GOOD things happening!! Am I a responder???

[Jacque]

Here's the first one about Elene: http://bergento.no/?page_id=3242&preview=true
She says she had no response for 6 months then "when both she and the researchers were beginning to loose courage, something suddenly happened. And it happened fast." Very different from Jacque's quick onset of effects.

Then relapse after 4 months, then durable remission for years with maintenance infusions.

So I am one month post 2nd infusion and the flu like symptoms seem to be crreeeeeping back... headachey...more nerve pain ... will see how the next week goes.

 

[ukxmrv]

Sorry to hear that Jacque! Lots to hope for still with this treatment given the past month.

Must be satisfying to have reacted so strongly

 

[Jacque]

Sorry to hear that Jacque! Lots to hope for still with this treatment given the past month.

Must be satisfying to have reacted so strongly

Yes.....it is...but I so feel like that mouse on your pic... how appropriate!!! I definately KNOW from the last few weeks off the couch that I am zeroing in on my target...that is for sure... I am just not gettin any younger and would like to do a little livin before I am 70!!! Is that too much to ask????? sheeeeesh

 

[ukxmrv]

I really know how you feel Jacque. Our lives are slipping. I keep thinking of the 70's as being the new 50's though.

Will keep following your progress.

 

[Jacque]

I have been contacted by quite a few of you wondering how it is going... I am going to post weekly unless something earth shattering occurs!

I am about 38 days post 2nd Rituxan infusion... I recently had two weeks of being off this friggin couch and I LOVED it... I still had pain but butt kickin flu/hangover symptoms were almost gone. I was back to having a very clean house, car, laundry basket, and was even cooking and going to town a few times a week...

And then .... the crap came a creeeeepin back in. Felt sharp pains and tenderness in lymph nodes in my neck, severe bone pain, headachey ... Thought at first I was comin down with something but now after about 4 days of this and the last 3 mostly warmin this ugly couch...I am now realizing my immune system is back to its old tricks ..I guess. I don't really understand how all of this works...all I know is I feel like I have the flu again and can't get off the couch and all I can do is exist and watch movies during the day...

So my last post brought me to tears cuz it felt so good to be somewhat among the living ... and now this post making me misty eyed bc I feel like I am back among the dead...

Friends called yesterday and today to ask me to do things...to which I had to tell them I am sick again...and they said..."well I thought it was working"...you were doing so good last weekend... to which I replied..."well that was last weekend".

I am having a pity party because I am realizing that even when I am doing better I can't tell anyone but ..you all...cuz NO ONE understands...and it is just gonna be easier to remain a HERMIT... And secondly Im feeling anxious about being in my 50s and just seeing the years flow by ... only to see less $$ in my bank account and being more sick. I am having a REALLY tough time being positive right now...and I hesitated to write this tonite... but some of you want to know how it goes and maybe someday I will be well, and this post will give someone the courage to go the distance.

I am holding on to the fact that I had a real reduction of fatigue and flu like symptoms and am staying focused on the fact that I am getting closer to the target... I just feel anxious cuz this therapy will be damn near 2 years...and if that doesn't work then what... I have my next infusion the beginning of Oct.

I have fought and been patient for 35 years...and patience is NOT one of my virtues...

You never realize how strong you are ... until being STRONG is your only choice!

Onward!! Jac

 

[ukxmrv]

Jac, It sounds as if the program will need fine-tuning but over time I hope that these wonderful good periods increase and the horrible ones get less and less.

You are right that our lives are flowing by.I feel like that right now. It's been nearly 30 years of waiting for a cure for me. The odd glimmer of hope here and there (the MAF314 was pretty good for me) but with the fear that it might not work long term or even medium term.

We have been waiting for a long time now and in a far better position than 35, 30, 25 years ago. We want to be there though.

 

[Jacque]

Jac, It sounds as if the program will need fine-tuning but over time I hope that these wonderful good periods increase and the horrible ones get less and less.

You are right that our lives are flowing by.I feel like that right now. It's been nearly 30 years of waiting for a cure for me. The odd glimmer of hope here and there (the MAF314 was pretty good for me) but with the fear that it might not work long term or even medium term.

We have been waiting for a long time now and in a far better position than 35, 30, 25 years ago. We want to be there though.

