do you have high humidity also? Hoping you find some relief!! Sally Farrier...Myasthenia-Gravis.com (team member).
I certainly agree with your doctor that it could take several months for your symptoms to improve with the treatment you've done recently. If in a few months, there is no improvement, mainly if the weather cools down and symptoms worsen still, you could try plasmapheresis and IVIG if available to you, https://myasthenia-gravis.com/plasma-exchange-ivig. There are also many immunosuppressants you can try, https://myasthenia-gravis.com/immunotherapy-drugs. Rituximab is believed to be more effective for those testing positive for MuSK antibodies, https://myasthenia-gravis.com/living/rituximab. Most all MG treatments are more effective for a specific type of MG. Do you know if you are positive for acetylcholine receptors (AChR), muscle-specific kinase (MuSK), or low-density lipoprotein receptor-related protein 4 (LRP4), https://myasthenia-gravis.com/causes ?
- Jodi, Team MemberOh, ok. With the original post, I was unsure if you were on any immunosuppressant except for Rituximab. Azathioprine is great.
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Your post makes it read like you are still experiencing uncontrolled symptoms and trying to get off the steroids.
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Not everyone's body tolerates getting off steroids well, and tapering is typically done slowly to help the body adjust. Rapid stopping of steroids without another treatment controlling your MG could potentially lead to an MG crisis, https://myasthenia-gravis.com/crisis. If your healthcare team attempts to stop the steroid altogether asap, adding a new immunosuppressant could keep your symptoms at bay or raise the Azathioprine dose. If you have been on the Azathioprine since November, you should have seen improvement if you were going to by now. If you have noticed no improvement, potentially consider one of the other treatments I listed above.
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I left a link above for plasmapheresis and IVIG. Either could be beneficial during the period of going off the steroid.- Jodi, Team Member
The LRP4 is not usually (a standard) tested in the United States either. For the most part hard to get tested for here. Sally Farrier...Myasthenia-Gravis.com (team member).
Hey! Are you on, or have you been on mestinon before?
- Jodi, Team MemberHi, I am been on Mestinon 60 mg TDS since April 2022
