Searching doctor who treats with Rituximab

[Amazonegirl]

Hi,
I am a 47 year old woman from Norway. I was diagnosed with moderate/severe ME in 2016, but was lucky enough to get experimental treatment with Rituximab in 2017-2018. After this I was able to work again, go for hour long walks, and have å little bit of social life again.

Unfortunately a combination of extreme vertigo and covid has set me back. I am now desperately seeking doctors in Europe or in USA who can treat me with Rituximab again.

I am extremely grateful for all help in this matter.

 

[Sallyagerharris]

Please do let me know if you find anyone who will do this. I’m 59 with severe ME and I know rituxamib hasn’t for everyone but after 18 years I’d like to try

 

[Amazonegirl]

Please do let me know if you find anyone who will do this. I’m 59 with severe ME and I know rituxamib hasn’t for everyone but after 18 years I’d like to try

Hi, I will of course if I hear of anything. It was sad to read your story. Rumor has it that there is supposed to be an opportunity in the UK. Unfortunately I have not been able to find out where it is. Is it possible for you to check in groups for ME in the UK? And hopefully you can get back to me if get name on doctors/clinics who will treat us with Rituximab? All the best wishes to you

 

[Sallyagerharris]

I will see if I can find out? Take care & fingers crossed we can find someone out there. Thx. Sally

 

[dankeen]

If you are willing to do it yourself ofatumumab aka Kesimpta is available from many pharmacists on Indiamart. It does almost exactly the same thing as rituximab. It is inteneed for subcutaneous administration by the patient. If you need monitoring or treatment for complications, you could tell your doctors that you received the treatment in another country.

https://www.kesimpta.com/taking-kesimpta

 

[JadeD]

@Amazonegirl I’m really interested in rituximab still and wondered if you can remember what dose you had since people criticise the Fluge/Mella study saying the dose used was too low.

Also would you kindly share how quickly you noticed a change in symptoms after your infusions and if you experienced any side effects? I hope you can find someone to re-prescribe it for you.

 

[dankeen]

@Amazonegirl I’m really interested in rituximab still and wondered if you can remember what dose you had since people criticise the Fluge/Mella study saying the dose used was too low.

Also would you kindly share how quickly you noticed a change in symptoms after your infusions and if you experienced any side effects? I hope you can find someone to re-prescribe it for you.

Hip did a count of rituximab anecdotes on this forum then they are generally disappointing. I would guess a 5% response rate. Still generic rituximab is only $100 per vial from India and UK customs reliably let through medicine without asking for a prescription.

Have you looked into daratumumab. It is much more promising and is used for treatment resistant autoimmune diseases. Unfortunately it is very expensive at $2100 per dose.

https://forums.phoenixrising.me/thr...couraging-preliminary-results-oct-2024.92935/

 

[JadeD]

@dankeen thanks for your reply. My dr is thinking of giving me a trial of rituximab for small fibre neuropathy and pots which he feels is likely autoimmune in my case. I’ve made him aware of daratumumab but as it’s not routinely used within neurology I doubt he’ll go for this first.