Emotional fallout rituxamib

S

Sallycatherineharris

Established Member
I haven’t seen much from others but I am sure like others I’m pretty devastated by the lack of success from the Norweigan rituxamib final clinical trial.

For me it was the timing but I had kept too much hope pinned on the results. The timing was a shock as of course I had thought I had to wait until next year.

My plan had been to either see if there was to be a UK clinical trial and / or travel to Norway for private treatment after remortgaging the house. I was nervous of making that decision and knew of course it may not have worked for me.

Part of my devastation comes from the fact that I have been deteriorating each and every year but particularly in the past 3 years. I’m lucky that I’m not totally bed bound but 70% I think. I think hope has been so important that it is gutting to have it taken away.

However I am lucky in having had 40 years of normal living and just 12 of ME. I also have a great family and supportive friends plus we have a lovely home. But at present the future looks bleak and black.

I am on new medication since the summer that gave me some relief from some of the horrendous symptoms but I’m having more particularly grim days where I’m just in agony. Ad I’m in my 50s and feel I’ll have ME forever and no idea what this will mean as I age but probably not a great outlook.

Knowing how I feel and how desperate it can be I do worry about others who may have had rituxamib as a beacon of light. I know there are so many sufferers out there much more isolated, sicker and vulnerable.

I’ve no idea how to reach out but I will keep a look out for those more vulnerable sufferers and hope others can as well.

Let’s hope something else turns up soon to give some new hope.

Take care

Sally x
 
Best wishes to everyone on this.

I thought it was pretty unlikely to be an effective treatment for me personally, as I was assuming it would be a null result, although with a substantial chance of finding a positive effect for a sub-group of patients. But even with that scepticism, I still saw it as a slight chance of soon getting a genuinely effective treatment, and losing that slight chance is disappointing. Also, a positive result would have made so many of the political issues around ME/CFS easier, so even if I didn't get an effective treatment, that would have been still great. Losing a significant chance for a breakthrough there is a real disappointment, and I did feel worse about it than I expected for a bit. LOL - writing this out has made me feel more down about it again!

Ah well. There are still other positive signs around, and still things we can do to try to make things better, although I think that with the Rituximab null result progress is going to be slower and a lot more work than it could have been.
 
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Yes I’ve been feeling unusually low since the news, in a way that is out of character for me. Partly it was the unexpected timing. I didn’t have a chance to talk myself through possible disappointment, I just suddenly saw the update :(

I blogged about my current emotions and dealing with disappointment (not just specific to rituximab) https://tipsforme.wordpress.com/2017/11/24/attacked-by-hope/

I also worry about our collective low mood. If anyone wants to talk to someone supportive but uninvolved:


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You can also email ME Connect on meconnect@meassociation.org.uk This is a good way of getting through to our medical and dental advisers. But otherwise this service is limited to giving factual information and to directing people to other sources of information
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Samaritans (you can just be feeling low): 116 123

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The goal of counselors on crisis lines is to help you cope with how you are feeling, and help you figure out what (if anything) you can do for help. Calls are confidential, and you decide how much information to share with the counselors. You do not have to be suicidal to call.
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http://occupyme.net/2017/11/05/crisis-and-suicide/
 
Hi - thanks for starting this thread @Sallycatherineharris

I find it hard to describe how the news affected me. It was surprising and actually shocking. I have not been one to seek the elusive holy grail. For 9 years I did supplements etc with some degree of acceptance of the illness and belief there would be some improvement with enough effort. I began antivirals in May.

But last year I was diagnosed with a heart valve problem now needing surgery; my plan was to do that and then gather money to do r'mab. I am 70 so need results soon.
So my perspective had changed. I needed a result so this has been a blow.

I still think there may be a place for acceptance ( not for the heart valve for which there is treatment), but do I spend the rest of my life seeking treatments or do I accept what is? As I said the perspective has has changed. I was ok before with making the best of things. I rested a lot, a huge lot, but I had enough energy to walk in a swimming pool occasionally ( not now) and I paced carefully, very carefully.

