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Rituxan has helped me !

Rebecca2z

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
Well Happy Days, the Rituxan had made a big difference in my health. I had 4 rounds of RTX, the last round was on March 15th.
I woke up on April 30th and told my husband, wow I feel better today, Just like that I feel better ! I felt like I could go for a walk in the woods. Which I did and in fact I did a walk through the woods for the next 4 days and have continued to enjoy walking with my husband and dog everyday. I am enjoying being able to do things everyday, I am not wiped out from the day before. This is how a 60 year old should feel, this feels normal.

So it has been 2 and 1/2 weeks of feeling much better. My energy is much improved.
I am not bed ridden anymore, I am up and dressed everyday. I am shopping, hiking, cleaning etc. I am feeling all the things I felt from the steroids I wrote about in prior posts. I am able to do a couple of things in one day, I am tired after doing them but I find if I kick back for an hour I am ready to go again. The steroids did give me a much stronger feeling of renewed health but the way I feel now is very close.

I am able to eat without the excruciating pain and fullness. I am able to swallow. I still find I can only eat small amounts but I am not in pain after.

The RTX has had the biggest effect on my fatigue and over all strength. I can honestly say I am WAY BETTER, I don't have the heavy horrendous fatigue and my mental clarity is improved ( although this was better on the steroids) . Everyone around me is thrilled and in fact my nurses have asked if I am getting sol-u-medrol and decradron again. (The infusion center has called me their little miracle !)

It has only been 2 & 1/2 weeks of feeling better, I would expect to feel even more benefits in the coming weeks but if I don't this is ok, more than ok, IT IS GREAT. This is so much better, I feel like I want to do things again. We have planned a trip to the coast for 3 days, something I cloud not have done before.

We are checking my B & T cell levels and will use that as a guide for when I get more RTX.

I was so hoping I could report to you something positive and was worried the RTX wasn't going to do anything but it really has changed my life.

I worry this will wear off or won't work down the road but for now I am enjoying
life again. I am still on a feeding tube but hope to be able to cut that back to 5 days a week and maybe get off it for good.

I hope this can help others. I would for sure do RTX again, I am not perfect but I am so so much happier with living like this !
 
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geraldt52

Senior Member
Messages
602
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.
 
RUkiddingME

RUkiddingME

Senior Member
Messages
220
Location
Canada
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!!!:balloons::thumbsup:
 
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nandixon

nandixon

Senior Member
Messages
1,092
Rebecca2z said:
Well Happy Days, the Rituxan had made a big difference in my health. I had 4 rounds of RTX, the last round was on March 15th.
Click to expand...
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?)

Just to cross-reference some info, I believe we figured out on her other thread that she did each of the 4 weekly infusions at 375mg/m2, which for her was 580mg per dose. (See, e.g., this post.) In the Norwegian trials by comparison, I think they're doing, as the initial infusions, 2 biweekly infusions at 500mg/m2 (i.e., fewer doses of a larger amount).

And I'm not sure how important it is, but just for completeness, these are the amounts of steroids she had with each infusion in her post here.
 
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barbc56

Senior Member
Messages
3,657
@Rebecca2z

Your signature piqued my interest as I would love to move to CA.

Paradise, looks like a beautiful place.

Interested in helping to start communuty? We have a thread going about this but will have to do a search for it and I'm ready for bed. I'm half joking, half not!

Again, congratulations!

Barb
 
anciendaze

anciendaze

Senior Member
Messages
1,841
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.
 
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msf

Senior Member
Messages
3,650
Congrats!

Or its the old plasma cell theory. Either way, it's great that some people can get relief from Rituximab. I hope Fluge and Mella are also doing a long-term study of the effects of repeated doses of Rituximab on ME patients. Hopefully these are all positive, but such a study seems crucial in my view. If there are no significant long-term problems from using it, then those who are responders can be given maintenance infusions for the rest of their lives (if they can afford it) or until we know more about the causes of ME.
 
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barbc56

Senior Member
Messages
3,657
Since Rituximab is used for Cancer and some Rheumatology conditions I would think/ hope the side effects for long term use would be known.

As far as our population, I wonder what the longest time period for ME/CFS patients getting Rituximab has been?

It would be interesting to find out.

Barb
 
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