Good ME/CFS doctors in Norway?

deleder2k

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@Gingergrrl, I understand what you mean about trying RTX if you're bedridden. I didn't mention this, but the thing is that it looks like RTX doesn't work very well at all on most patients that are severely sick, i.e bedridden. If one is mostly bedridden, but can get up from bed sometimes and able to engage in conversations with family and friends, and if one is able to sit up and watch TV I am not sure if I would do it. I think that only the travelling to the hospital and the infusions would make a patient like that completely bedridden + chances of more pain/cramps/insomnia. But I see you're point. It all comes down to if you feel that life is worth living or not. Either way I think I would wait one year for the results to arrive from the phase 3 trial. Perhaps that would make it easier to be treated with RTX at your local hospital. Perhaps one could do the first infusion in the local hospital, and then do subcut injections of RTX at home with a doctor available during and a few hours after, in case of side effects. Either way the question would be if you would want to try something out that most likely wouldn't work. Response rates for severely sick doesn't look good with RTX. Perhaps cyclo works better for this group.

@Jesse2233, I am sorry. I don't. I can only say that a few seems to be in full remission, while most are not, but since most patients haven't had all their infusions yet, it is difficult give a clear picture of it. I am speculating that the response rate is somewhat lower than the trials, but it is too early to say anything about it. What I know is just a bunch of anecdotes. I am not sure about this, but I've heard some rumours from the trial that it looks like the time of response looks to be later than we've seen before. I can't comment more on this, as I don't know. One thing that should be noted is that I don't know whether ME by the Canadian criteria is a prerequisite to get rituximab at Kolibri.

Not many, but quite a few have been complaining about weight gain. I think they're getting 100 mg Solu-Medrol, @Jonathan Edwards. Could that amount of Methylprednisolone given IV before each infusion lead to a weight gain of 10-15 kilograms, or doesn't it have anything to do with glucocorticoids?
 
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Jesse2233

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@Jesse2233, I am sorry. I don't. I can only say that a few seems to be in full remission, while most are not, but since most patients haven't had all their infusions yet, it is difficult give a clear picture of it. I am speculating that the response rate is somewhat lower than the trials, but it is too early to say anything about it. What I know is just a bunch of anecdotes. I am not sure about this, but I've heard some rumours from the trial that it looks like the time of response looks to be later than we've seen before. I can't comment more on this, as I don't know. One thing that should be noted is that I don't know whether ME by the Canadian criteria is a prerequisite to get rituximab at Kolibri.
Interesting, thanks for that! Another reason for the difference may be Fluge/Mella have a different dosing and maintainence protocol that's been honed by their various trials
 
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deleder2k

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I don't think so. The dosing doesn't look to have any impact on the response rate, but only on how long the response lasts.
 
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Thank you and this matches what I am being told/reading. Do you have any opinion of the "Stratify JCV" blood test (done prior to starting RTX)?



Sorry, I was not clear at all. I am certain that my infusion center is aware of the figures and they administer RTX frequently to cancer patients. They carry out my IVIG order, as per my doctor, and I have gotten to know many of my nurses quite well so I casually asked them about RTX (in case I do it in the future) and they all told me that they had never once seen or heard of a case of PML from RTX. We really did not discuss it beyond that.



Is there a certain type of patient of profile of someone who would be more at risk of developing pneumonitis from RTX (or is it random)?
I had not heard of testing for JCV in advance, but I may be out of date.

I do not think we have any information about who is at risk from pneumonitis.
 
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Is it possible professor that taking Rituximab alongside another drug that affects the immune system but isn't classified as an immunosuppressant (I will not use the term immunomodulator :thumbsup:) might activate JCV or cause other complications?
It is not so much a matter of classification as a matter of whether it suppresses protective immunity - so it depends on what the drug is.
 

Gingergrrl

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I had not heard of testing for JCV in advance, but I may be out of date.
There is a test for the JC virus antibodies called "Stratify JCV" but I do not know if this is the only test or if there are other comparable versions out there. I have not done it yet but hope to do it by the end of this week.

I do not think we have any information about who is at risk from pneumonitis.
I plan to Google this to learn more and also ask my doctor. It may not be known who is at risk for pneumonitis and just be random but if there are any factors that increase the risk, I want to learn more about it. Thanks again!
 

Gingergrrl

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It is not so much a matter of classification as a matter of whether it suppresses protective immunity - so it depends on what the drug is.
So would taking the steroid as a pre-med with RTX therefore further suppress protective immunity? In my case, I am going to have to take a steroid as a pre-med (assuming I can get RTX) b/c of the potential allergic risk.
 

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?
 
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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.
 

deleder2k

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@Jonathan Edwards, what about weight gain? Quite a few patients treated claims that the cortisone have made some of them gain 10-15 KG in a month or two. I think they're getting either 100 mg or 125 mg of IV Solu-Medrol (Methylprednisolone). Could that really be? I know that weight gain can be an issue when given regularly in high doses, but I didn't imagine that doses like this given at day 0, 14, and then every third month could lead to major weight gain. The reports are just anecdotes.
 
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@Jonathan Edwards, what about weight gain? Quite a few patients treated claims that the cortisone have made some of them gain 10-15 KG in a month or two. I think they're getting either 100 mg or 125 mg of IV Solu-Medrol (Methylprednisolone). Could that really be? I know that weight gain can be an issue when given regularly in high doses, but I didn't imagine that doses like this given at day 0, 14, and then every third month could lead to major weight gain. The reports are just anecdotes.
No, I have never seen weight gain with premed Solu-Medrol like this and it would make no sense since the half life of the steroid is no more than a day or so at most.
 

Gingergrrl

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I'm usually on 25 mgs cortisol per day
I take 15 mg of Cortef per day for almost two years (it was originally started to try to control MCAS reactions and anaphylaxis b/c we were desperate to try anything at that time). Although I have reacted badly to other steroids, I have never had a bad reaction to Cortef and for now am advised to continue w/it. My doctor does not feel it would negatively impact trying RTX which matches w/what Dr. Edwards is saying. I have never taken prednisone (and am hesitant to try it) but if it is needed in order to make RTX safer, and decrease risk of allergic reactions and side effects, I would definitely do it since you'd only need it twice on day 0 and 14 (from my understanding).
 

deleder2k

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I take 15 mg of Cortef per day for almost two years (it was originally started to try to control MCAS reactions and anaphylaxis b/c we were desperate to try anything at that time). Although I have reacted badly to other steroids, I have never had a bad reaction to Cortef and for now am advised to continue w/it. My doctor does not feel it would negatively impact trying RTX which matches w/what Dr. Edwards is saying. I have never taken prednisone (and am hesitant to try it) but if it is needed in order to make RTX safer, and decrease risk of allergic reactions and side effects, I would definitely do it since you'd only need it twice on day 0 and 14 (from my understanding).
You get glucocorticoids before every infusion, but i wouldn't worry about that.
 

Gingergrrl

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You get glucocorticoids before every infusion, but i wouldn't worry about that.
@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)!
 

Gingergrrl

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I do not think it would make any significant difference. Opportunistic infections do not occur in people taking steroid doses of that sort.
@Jonathan Edwards I think I missed your reply and wanted to follow-up. So, in your experience with RTX, if someone was taking a daily low dose of Cortef, this would not increase their chances of getting an opportunistic infection with RTX?

When I took Decadron post-IVIG, I ended up getting a staph infection behind my ear (which totally resolved w/an antibiotic cream) but my doctors all felt it was connected b/c it had never happened to me before. I had other problems from the Decadron as well and have never taken it since (around Aug or Sept 2016).