But I am now not content. I have to have heart valve surgery and there is no hope for ME treatment in the offing. I am disappointed hugely. No hope to have a life on retirement. I am very aware thst many very much younger people have their hopes and dreams having had so much less of life. I was always grateful for what I had had but it doesn't feel the same.

I have to let go of hopes of treatment. That is very hard.
 
Binkie4 said:
but do I spend the rest of my life seeking treatments or do I accept what is?
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Social Media would explode if a treatment comes about so spending money, time, and our oh so precious energy really isn't necessary. When I first read it I was like, Oh, no. But I got over it within seconds and remembered there were those on Twitter not believing it would be effective.

Unfortunately, I think Rituximab is mentioned in 'Unrest'. I wish Jen would talk more about her antivirals and which ones she is using (I think she is on Ampligen) but she says she doesn't want to because for some it just does not work and there are those who have gotten worse but still, it works on enough #PwME that I think it is worth the mention.
 
As someone who tends to have adverse reactions to many even quite mild drugs, and being quite old, I thought it very unlikely that I would ever have access to Rituximab, so was not disappointed for my own health. However, I was very disappointed on behalf of others who I hoped would benefit.

I also was disappointed particularly because if a drug used for physical illnesses had been shown to be effective, it would have provided strong evidence for ME being a physical, not a mental condition, and provided pointers to other, possibly less powerful treatments that might have helped. I feel sure the evidence that it worked would have persuaded my GP to take ME more seriously.
 
Well, I'm really glad for y'all who didn't pin your hopes on Rituxan...

BUT

Four years ago when they started this study, I was getting worse. I knew intellectually that it was a bad idea to get excited about this study because it's so so so common to see a large treatment effect in a small study that disappears when studied in a much larger group of patients. But I didn't care. I just needed hope.

In the intervening 4 years, I've continued to deteriorate. My step count is down to approximately 300 steps a day. In 2015 I started having seizure-like/dystonic episodes that have not gone away like they did when I had them in 2002 and 2011 (I was able to pace my way back to some amount of improvement both of those times). My sensory sensitivities are such that I can't open the blinds in my bedroom much of the time (despite having a stunning view). I leave my apartment only a couple of times a year (and, of course, pay when I do). I can spend less and less time online. I live alone but then I can't tolerate a lot of people being around. I'm increasingly incontinent, though whether that's just being a middle aged woman or disease-related is anyone's guess. And this year I've developed gastroparesis in addition to everything else (including IBS, GERD, POTS, EDS, Fibro, etc. though I still remain morbidly obese even though I can't physically eat much), so even what little bit of pleasure I might get from, say, chocolate, is now severely limited.

And there's little hope for treatment on the horizon in the next 5 years. Indeed if we have to go the route of figuring out the pathophysiology and then find a drug to fix that, we're looking at another 20 years. At least.

Yes, it was stupid of me to put that much hope in Rituxan. It's like getting the credit card bill after a shopping spree from awhile back. But I'm not sure it's really helpful for those who are having a hard time with this emotionally to hear from everyone who was smart enough not to put their hopes on this. Nor do I think this would be helpful thread if it's just a giant pity party either.

I will say I'm crying less. Somewhere in my subconscious, I have been working through the notion that I have to accept that this bedroom is my present and likely my future. That after 19 years, I have to stop talking about "when I get better." But I'm still working on the tougher stuff, like, will I have to watch from afar yet another niece grow up who barely knows who I am? Will I ever, like, get to have sex again? Hell, should I sell the fabric in my fabric stash because it's unlikely I'll ever sew again? Okay, forget the part about "I'm crying less..."

I suppose in many ways, the Rituxan study was a way to defer dealing with these central questions. Or really, mostly just the "when I get better" question. And if this is it, if so many of us are going to be living this disabled for years to come, we have to fight more for better accommodations for the severely ill. Social services are failing us. Even people like me who have amazing case workers and GPs.
 
I don't know if this will be helpful to anyone but felt compelled to post it. As much as I also wanted the study to be positive b/c Rituximab is helping me and I wanted it to help others, I am not totally surprised that it was negative. I am currently talking with 4-5 people who have had a positive response to Rituximab, but all of them fit the autoimmune profile. And since none of them have shared this publicly, except for one on the other board, I have to honor their privacy. But I am not the only person that it has helped.

