Kenny Banya
Senior Member
- Messages
- 356
- Location
- Australia
I am seeing my rheumatologist in a couple of days. I will be requesting a prescription to start using Methotrexate, which he had already agreed to do a year ago. I didn't go ahead with it because it coincided with extremely rapid worsening of ME (literally within a couple of days, thanks entirely to using Modafinil). The Specialist at CFS Discovery who I saw told me to not go ahead with MTX, as she believed her advice & prescriptions would improve my condition & that joint pain is also typical of ME. Well, one year on, they haven't. If anything I am actually worse, even though I discovered I am Casein & fructose intolerant & have adjusted my diet for.
So I am biting the bullet & getting MTX. I had no absolutely no response to corticosteroids (Solone/Prednisone), but boy did it give me shocking insomnia. I have joint pains throughout fingers on both hands, hence why my symptoms mimic Rheumatoid Arthritis (not Osteoarthritis).
remember reading of some evidence for MTX having an effect for ME. So I might get some extra benefit. Even though I didn't get any benefit from corticosteroids, the rheumatologist was still willing to prescribe MTX. He did say though that if I do respond to MTX, I would be only the second person in the history of his public & private practice to have done so, when not responding to corticosteroids!!!
Anyway, I will ask him whether he would be willing to prescribe Rituximab off label, after the Norwegian trials are published. As RTX is typically used for severe cases of RA & it is an autoimmune disease like ME, it would make sense for a rheumatologist to administer it.
I spoke to Roche Australia, the manufacturers of RTX, about getting the drug approved by the Therapeutic Goods Administration for listing on the Pharmaceutical Benefits Scheme, after the trials are published. The technical advisor gave me the email contact about getting the listing. However she was also kind enough to explain the technical process for getting RTX administered off label, as it is an application process that has to be reviewed.
Anyway, I am interested to see what a typical rheumatologist's view/position is, for off label treatment, particularly one as dangerous as RTX.
UPDATE - see below
So I am biting the bullet & getting MTX. I had no absolutely no response to corticosteroids (Solone/Prednisone), but boy did it give me shocking insomnia. I have joint pains throughout fingers on both hands, hence why my symptoms mimic Rheumatoid Arthritis (not Osteoarthritis).
remember reading of some evidence for MTX having an effect for ME. So I might get some extra benefit. Even though I didn't get any benefit from corticosteroids, the rheumatologist was still willing to prescribe MTX. He did say though that if I do respond to MTX, I would be only the second person in the history of his public & private practice to have done so, when not responding to corticosteroids!!!
Anyway, I will ask him whether he would be willing to prescribe Rituximab off label, after the Norwegian trials are published. As RTX is typically used for severe cases of RA & it is an autoimmune disease like ME, it would make sense for a rheumatologist to administer it.
I spoke to Roche Australia, the manufacturers of RTX, about getting the drug approved by the Therapeutic Goods Administration for listing on the Pharmaceutical Benefits Scheme, after the trials are published. The technical advisor gave me the email contact about getting the listing. However she was also kind enough to explain the technical process for getting RTX administered off label, as it is an application process that has to be reviewed.
Anyway, I am interested to see what a typical rheumatologist's view/position is, for off label treatment, particularly one as dangerous as RTX.
UPDATE - see below
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