Rituximab and other alternative treatment question
March 21, 2020 at 4:55 pm
Male in his twenties and also a recent graduate that was just diagnosed this January of 2020 after meeting with several neurologists, neurophysios, and neurosurgeon. Did my EMG-CV, Lumbar Puncture, Sural Nerve Biopsy and other tests such as heavy metals, dozen of test tubes of blood etc to remove other possibilities of other diseases.
I live in a 3rd-world country and I’ve yet to enter the world of jobs to maintain all these medical bills (along with the pandemic going on that put not just mine, but everyone’s life in a standstill). And since I don’t have any type of insurance because my parents are anti-medicine and anti-government, I’ve been dealing with feeling like a burden.
Prednisone was the cheapest alternative that I can afford but months before the CIDP diagnosis, I was also diagnosed with Type 2 Diabetes Mellitus, and corticosteroids chemically make my blood sugar shoot high that I go through a single insulin pen within 3 days completely uncontrolled. Neuros had no choice but to get me off it since it was doing too much damage to my body and it wasn’t worth it.
I’m now on Azathioprine (Imuran) but the swelling returned, the pain came back full force and worse, so here I am in the present that consulted his neurophysiologist.
He said IVIg is the best course to go, especially since I’m in crutches. (blew my mind the amount)
He also said Plasma Exchange is the next but still very costly.
Next he said Steroids, which I just can’t do since the damage exchange is just as bad.
He then proposed Rituximab which I never heard of until that time spoken.
It’s converted around… 2000-4000 dollars worth depending on the dose I need which 1 dose is 2000 and if needed a second, then its that big 4k.
I seriously don’t have the funds for any of this but trying my best to raise for at least Rituximab now.
Do any one have experience on this treatment or even another alternative that’s possible?
I just need some advice because I feel like a huge burden since my younger siblings will have less because I suddenly need more which my family cannot afford. I know its not anyone’s fault but I just don’t want to be a burden and think its more practical that I just deal with it, but the complete life halt and change, and especially the pain, has been way too much for me to handle. Being practical I think I should let go of my life since I’m still young and didn’t make huge commitments yet being just graduated college a few months ago.
How do I fight this so that I can relieve the burden off my family?
Other notes: I take CoQ10, Biotin, B12, NAC, ALA, Ashwagandha, Vit C and D, Pregabalin, Amitriptyline, Azathioprine but none seem to make any of the symptoms better. Toes on left foot started to have a claw look with more intense shocks on my arms and right leg too. Really hard dealing with it. Almost 5am now as I write all this with incredible struggles to find rest and sleep as every night is a challenge to let exhaustion win over the pain just to sleep.
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