My opinion is that this illness either has sub-groups or we represent illnesses that are different but share a lot of overlapping features. I think if anyone really wants to pursue if they might be a responder to Rituximab, they should get some auto-antibody testing done. If all auto-antibodies are negative, I do not think it is worth the risk. If you test positive for all kinds of insane auto-antibodies like I did, I think it is worth discussing with your doctor... and at least within the US, it is possible to get it approved by insurance off label. The other option is going to Kolibri or OMI (but I am not endorsing this and it is of course very expensive).

Another option, for anyone who thinks they might be a responder and fits the autoimmune profile, is to pursue high dose IVIG for auto-immunity. My doctor felt if I was a responder to the IVIG, this increased the chances that I might be a responder to Ritux and he was completely right. IVIG is also challenging to get insurance approval in the US, but it absolutely can be done.
 
Gingergrrl said:
My opinion is that this illness either has sub-groups or we represent illnesses that are different but share a lot of overlapping features. I think if anyone really wants to pursue if they might be a responder to Rituximab, they should get some auto-antibody testing done. If all auto-antibodies are negative, I do not think it is worth the risk. If you test positive for all kinds of insane auto-antibodies like I did, I think it is worth discussing with your doctor.
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I would copy and paste this into a brochure for ME/CFS patients. I was not very interested in pursuing it if it was positive (long story) but it would have provided a useful piece of information about the disease mechanism, if it was all one disease. I suspect you are completely correct, its a peripherally related but different disease mechanism and if its the same profile as yours i suspect it will be effective. I noticed early on some forum members had auto immune/allergic/chemical sensitivities that i don't and i suspect if researched further Rituximab will treat these patients very effectively, but for the rest of us it appears not to :(
As i mentioned in the other thread i hope they realize this and pursue it, if 30% or whatever percent can be treated successfully i would like to see it being done instead of forgotten.
 
I really hope that the study does uncover some clues, despite the negative overall finding. I was certainly pinning my hopes on rituximab
so I’m really disappointed. Having said that, in NZ I am not sure if/when it might have been available even if the study had been positive. I’m positive for a number of auto-antibodies but doctors have just looked at me like I’m crazy when I’ve mentioned IVIG.

I still think something will come along before I get too decrepit to benefit! That’s probably the triumph of hope over reason, but I like it that way. I’m not going to give up my dream of ‘one day I will be able to.....’
 
For some reason after a few days of tears I am feeling a little better ... well for a few minutes although it could be that the grim ME is mild at this minute and as it is emerging horrendously and strongly each and every day I’ll enjoy the minutes of respite.

I certainly feel like taking a back seat and cruising for a while. I had put hopes into rituxamib so planning finances, flying to Norway and ongoing cost. But this has gone.

I for sure am pretty depressed and find it hard to imagine being able to live with the grim level of ME that dominates 24/7 except for these 5 minutes. As resting does not prevent me getting b worse I’m going to try and do a bit of writing a few times a week however I’m feeling as when I feel passionate or totally absorbed I can sometimes mask the symptoms. Yes I will pay for it but if I can feel I’m accomplishing something.

I have no idea how to cope for the long term. The only thing I’ve drastically managed to change is my weight and although it’s a huge battle I’m determined that I will keep control of this even if I cannot control the ME. I love all food and defo chocolate so it is a struggle but I weigh less than pre ME but am floppy with it. A sister in law told me I look toned a few weeks ago ... she had no idea I cannot exert but it was the sporty leggings and looking slim that misled her!!!

I think I and if they find it helps others should have a good rant and vent on here or elsewhere. I defo want to keep an eye out for others who are struggling and see if we can together find a way forward.

Hugs

Sallu x
 
Michelle,

I really feel for you but I too put all my eggs in one basket with rituxamib whatever my brain said. I’m into my 11th year and realised that this is now over a third of my adult life. It is horrible, unfair, the pits, rubbish and just the worst having this grim illness.

I’m glad you have a stunning view but sorry you don’t get to see it. I’m not so isolated and so much admire that you have coped for all these years especially with your other challenges. I’m glad you have a great support worker. Every little thing helps that’s for sure.

