Rituxan has helped me !

[msf]

That's why I wrote 'for ME patients.' Since many think that ME is a result of chronic infection, the long-term effects may quite different from those it has in cancer and RA patients.

 

[barbc56]

That's why I wrote 'for ME patients.' Since many think that ME is a result of chronic infection, the long-term effects may quite different from those it has in cancer and RA patients.

I highlighted the portion of my post about our population.

Thanks.

Barb

 

[msf]

That wasn't the part I was referring to, it was the part where you said you hoped that the long-term effects would be known because of its use in cancer and RA. I pointed out that because of the possibility that ME patients have chronic infections, this might not be very relevant.

 

[Rebecca2z]

I am so glad you posted, Rebecca2z. I've been carefully watching the old thread in "Introduce Yourself", waiting for an update. My wife just asked me yesterday if I had seen anything further regarding your condition, and I told her I was feeling that it wasn't good, because it had been so long, and in your last post you seemed to be coming down off the steroids. I'm very happy I was wrong and you are doing well. Please be careful and don't over do it, tempting as it may be. Also, please let us know from time to time how things progress.

Thank You for your kind words, every day I get up and I am feeling better. I did a very rigorous hike yesterday, up and down some very steep embankments. This is so better of a life !

 

[Rebecca2z]

So incredibly happy for you!!!! I was worried when we hadn't heard from you in a it so this is a relief. I would love to be able to get Rituxan someday but in Canada it's only approved for severe cases of Rheumatoid Arthritis, cancers etc. , otherwise it's thousands $$ per infusion. Crazy! Please keep posting, good or bad, it's so very helpful to all of us. Yippee Hooray for Rebecca!!!

Thank You ! The company Genentec does have a great offer of helping with the cost and getting the prescriptions for issues other than RA etc, you should contact them. http://www.genentech-access.com/rit...t-jPjjTPtcJl8LMI2jOmJgEemykjFt5oI6xoCWWTw_wcB

 

[Rebecca2z]

Hey Thank You all for your awesome support. I am very excited about the improvements in my life. This is so much better ! No headaches, appetite is back, no stomach pain after eating, best yet is the let up on the fatigue and weakness. My lupus sores are all gone, the improvements go on and on. I am not bed ridden now !

OMG can't the researchers figure this out ASAP. My god the suffering that I have been going through and the suffering of so many others might be relieved from this drug is so great.
I am very grateful I had the opportunity to try this, and my hope is that others can have this opportunity if they want it.

On the down side I have not noticed much change (yet) in my autonomic system such as my low blood pressure, sweating and small fiber neuropathy. My breathing is way better though.

Just being able to get dressed, fix my hair, put on make up and go somewhere besides BED is life changing !

 

[deleder2k]

So, it looks as though the good effects kicked in at about 2 1/2 months from @Rebecca2z's first rituximab infusion. That seems to be inline with the timing for the earliest responders in the Norwegian trials, if I understand correctly. (@deleder2k?)

2 1/2 months is rather normal. Looks like average response time for major responders is around 5 months from the first infusion.

 

[geraldt52]

That delayed response makes me think the depleted B-cells are being replaced with cells from bone marrow before you feel improvement. This is at least consistent with the idea that those cells may be infected, and stem cells in bone marrow are not. This would lead to a prediction: Rituximab therapy would be most effective in people who have had onset in the last few years, but would not be effective if cells in bone marrow have been infected, as happens in some long-term diseases.

I get the rationale behind your prediction, anciendaze, but my recollection is that Rebecca2z had been very sick for a very long time. Her response, so far, to Rituximab doesn't seem to square with your prediction. I always enjoy your posts...have any further thoughts?

 

[Gingergrrl]

@Rebecca2z I am so happy for you and relieved to hear that you are not only doing okay but doing so well!!!

I was curious, at any point in your illness did you have MCAS (mast cell activation disorder) and curious how that component does with something like Rituxan- if you or anyone else knows?

 

[Rebecca2z]

Yes I was dx with CEBV by UCLA in 1980 (something) have struggled with being bed ridden from it right from the start.
I then had about a 10 year period of not being so bed ridden, but still struggled everyday with fatigue, headaches and weakness.
When I became sick in the 80's I lost 25 pounds, ran a fever of 102 for 2 years, then that became a sub-temp of 96.8 - where it currently remains. Severe severe sore throats. Had 4 very large lymph nodes removed and had severe candida - which remains with me to this day. I could not even get in the shower I was so weak and fatigued. My mental clarity was gone, got extremely mixed up with going to normal places, lots of confusion. The fatigue has been the most debilitating aspect of my problems.

Jump ahead to now..Only in the last 5 years have other auto-immune diseases appeared. I have two siblings with auto-immune diseases (different from mine)

So yes the Rituxan has changed my life and I have been very ill for a very very long time.

I just want to keep it real because I want those people who have been suffering for years to not give up hope.
It is hard to say what and why in my case the Rituxan has worked. But time does not seem to be a factor in my situation.

My fatigue, weakness and mental clarity are noticeably better.

