LDN ?

[DH65]

Is anyone taking or looked into LDN ( low dose naltrexone) ? It helps with Cancers and inflammation as well as auto-immune. My hemeatologist said it might help bring platelets down. I’ve been trying for a few months , so far I have more energy and less side effects from HU. Platelets still higher than he would like. It’s allowed me to come off Ativan as its calming and helps me sleep.

[Lab-Rat]

Hi, did your haem prescribe the LDN? Are you in the UK? I am interested in LDN but it is not prescribed in South Africa. I have ET Jak+ with low Von Willebrand Factor.

[DH65 in reply to Lab-Rat]

Hi, I’m in USA and no heme didn’t prescribe it but said he has other cancer patients on it and is not against it. Said it could help side effects which it has. There are several Facebook groups for LDN and someone there may know how you can get it.

[Christyjo1965]

Awesome are you in cali? I want to try LDN but my hematologist said he has never heard of this? I even took the literature he wouldn't read it! I feel lost I really want to try this! Can you please tell me how it works my hemo just tripled my HU and changed my diagnosis to PV! I was only just st diagnosed 3 weeks ago and I'm already running the gamer!

[DH65 in reply to Christyjo1965]

Hi, yes in CA Northbay where all fires are! In the beginning it seemed to lower platelets while lessening side effects of HU so good news but last two months platelets up so I’m not sure if it’s because I tried increasing Ldn. It takes a lot of trying doses to see what works as we are all different. It works Very well on tumor cancers. There are Facebook Ldn groups and lists of doctors who can prescribe.

[momoza]

It's been 3 years since you wrote this post. Has the LDN treatment benefit your health in case of longterm managment of your disease? My mother has beeen diagnosed with prefibrotic stage of myelofibrosis and we're planning on starting the LDN treatment. There is no information on LDN's effect on treating or simply daily managing of MPNs. Maybe you can give us some insight into this topic.

[DH65 in reply to momoza]

Hi, I am still taking LDN but it doesn’t seem to help with my elevated platelets. I remain on it as I feel better in general, much less fatigue, stronger. Don’t be afraid to try it at a low dose to begin.