Although I was diagnosed in 2006 I only saw an ME expert about 2 years ago for the first time and cried that at last someone really understood. He and his team have helped me immensely.

Please don’t get rid of your sewing. I’m trying to learn to travel in my mind more doing things that I used to do in my imagination. This is as a result of seeing Jessica in Unrest and when asked how she coped she talked about swimming underwater with beautiful fish etc around her. Keep hold and replay maybe those memories of your sewing and what you achieved then.

I have a key achievement that I hold and reply when I was extremely fit and was offered an amazing job that encompassed and would use all my humanitarian experience and skills. I felt I could achieve anything at that time. I do of course realise that this now is not possible but I refuse to let go of that strong emotion if held in my mind.

I certainly need to regroup and am taking a break from pursuing new medical avenues for now.

Do contact me if you want to chat privately or otherwise.

Hugs. Sally xx
http://simmaronresearch.com/2017/11/norwegian-rituximab-chronic-fatigue-syndrome-mecfs-trial-fails/

Michelle said:
Well, I'm really glad for y'all who didn't pin your hopes on Rituxan...

BUT

Four years ago when they started this study, I was getting worse. I knew intellectually that it was a bad idea to get excited about this study because it's so so so common to see a large treatment effect in a small study that disappears when studied in a much larger group of patients. But I didn't care. I just needed hope.

In the intervening 4 years, I've continued to deteriorate. My step count is down to approximately 300 steps a day. In 2015 I started having seizure-like/dystonic episodes that have not gone away like they did when I had them in 2002 and 2011 (I was able to pace my way back to some amount of improvement both of those times). My sensory sensitivities are such that I can't open the blinds in my bedroom much of the time (despite having a stunning view). I leave my apartment only a couple of times a year (and, of course, pay when I do). I can spend less and less time online. I live alone but then I can't tolerate a lot of people being around. I'm increasingly incontinent, though whether that's just being a middle aged woman or disease-related is anyone's guess. And this year I've developed gastroparesis in addition to everything else (including IBS, GERD, POTS, EDS, Fibro, etc. though I still remain morbidly obese even though I can't physically eat much), so even what little bit of pleasure I might get from, say, chocolate, is now severely limited.

And there's little hope for treatment on the horizon in the next 5 years. Indeed if we have to go the route of figuring out the pathophysiology and then find a drug to fix that, we're looking at another 20 years. At least.

Yes, it was stupid of me to put that much hope in Rituxan. It's like getting the credit card bill after a shopping spree from awhile back. But I'm not sure it's really helpful for those who are having a hard time with this emotionally to hear from everyone who was smart enough not to put their hopes on this. Nor do I think this would be helpful thread if it's just a giant pity party either.

I will say I'm crying less. Somewhere in my subconscious, I have been working through the notion that I have to accept that this bedroom is my present and likely my future. That after 19 years, I have to stop talking about "when I get better." But I'm still working on the tougher stuff, like, will I have to watch from afar yet another niece grow up who barely knows who I am? Will I ever, like, get to have sex again? Hell, should I sell the fabric in my fabric stash because it's unlikely I'll ever sew again? Okay, forget the part about "I'm crying less..."

I suppose in many ways, the Rituxan study was a way to defer dealing with these central questions. Or really, mostly just the "when I get better" question. And if this is it, if so many of us are going to be living this disabled for years to come, we have to fight more for better accommodations for the severely ill. Social services are failing us. Even people like me who have amazing case workers and GPs.
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Alvin said:
I suspect you are completely correct, its a peripherally related but different disease mechanism and if its the same profile as yours i suspect it will be effective.
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This is what I suspect but I wish I knew more science so my case could be useful to the researchers.

Alvin said:
As i mentioned in the other thread i hope they realize this and pursue it, if 30% or whatever percent can be treated successfully i would like to see it being done instead of forgotten.
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I hope so, too, and I believe there are a group of responders and if they can figure out who is in that group, then other very sick people could be helped. I hope they do not discard the entire study if there is something useful within it that can be expanded upon.
 
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