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

[satoshikasumi]

I have had three rituximab infusions, beginning in May 2012. I have also taken Valcyte beginning June 2012. Beginning September, I started working full time for the first time in my life (I was a teenager when my ME/CFS symptoms began) and have been able to handle 40-45 hours per week, with limited energy to spare for leisure activities. However, I am not symptom free.

Five months is about the average time it takes to see improvement with rituximab.

 

[Snow Leopard]

I have had three rituximab infusions, beginning in May 2012. I have also taken Valcyte beginning June 2012. Beginning September, I started working full time for the first time in my life (I was a teenager when my ME/CFS symptoms began) and have been able to handle 40-45 hours per week, with limited energy to spare for leisure activities. However, I am not symptom free.

Yes, the magic seems to hit a peak at around 25 weeks after the first infusion. Working full time is impressive (to us anyway), well done for getting back in the swing of things. Have you found your cognitive abilities have been restored (or less headaches etc)?

 

[alex3619]

I have had three rituximab infusions, beginning in May 2012. I have also taken Valcyte beginning June 2012. Beginning September, I started working full time for the first time in my life (I was a teenager when my ME/CFS symptoms began) and have been able to handle 40-45 hours per week, with limited energy to spare for leisure activities. However, I am not symptom free.

Five months is about the average time it takes to see improvement with rituximab.

Wow, just wow. I am really happy you are responding like this satoshikasumi! Bye, Alex

 

[August59]

I haven't been able to read every thread, so I hope I am not repeating something already discussed. If I am please point me to the original one if possible.

With these trials with Dr. Kogelnik, what are his plans post Rituximab infusion. Are they any plans to follow up with anything since the relapse rate on the initial study was pretty high? If so, what does he plan on anti-virals or treat any arising symptoms? Just curious.

Thanks

 

[IreneF]

I have had four infusions, have passed the six-month point, and have not seen any improvement. My next infusion isn't scheduled until December. I am going to ask Dr. K to add Valcyte or something similar.

I took Valcyte for nine months a few years ago and had some slight cognitive improvement, but that was it; perhaps the combination will work.

On the other hand, I haven't had any problems due to rituximab.

 

[dsdmom]

Irene, I thought you did have some improvement for a few weeks at some point?
Did you really not have any side effects from the Rituxan? How wonderful!!
I hope you start feeling better soon.

 

[IreneF]

Irene, I thought you did have some improvement for a few weeks at some point?
Did you really not have any side effects from the Rituxan? How wonderful!!
I hope you start feeling better soon.

I did feel better for a little while but it didn't last.

 

[sandgroper]

Now how would the killing off of B cells tie in to reversing intolerance to alcohol? I don't know, but I'll mention that pain in lymph nodes after drinking alcohol can be a sign of Hodgkin's Lymphoma, which is a cancer of B cells. No one knows why alcohol causes that effect.

my mum had non hodgkins lymphoma and was alcohol intolerant from before she got it....she had mabthera during some of her relapses...she certainly was more functional than me...maybe the mabthera helped other things for her too.

 

[Jacque]

Hello... sorry I have not been keeping up with my weekly posts.. I tend to say nothing when things are not going well. Tumbled all the way to the bottom of he mountain again. Maybe a little more vertical than I was when I started but feeling like absolute DOO. My pain level has increased - not decreased - my pain med intake has gone up not down.... I did have a two week bounce after my last infusion where flu symptoms and fatigue decreased quite a bit - but PAIN has always been a CONSTANT!!

Had my 3rd infusion yesterday. Went ok... had a bout of severe nausea this time. So now, as usual, I wait and wonder!! Really starting to lose my patience.................................................................

Dr. Kogelnik says the average response with Rituxan is around 22 weeks... and I am only at 13 weeks (i think)... my brain is also REALLY bad especially when it comes to numbers...

I told Dr. K that my entire body feels "bruised" to the touch...most areas when pressed on feel like you are pressing on a BRUISE... Do all you have that? I also have VERY tender bones when pressed on... I just feel like a like a living, breathing vessel of PAIN...aching burning pain... The slightest bit of exercise makes my musles so sore and stiff....

I showed him a book on CFS/FM titled BETRAYAL OF THE BRAIN-Dr. Goldstein MD... that describes a theory of the Limbic system of the brain becomes damaged with an infection of some sort.. Lyme?EBV? HHV6? Then gets stuck in a cycle of sending out pain signals. Dr. K had not seen it and seemed somewhat interested.

Have any of u read the book?

If I don't improve on the Rituxan......I am going to explore the BRAIN/PAIN connection... I just want a life ... is that too much to ask??

Sorry I don't have more positive things to report!!!

 

[maryb]

Jacque sorry to hear things are not so good - the pain thing sounds awful - hope you manage to get through this rough time and start to improve soon.
Just wanted to say I cannot stand anything more than a light touch on my skin anywhere, showers hurt, and if anyone pushes me, (just in jest) its sore. Having an MRI scan I couldn't tolerate the pressure from the head constraint, they had to take it off. Its a symptom I've had since having this illness.

 

[Little Bluestem]

Jacque, I too am sorry to hear that you are having such awful pain. I am glad that you reported in though. We want to hear how things are going with you, good or bad. Most of us have few positive things to report most of the time.