Have not read on the MAF314... How do we even have an ounce of sanity left???? sigh... maybe we don't...

 

[taniaaust1]

Im with what the other said.. maybe it just needs some fine tuning.. maybe you just did too much too fast. I myself find that for myself it can take up to 3 weeks at a certain activity level before I can be sure that the ME/CFS is okay with me functioning at that activity level.

(with small increase I can be fine first week, fine second week, seem fine third week but then suddenly crash and that activity level will follow that pattern of my body only being able to handle that level for a few weeks. Your body may have similar patterns of time periods, it may of seemed be okay at the level you tried but in the end your body may be going "too much, I cant handle this!!!" and throwing you back into that ditch.
If so just keep the regular activity level a bit lower once you are a back to increasing activity again.. Find a stable level your body can truely handle more then short term. The substainable level is usually less then what ones short term ability is.

Rest up and you probably will improve again.. watch out that you dont get yourself in those cycles where you keep crashing regularly as crashing can be unpredictable when it occurs.

 

[Jacque]

Don't know about the fine tuning? How sad tho that we felt I did too much too fast... and what I did was stay vertical, clean house, and go to town a few times... Arrrrrgh how insane is that huh? As far as a "crash" I don't now if I feel like that is what that is...when I look at my planner this was a gradual increase in symptoms over the last week, after two weeks of more good days than bad. Stabbing pains and aching nodes tells me immune is goin wacko again...and is that because enuf time has lapsed where I have a whole new batch of B Cells that have come back.. Gawd I feel like I need a degree in immunology to understand what is goin on. sigh

 

[taniaaust1]

ah ok .. I guess that makes sense. I dont know about B Cells. How often do you have to get those infusions to keep them at bay?

 

[maddietod]

How horribly frustrating. I'm sorry, and also very grateful that you post even when you feel miserable.

Have your doctors given you any useful information about this process? I agree that we always seem to need degrees in everything to understand our peaks and crashes.........but isn't that really the doctors' jobs? Aargh! I have this crazy hope that there's a number you can call, and they'll say "Oh, sorry, here's the range of typical reactions...."

Thanks for so generously sharing your experiences.

Madie

 

[jeffrez]

Could just be a temporary setback - the immune system can be very fickle! But if you were better once, that proves you can be better again. You were really pushing it, too, it seems, so maybe you just need more rest while going through the process. Give it time, try not to project into an unknown future (you're only projecting your fears and disappointment from now, so of course it will look bleak), and be thankful for at least a couple weeks of respite! ;-)

 

[Sherlock]

Stabbing pains and aching nodes tells me immune is goin wacko again...and is that because enuf time has lapsed where I have a whole new batch of B Cells that have come back..

Now that's a good point about the nodes aching. They normally can get sore/tender when the B Cells and T Cells inside multiply to fight off an infection. When they stretch the surrounding 'capsule' of the node, that causes pain. At this point, it might be only the T Cells proliferating. I'd call Kogelnik and ask him to fax an order for a blood test to count B Cells. The results should be very interesting. (It'd be even more interesting if you also got a count of NKs, to see if their numbers have gone back down yet. Does the study pay for all blood tests?)

My guess is that you have a virus cold, an ordinary rhinovirus. Maybe overdoing things made you susceptible, as it does for any ordinary person.

(The KillerT Cells proliferate inside nodes, then travel out into the body. They sort of frisk other cells that they encounter. If they determine that any cell has a virus inside of it, then they kill the cell.)

 

[Tammy]

Jacque.....I am so sorry to hear about the way you are feeling. I wish I had the gift of words that could comfort you right now. Just know of course how much we all care about you and understand. Man........this really sucks. Sending you the mother of all Hugs. Tammy

 

[SOC]

Jacque -- are you getting antivirals along with the Ritux? If not, could it be that some latent viruses are reactivating now that you don't have the B-cells? Isn't reactivating viruses a common problem with B-cell depletion therapy?

A thought -- maybe you had a honeymoon period where the depletion of B-cells reduced the autoimmune effect, but your infections hadn't become seriously active. Perhaps you are having a period (before your new, healthier B-cells are running around) during which the viruses are winning the battle. However, once your B-cells build up again they will win the battle (and the war) against the viruses.

