Good ME/CFS doctors in Norway?

TrixieStix

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Here's the breakdown as I see it

Rituximab

Pros:

-50-60% effectiveness
Haven't either Dr. Kaufamn or Dr. Kogelnik said something publicly about how they have not had the same level of success with Rituximab as the Norwegians have. ??? I am pretty sure I have read this statement somewhere.
 
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deleder2k

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@deleder2k When you say you get "glucocorticoids" before every infusion, do you mean Solu-Cortef, Prednisone, Decadron, or a different steroid? Does it depend on the individual and their history or is there a specific steroid that is generally given with RTX? (I feel a bit weird talking about this like it is a done deal and still a big chance that RTX is denied by my insurance and does not happen. Am just speaking as if I have faith that it will)!
In the RTX trial they give patients 8 mg of dexamethasone 1 hour before infusion. At the private hospital Kolibri Medical they give you Solu-Medrol (Methylprednisolone) IV just before they start giving you RTX. I think the dose is 125 mg. It is the same before every infusion.
 

deleder2k

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Haven't either Dr. Kaufamn or Dr. Kogelnik said something publicly about how they have not had the same level of success with Rituximab as the Norwegians have. ??? I am pretty sure I have read this statement somewhere.
http://forums.phoenixrising.me/index.php?threads/rituximab-in-the-usa-dr-kogelnik.14024/

Look at the first post. Too bad the blog isn't working any longer. I think he has said that he is seeing the same results as the Norwegians, but I can't find it...

@Gingergrrl, could it be that your insurance would deny you treatment in the US because of the cost, but give you the funds to have the treatment done in Europe if they save 20 grand??

Even though, they are not doing a proper study, so impossible how to interpret results. Not sure if they only accept patients that fulfil the Canada criteria. I think all we have is the two studies from Norway. Around 2/3. Then create a safety margin. Multi-centre trials tend to show longer response rates. Say 50% respond. While 50% not. I think Fluge and Mella has said they are pretty certain that that is what we're looking at. You'll get the results with the final results first half 2018. The question is whether one want to wait or not. For those living in the US I would try to find out if medical insurance would cover it if phase 3 trial comes out positive. I have no idea how you're system works on drugs that are non FDA approved. If the study is positive, and you'll still have to pay all out of pocket then I would probably consider going to Norway now and try. At least if one is in OK shape to do it, both physically and financially. On the other hand, if life is okay, you're able to have a decent life. Taking care of your own, have some fun, having enough energy to be in a relationship and so on, I think I would wait.

Just some late night thoughts from the neighbour of Sweden (I too survived last weekend!)
 

JamBob

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@Jonathan Edwards How about steroid dependent patients - are they still able to be treated with Rituximab? Did any of your RA patients have RTX at the same time as being on steroids?

I'm usually on 25 mgs cortisol per day (though it goes up to 50mgs and once even 80mgs during infections).

Do you think low-moderate levels of steroids daily would cause someone to get more infections when on RTX?

I do not think it would make any significant difference. Opportunistic infections do not occur in people taking steroid doses of that sort.

Thank you for your reply (and all the endless work you do on this forum!)). I had been worried that steroid dependency would preclude me from this kind of RTX treatment but hopefully I will be able to try it - if it is shown to work in trials later in the year.
 

Gingergrrl

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Haven't either Dr. Kaufamn or Dr. Kogelnik said something publicly about how they have not had the same level of success with Rituximab as the Norwegians have. ???
They have said that they have seen the same kind of results as the Norway trial but I have no link or statistics to back that up.

In the RTX trial they give patients 8 mg of dexamethasone 1 hour before infusion.
Wow, that is a lot! I cannot even tolerate 2 mg of dexamethasone (Decadron) and if I need to take it at future IVIG's, it is going to be 0.5 mg. Have no idea about Prednisone b/c have never tried it.

@Gingergrrl, could it be that your insurance would deny you treatment in the US because of the cost, but give you the funds to have the treatment done in Europe if they save 20 grand??
Not a chance in hell that my insurance company would do this! The question made me smile though. I am also still too ill to travel by plane. My only hope is convincing my insurance co to authorize it or getting financial assistance from Genentech.