Raynaud's disease and Gazyva and Raynaud's remission

[craterlake]

Hello everyone .. my wife and i had a peaceful thanksgiving at home . at our old age we really miss spending time with our loved ones during the holidays ,,, because of my gazyva infusions i am being extra careful . the Lord provided a beautiful fall day making us feel better ... plus my wife is an excellent cook .....--- i particularly feel sorry for my wife who isolates with me a lot so as not to expose me to any viruses she might catch.. we have been together for almost 56 years ... 😊 ...... HERE is my Question : do any of you have Raynaud's disease ??? i have had it for over 40 years . i dread the winters . when my fingers turn white when they get cold --- it is extremely painful to warm them up ... this is almost a daily occurrence .in the winter.. NOW the GOOD news .. i have been having gazyva infusions since early oct. and i no longer have raynaud's disease ... it has been below freezing a number of times and i have been outside working at night in the freezing weather and my hands do get cold but no Raynaud's .. it is so wonderful i can hardly believe it after all these years ,, What do you suppose has caused this amazing healing experience... blessings to you all .. james

[Big_Dee]

Hello craterlake

Yes, the weather has been great the last few days. it is also nice to get some side benefits to CLL treatment. My psoriatic arthritis gone after having Rituximab in B+R treatment. Time to celebrate!

[craterlake in reply to Big_Dee]

Hi Big_Dee , yes - what a blessing to have a positive experience out of all this .. how long has it been since you stopped having the rituximab ???

[Big_Dee in reply to craterlake]

Hello craterlake

Three and a half years since I finished rituximab. I noticed that my psoriatic arthritis had disappeared about 6 months ago. Doctors were not surprised as rituximab is used to treat arthritis. Blessings.

[Floxxy]

I've had Raynauds for about 12 years now. I take Nifedipine which helps to some degree but I still get blisters on my fingers and my nails fall out. The only time I was free of Raynauds was when I was on Rituximab as part of my chemo. It was amazing. I also use heated gloves outside and fingerless gloves in the house. It has been warm here in the UK at the moment so hands have benefited.I hope that you remain well and Reynaulds free. X

[craterlake in reply to Floxxy]

Hi Floxxy , so sorry to here the seriousness of your raynauds ... how long after you stopped the rituximab did your raynauds return .. ??? .... james

[Floxxy in reply to craterlake]

I started Rituximab at the beginning of 2019 for 6 months. No problem at all with Raynauds that year but it returned the following year. X

[craterlake in reply to Floxxy]

O.K. i will be expecting it to come back sooner or later ... thanks for responding . how is your CLL ???

[Floxxy in reply to craterlake]

I feel fine at the moment but have found a lunp in my neck which is being investigated. Keep well. x

[craterlake in reply to Floxxy]

I am glad to hear you feel fine in spite of the lump. i hope it is not related to your CLL . keep us posted .. 🙏

[Floxxy in reply to craterlake]

Thank you. X

[rslagle]

just an FYI,,, I have found that if I put on a pair of latex gloves and then my winter gloves I can be outdoors in winter weather for quite some time and my fingers do not get cold !

[craterlake in reply to rslagle]

Hi Rslagle , thanks for the info .after reading some posts and links it is a good probability that my raynauds will come back after the Gazyva wears off ... i hope not this winter ..

[GumboKing]

My 1st treatment was Gazyva (and Chlorambucil) beginning in Dec of 2014. I have had crohn's disease for over 60 years. But when I started Gazyva my loose BM problem suddenly became constipation. And I have spent years sense dealing with that. Of course the intestinal scar tissue from Crohn's remains and is still a problem, But other problems related to active Croh's disease are still absent. I think I have recently solved the constipation problem with probiotics. No more stool softeners or suppositories for the last several months.

[craterlake in reply to GumboKing]

Hi GumboKing , thats great that you got relief from crohns ...and learned about the antibiotics .. 35 years ago i had know clue what probiotics were ... our son had really bad acne when he was a teenager and he was prescribed antibiotics to help it .large bottles of the stuff .6 weeks at a time .. it kept the zits from getting infected but made the acne worse ,, we were on our way back home from a missionary trip to mexico and stopped in at a health food store in washington . only the second time i had ever been in one . on the counter was an ad for probiotics and info of why most people need them . we spoke to the owner and told him about our son who was with us ... he said that he had heard about others who had suffered with taking antibiotics for acne . we bought some probiotics for our son and with in a month his face and back were clearing up . by the end of summer the acne was totally gone .. our family has been taking them ever since .

[DawnRedwood]

WOW! I have Raynaud's Syndrome...........not the disease itself so it's not nearly as bad, but whatever cured you of Raynauds............CONGRATULATIONS!!! Be glad it's finally GONE! It's now safe to go out in the cold again. Take care!

[craterlake in reply to DawnRedwood]

Thanks DawnRedwood ,, it is like a miracle ... i am going in for another Gazyva infusion on wednesday ..for my CLL but . i am going to be smiling this time even though the snow is coming later this week ...😊 .. blessings , james

[bennevisplace]

I'm not sure if CD20 monoclonal antibodies (Gazyva, Rituxan) are approved treatments for Raynaud's. Your experience is in line with this case study from 2016 raynaudsnews.com/2016/10/06... and ncbi.nlm.nih.gov/pmc/articl... with impressive before and after photos! Years later the patient relapsed and was successfully re-treated with Rituxan kenhub.com/en/library/anato...

[craterlake in reply to bennevisplace]

Hi bennevisplace , thanks for the links . They are very good articles with photos etc. and the follow up info on a real case history ---- i have been wondering why the doctors had not been treating raynauds with rituximab/Gazyva before now .. it seems like the people i have spoken to over the years just advise me to wear warmer close and heavy gloves . i can have an attack by being in an airconditioned supermatket and get food items out of the freezer ...... i am going to discuss future treatments with Gazyva with my oncologist on wednesday ..hope you are doing well ... blessings , james

[bennevisplace]

I'm doing well James, thanks, apart from persistent migraine which I can't attribute to CLL. I was on Rituxan for 6 months as part of my treatment with the usual cytopenias that follow, slow to recover. I hope my ALC stays stuck below 1(000) for a few years longer, which would be a good indication I won't need a second line treatment. Fingers crossed.

If you were not having Gazyva for your CLL I doubt you would find a doctor willing to prescribe such an expensive drug for Raynaud's, at the dose you're getting anyway. Perhaps the drug companies have already trialled lower dose G or R for this type of condition? I believe R is used to treat some autoimmune diseases.

[craterlake in reply to bennevisplace]

Hi bennevisplace , thanks for mentioning cytopenias , i did not know the meaning of that word ... after reading a very good article ,including several case studies . i learned that cytopenia is exactly what i have .. i go for another lab. - gazyva infusion -onc. visit wednesday and i am looking forward to seeing the level of improvement i have made after a couple months of Gazyva ... yes i had not thought about the cost of the Gazyva for raynauds , most of the time it is a painful annoyance and not life threatening like leukemia .. so very little money will be approved for that condition . hope you continue on the road to recovery .. blessings , james