[brandywine]

Re: Ninlaro side effects?

by brandywine on Sun Apr 16, 2017 3:07 pm

I have the same eye side effects as you, plus I now have cataracts. My eye doctor will do a re-evaluation in June. My eyes stay red like I am allergic to Ninlaro. He said blurred vision is caused by the cataracts.

[julian]

Re: Ninlaro side effects?

by julian on Wed May 31, 2017 3:11 pm

Ninlaro has some eye complications, such as blurriness, tearing and redness. It's not listed in the drug insert. I researched it since I was having some muscular aches and pains, also not listed, and thought it was from the transplant (almost one year out). I have been on Ninlaro now as main­tenance for about three months and the only thing other than the muscle aches is a slight increase in my peripheral neuropathy.

Good luck.
Julian

[Lisa Stephenson]

Re: Ninlaro side effects?

by Lisa Stephenson on Mon Jun 19, 2017 1:04 pm

I'm into my first month of maintenance Ninlaro and Revlimid. I can't tolerate dexa­metha­sone, so the regimen is only with the Ninlaro and Revlimid. Is it unusual just to be on these two (without the dexamethasone)?

I am experiencing quite a bit more fatigue and joint aches. Is this a typical Ninlaro side effect?

Thanks for any feedback!

[John Persons]

Re: Ninlaro side effects?

by John Persons on Tue Sep 12, 2017 10:32 am

Hello,

I would just like to say, great forum, keep it up on the Ninlaro info.

I am age 51, fighting myeloma for 10 years, sometimes Velcade-dex regimen, but mostly Revlimid-dex regimen. I have not had a transplant.

I am starting my 5th cycle of a new regimen, Ninlaro-Revlimid-dex. What I have noticed compared to the old Revlimid-dex regimen is more diarrhea, much more fatigue, and also a tendency to easily contract colds. So far I am able to tolerate it, and the initial Ninlaro round definitely knocked my IgG counts way down. After 1 round I went from 4599 mg/dl to 1687. The next rounds have not been knocking the myeloma down as much as I'd like, but my plan is to do 6 cycles and see where we end up.

Good luck to everyone.
JP