Good luck and thanks for reporting how the Ritux is working.

 

[alex3619]

Hi Jacque, this is exactly what I expect to see from a responder. If my understanding is right (and it might not be) then every dose will see a longer and more powerful remission period. I am hoping that with enough doses that remission can become permanent.

My suspicion, nothing like a certainty, is that duration of illness will increase the number of courses of rituximab needed for treatment.

I am hoping the next dose may see a major improvement over the current one.

The idea that an awakening Th1 immune system might be causing some of your problems is a good one. That would include T cells, not just NK cells, and probably macrophages.

Best wishes, Alex.

 

[Jacque]

Hi Jacque, this is exactly what I expect to see from a responder. If my understanding is right (and it might not be) then every dose will see a longer and more powerful remission period. I am hoping that with enough doses that remission can become permanent.

My suspicion, nothing like a certainty, is that duration of illness will increase the number of courses of rituximab needed for treatment.

I am hoping the next dose may see a major improvement over the current one.

The idea that an awakening Th1 immune system might be causing some of your problems is a good one. That would include T cells, not just NK cells, and probably macrophages.

Best wishes, Alex.

Ok.... your message gives me hope... this is my first time online today... completely HORIZONTAL again... and HATN it... And if I have been ill for 35 of my 51 years I wonder what that means for me in relation to how many infusions will be necessary... Well as always I am being forced to live in the GRAY zone...when I am a BLACK or WHITE kinda person...

 

[Jacque]

Now that's a good point about the nodes aching. They normally can get sore/tender when the B Cells and T Cells inside multiply to fight off an infection. When they stretch the surrounding 'capsule' of the node, that causes pain. At this point, it might be only the T Cells proliferating. I'd call Kogelnik and ask him to fax an order for a blood test to count B Cells. The results should be very interesting. (It'd be even more interesting if you also got a count of NKs, to see if their numbers have gone back down yet. Does the study pay for all blood tests?)

My guess is that you have a virus cold, an ordinary rhinovirus. Maybe overdoing things made you susceptible, as it does for any ordinary person.

(The KillerT Cells proliferate inside nodes, then travel out into the body. They sort of frisk other cells that they encounter. If they determine that any cell has a virus inside of it, then they kill the cell.)

I would love to think I have a cold or something...but if I DO it is unlike any cold I have had in 51 years... No sore throat, stuffy nose, etc... But what I have had my ENTIRE life is ... THIS.... Feeling like I am comin down with something, yet never really do and that feeling waxes and wanes from day to day, month to month. Like I have a terminal flu... It is this EXACT feeling that I have been noticing was pretty much GONE...which then enabled me to be vertical, do the dishes, and stuff everyone else does, when they are not working a real job... These symptoms returning is such a reminder of how very damn sick I am. Having HELL return after getting a tiny little taste of being alive sucks. I really don't think I have cold Sherlock...but maybe I do and it is just not manifesting as it normally does - even tho I would think after taking chemo it would be a raging cold? In regard to the tests I am going back on Oct 9th for my next infusion and I am wondering if he will be running more tests then... i will ask! Appreciate your input...

 

[Jacque]

Jacque -- are you getting antivirals along with the Ritux? If not, could it be that some latent viruses are reactivating now that you don't have the B-cells? Isn't reactivating viruses a common problem with B-cell depletion therapy?

A thought -- maybe you had a honeymoon period where the depletion of B-cells reduced the autoimmune effect, but your infections hadn't become seriously active. Perhaps you are having a period (before your new, healthier B-cells are running around) during which the viruses are winning the battle. However, once your B-cells build up again they will win the battle (and the war) against the viruses.

Good luck and thanks for reporting how the Ritux is working.

Verrrry interesting...that could possibly very well be what is goin on.... makes perfect sense anyhow... Thx

 

[Jacque]

ah ok .. I guess that makes sense. I dont know about B Cells. How often do you have to get those infusions to keep them at bay?

Well that is the 650K question... it is all in research phase... i am having a total of 6 infusions and seeing how things go... after that. Just google "Norwegian study on Rituxan for ME/CFS" and you find all the info ... or I do believe the links are here on this site some place...