Having the fatigue gone is so life changing. You know you go so long like this you wonder is this in my head, I need to push harder, get out bed. You wonder is this depression? It really messes with your head.
But it doesn't work like that, I am not depressed and never have been, I can see clearly now, ( ♪ ♫ ♩)
my body was doing this to me not my head!

 

[Rebecca2z]

Hi @Gingergrrl , Thank you ! Oh yes I am WAY BETTER .
I have never had any doctor mention this mast cell, I don't really know anything about it.
Be interesting to know what others think.

 

[anciendaze]

I get the rationale behind your prediction, anciendaze, but my recollection is that Rebecca2z had been very sick for a very long time. Her response, so far, to Rituximab doesn't seem to square with your prediction. I always enjoy your posts...have any further thoughts?

If her immune system has been fighting itself, yet succeeded in preventing infection of stem cells in bone marrow, this would be a reasonable outcome, even in a long-term patient. Unfortunately, we don't know what is going on in detail, and we can't measure much of anything except time since onset of symptoms or clinical signs. We are dealing with statistical correlations rather than causes at this stage of ignorance. You can't do much statistical reasoning with a sample of one.

I was only suggesting, based on that hypothesis, that this would be a trend I would expect to see if we looked at many cases, not a hard and fast rule. If this did not turn up in such data, it would weaken support for that hypothesis.

I'm beginning to believe a range of pathologies, including "autoimmune" disorders, are caused by defective function of particular classes of immune cells we may not even be identifying. (Almost every week now, research turns up some distinction about immune cells we had not previously known.) The symptoms and signs doctors see would then depend on how the undamaged parts of the immune system cope with this problem. If different signs predominate the problem would be classified as a different disease, even if the ultimate cause turned out to be the same. (An historical parallel might be the old distinction between phthisis and scrofula. Both are often caused by infection with mycobacterium tuberculosis.)

The one class of diseases where we have a pretty good idea something is seriously wrong with immune function of specific cells are leukemias/lymphomas. In those cases there is no question that depleting specific kinds of immune cells produces improvement, but we seldom hit precisely the right target. In those cases where we do hit the right target, the results are like magic. These are also diseases where infection of bone marrow with common viruses leads to a poor prognosis.

 

[morse27]

Hi @Gingergrrl , Thank you ! Oh yes I am WAY BETTER .
I have never had any doctor mention this mast cell, I don't really know anything about it.
Be interesting to know what others think.

Thank you for your testimony Rebecca2z,

few people treated with Rituximab wish to declare the profit on their health, those of Norway include in CT3 does not have the right for the confidential nature of the study.
thank you, it gives hope for sick patients,
for my part no miracle after 5 months of the first infusion,but i'm special case with high NK cell , common on WGI veterans
yvon

 

[Jill]

Yes I was dx with CEBV by UCLA in 1980 (something) have struggled with being bed ridden from it right from the start.
I then had about a 10 year period of not being so bed ridden, but still struggled everyday with fatigue, headaches and weakness.
When I became sick in the 80's I lost 25 pounds, ran a fever of 102 for 2 years, then that became a sub-temp of 96.8 - where it currently remains. Severe severe sore throats. Had 4 very large lymph nodes removed and had severe candida - which remains with me to this day. I could not even get in the shower I was so weak and fatigued. My mental clarity was gone, got extremely mixed up with going to normal places, lots of confusion. The fatigue has been the most debilitating aspect of my problems.

Jump ahead to now..Only in the last 5 years have other auto-immune diseases appeared. I have two siblings with auto-immune diseases (different from mine)

So yes the Rituxan has changed my life and I have been very ill for a very very long time.

I just want to keep it real because I want those people who have been suffering for years to not give up hope.
It is hard to say what and why in my case the Rituxan has worked. But time does not seem to be a factor in my situation.

My fatigue, weakness and mental clarity are noticeably better.

Having the fatigue gone is so life changing. You know you go so long like this you wonder is this in my head, I need to push harder, get out bed. You wonder is this depression? It really messes with your head.
But it doesn't work like that, I am not depressed and never have been, I can see clearly now, ( ♪ ♫ ♩)
my body was doing this to me not my head!

Hi Rebecca, thank you so much for sharing your story and your success. It gives us old timers hope! Can I ask, how did you get the rituxan ? Who is your doctor? Many thanks Jill

 

[trails]

Is Rituxan the same drug as Rituximab?

 

[Daffodil]

Is Rituxan the same drug as Rituximab?

yes

 

[Daffodil]

i'm a little confused...i remember reading that rebecca improved a lot on rituxan but then crashed again? is this a new improvement with continued use of the drug? sorry my memory is non existent
thanks

 

[Gingergrrl]

i'm a little confused...i remember reading that rebecca improved a lot on rituxan but then crashed again? is this a new improvement with continued use of the drug? sorry my memory is non existent
thanks

@Daffodil I am unclear too and am hoping that @Rebecca2z will post an update for us in the future as we are all so curious to hear how you are doing Rebecca!!!