 

[Jacque]

Jacque sorry to hear things are not so good - the pain thing sounds awful - hope you manage to get through this rough time and start to improve soon.
Just wanted to say I cannot stand anything more than a light touch on my skin anywhere, showers hurt, and if anyone pushes me, (just in jest) its sore. Having an MRI scan I couldn't tolerate the pressure from the head constraint, they had to take it off. Its a symptom I've had since having this illness.

Well I wish you were not dealing with the horrific pain as well... I think I could handle this illness quite well if I didn't have this relentless head to toe pain... It is enuf to make one mental isn't it? My skin hurts also but not as bad as yours I don't think. Mine is mainly muscle, joint, and nerve.. So I guess those without the severe pain issues have CFS and not ME...is all I can figure... And after reading Betrayal by the Brain...I have to wonder how much of that theory is correct... It is all so crazy...if I didn't have my kids/grandkids I am not sure how much longer I would stick around for this insanity...

 

[Jacque]

Jacque sorry to hear things are not so good - the pain thing sounds awful - hope you manage to get through this rough time and start to improve soon.
Just wanted to say I cannot stand anything more than a light touch on my skin anywhere, showers hurt, and if anyone pushes me, (just in jest) its sore. Having an MRI scan I couldn't tolerate the pressure from the head constraint, they had to take it off. Its a symptom I've had since having this illness.

You sound like one big bruise too... when you press all around on your face is it really tender on your cheeks, jaw, eyelids??

 

[roxie60]

I am happy for you that you had so many good days in a row. I appreciate you sharing what good days look like for you. Helps to bring perspective, good days vs bad, gives me a comparison and way to set expectations. Your words describe much of what I. probably many here, experience. It is a mad mad mad illness. Best of luck on next infusion, please keep us updated!

 

[Jacque]

I am happy for you that you had so many good days in a row. I appreciate you sharing what good days look like for you. Helps to bring perspective, good days vs bad, gives me a comparison and way to set expectations. Your words describe much of what I. probably many here, experience. It is a mad mad mad illness. Best of luck on next infusion, please keep us updated!

You know when I think about it... were they really "good" days??? On those days I did normal things like mop the floors or clean out my car and cook dinner and get dressed in the same day... It was brief and I still hobbled everywhere in pain and suffered for the increased activity with increased pain in my muscles from using them... How very pathetic that I refer to those days as better days...now looking back. If people who judge us only knew what we live with day in and day out... it IS a MAD illness you are so right.. Love your saying about the towel!

 

[maryb]

You sound like one big bruise too... when you press all around on your face is it really tender on your cheeks, jaw, eyelids??

Yes it is I can't put presure anywhere - think I need to ask the psychs which bit of PACE and GET will help
Here's hoping your good days return soon - our pioneer

 

[Seven7]

Maryb, Dr Rey told me they use LDN for CFS pain, have u tried that? I saw it as supplement sold by Dr Elander on his website.

I don't think Pain has to do ME Vs CFS (PEM is what differentiate them). I used to have little Pain and I am ME (by ICC i think the new international one).

 

[merylg]

You sound like one big bruise too... when you press all around on your face is it really tender on your cheeks, jaw, eyelids??

Hi Jacque, I had that severe cheekbone tenderness, along with severe flushing to face, red patchy rash all over arms & legs, plus swelling of joint at base of thumb as a reaction to Plaquenil. I thought it some kind of allergic response but now I am not so sure what it was. No-one could explain to me the reason for it. I think I may have an inherited connective tissue disorder ?Marfan's & maybe mast cell disorder.

 

[maryb]

I have to say when I am feeling better the skin pain disappears and I once again enjoy showering with massage jets, these periods tend to not last sadly. Inester7 - LDN is one of the things I kep meaning to try, but having heard some tales about it sending people backwards its made me cautious. I function at a level where I am able to do a little, go out etc for short periods, plenty of resting inbetween, no stress and rarely social functions. Massive PEM if I overdo it.
I really can't risk becoming housebound again that really was the worst time, but if I don't try it I'll never know, what to do??

 

[Sushi]

I have to say when I am feeling better the skin pain disappears and I once again enjoy showering with massage jets, these periods tend to not last sadly. Inester7 - LDN is one of the things I kep meaning to try, but having heard some tales about it sending people backwards its made me cautious. I function at a level where I am able to do a little, go out etc for short periods, plenty of resting inbetween, no stress and rarely social functions. Massive PEM if I overdo it.
I really can't risk becoming housebound again that really was the worst time, but if I don't try it I'll never know, what to do??

Hi Mary,

I understand your concerns about trying LDN. I am one of those who take it successfully and I keep up with people's LDN stories. I think most people who have a bad reaction start with a bigger dose than they can handle. Docs just don't realize how sensitive we are! Even though the usual protocol for Fibro and ME is to start with 1.5 mg, that is way to big a dose for many.

I'd say you could greatly reduce the likelihood of a bad reaction if you start with a REALLY low dose--like .25 mgs or less. Though Dr. Enlander has it on his supplement order form, it is a prescription medication and I don't think you could order it from him without having a prescription.

LDN begins to have an effect really fast (like the day after you take it) so you can get an idea of how you would respond with just a few doses.

Best,
Sushi