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Norwegian TV: Patients pay out of pocket for private Rituximab treatment

melihtas

Senior Member
Messages
137
Location
Istanbul Turkey
In Turkey you can buy MabThera from a chemist without a prescription. Online sales of any drugs are prohibited.

500 mg vial = 915 USD
1400 mg vial = 1200 USD

I don't know if there is any clinic to administer RTX for ME/CFS in Turkey but if you brave or crazy enough to do it in a hotel room it is much cheaper here though I still cannot afford.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I know someone here in the US that recently tried Rituximab for dermatomyositis, and it cost 40-50 thousand dollars per infusion! His insurance covered it even though it sounded like it was a shot in the dark for his condition.

Dermatomyositis was actually one of the first autoimmune conditions to be treated with rituximab. There are probably still no are formal trials but a good proportion of patients improve following treatment and the immunology suggests that they treatment is the cause of the improvement. I would certainly expect to treat a patient with dermatomyositis with rituximab. About the only alternative would be cyclophosphamide, with all its toxicities.
 

Riley

Senior Member
Messages
178
Dermatomyositis was actually one of the first autoimmune conditions to be treated with rituximab. There are probably still no are formal trials but a good proportion of patients improve following treatment and the immunology suggests that they treatment is the cause of the improvement. I would certainly expect to treat a patient with dermatomyositis with rituximab. About the only alternative would be cyclophosphamide, with all its toxicities.
Interesting. Thanks for the information. I only read a little bit about it's use for this condition.

Unfortunately the guy I know doesn't seem to be responding, and his family is starting down the path of quacks and voodoo out of desperation.
 

deleder2k

Senior Member
Messages
1,129
In Turkey you can buy MabThera from a chemist without a prescription. Online sales of any drugs are prohibited.

500 mg vial = 915 USD
1400 mg vial = 1200 USD

I don't know if there is any clinic to administer RTX for ME/CFS in Turkey but if you brave or crazy enough to do it in a hotel room it is much cheaper here though I still cannot afford.

You can't do it in a hotel room. You need medical equipment in place. I am sure that one can find one doctor in the entire Turkey that can help, don't you think? But I wouldn't let someone treat me if I wasn't sure that they were familiar with rituximab.
 

melihtas

Senior Member
Messages
137
Location
Istanbul Turkey
You can't do it in a hotel room. You need medical equipment in place. I am sure that one can find one doctor in the entire Turkey that can help, don't you think? But I wouldn't let someone treat me if I wasn't sure that they were familiar with rituximab.

I do not recommend to do this to anyone but everyone is in a different condition and situation. My ME is progressive and I am on the verge of becoming completely bedbound. I am determined to do something before that happens.

Only medical equipment I need is an infusion pump. It is rented by medical suppliers.

I cannot afford to buy rituximab let alone a clinic to administer it that will at least double the costs. If CyloME study results come out positive I will do it with Cyclophosphamide.
 
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deleder2k

Senior Member
Messages
1,129
You need to have equipment if side effects occur. The patient can experience a range of side effects that can include problems breathing. That is why you don't do a rituximab infusion in a elevator or in a hall! ;)
 

deleder2k

Senior Member
Messages
1,129
The oncologist I speak to always have some IV of diazepam (valium) ready in case the patient freaks out ;)
 

melihtas

Senior Member
Messages
137
Location
Istanbul Turkey
You need to have equipment if side effects occur. The patient can experience a range of side effects that can include problems breathing. That is why you don't do a rituximab infusion in a elevator or in a hall! ;)

Those side effects are seen in cancer patients.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580676/
These are likely a part of the spectrum of the 'cytokine release syndrome' that has been described after rituximab infusions in patients with high tumor-cell burden


The oncologist I speak to always have some IV of diazepam (valium) ready in case the patient freaks out ;)

I am not a kind of person who freaks out.
 

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
Good luck, I would take oral dexamethasone and an anti H1 two days before and on the day of the infusion. I've seen my Share of infusion toxicities in patients even with liw tumor burden.
 

deleder2k

Senior Member
Messages
1,129
Those side effects are seen in cancer patients.





I am not a kind of person who freaks out.


There are a range of side effects that also could occur if the person does not have cancer. We should be extra careful since we don't know much about ME. You don't know if you freak out or not if you can't breathe or faint. The chance is low, but one need to be prepared of everything during an infusion of a 'mab like this
 

Gingergrrl

Senior Member
Messages
16,171
There are a range of side effects that also could occur if the person does not have cancer.

I agree w/this @deleder2k and infusion reactions can occur from Rituximab (RTX) up to 24 hrs after the infusion in autoimmune disease patients who do not have cancer. My understanding is that the risk is higher when RTX is combined w/other chemos, or patient w/cancer at risk of tumor lysis syndrome, but all patients at potential risk of anaphylaxis or other fatal or dangerous infusion reactions. None of this will stop me if I ultimately get the opportunity to try it but there are ways to try it as safely as possible (in hospital or infusion center, adequate pre-meds, trained staff, slow infusion speed, etc).
 

Gingergrrl

Senior Member
Messages
16,171
That is the price in the US at OMI.

I think that is the price at OMI if someone were 100% private pay but if they are able to get insurance authorization, then the medication is covered as well as some of the infusion costs.

Dermatomyositis was actually one of the first autoimmune conditions to be treated with rituximab.... I would certainly expect to treat a patient with dermatomyositis with rituximab. About the only alternative would be cyclophosphamide, with all its toxicities.

That is really interesting and I did not know that dermatomyositis was one of the first autoimmune conditions to be treated with Rituximab (RTX). It sounds like it can be tried off-label for most autoimmune conditions and there is always the hope that it might work (without the toxicities of cyclo).