Connect
Is anyone with PV/JAK2 taking GLP or GIP
I was diagnosed with PV about 6 years ago. Positive for JAK2. I started HU and take 1000mg daily and low dose aspirin with usual complaints of fatigue etc. When my hematocrit reaches 42 I know it without a blood test because my legs begin to hurt and I become even more tired. I was also diagnosed with gout when PV first diagnosed. I’ve been taking thyroid med for hypothyroidism for over 30 years. I’ve also had stomach issues since I was a kid. When I’m stressed that’s the first thing that I notice and although never diagnosed, may be IBS.
I’ve always (as far as I can remember) had weight problem. I love good food and I love to cook (although at 78 Im not as enthusiastic about cooking as I once was). In my 30’s I lost over 100 lbs but gained it back and more and I am still trying to lose it but it is a daily struggle because if I even look at a slice of toast I gain weight.
I loathe exercise (my idea of the PERFECT exercise is sitting in a comfy chair and reading a good book)! But, because I have a very bad back I do use a recumbent elliptical and do stretching exercises taught to me by PT at Mayo.
With all the talk and press about these new weight loss drugs that have finally, IMO, addressed the true cause of chronic weight problems I asked my hematologist about them. She told me there was some research on it and she had no objection to me trying it and my GP says the same. I’m supposed to start taking the pill form.
Is anyone with same issues of PV/JAK2 on any of this drugs and how’s it going for you? Stomach issues?
Sorry this is so long and Thsnks for any input you can give me.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
My daughter has ET/Jak 2. She is allergic to interferon medications. We are headed to Rochester Mayo clinic in September( first date). She is on a GLP. It has helped a her uncomfortable bloating and her oncologist has said it helps with disease inflammation. The weight loss has been slow bc of the disease and other gut complications she has. She has lost about 25-30 pounds since starting in November. Most poor lose faster however she can’t eat much or exercise so it is a slower process. Hope this info is helpful and would love to hear from others and their experiences
-
Like -
Helpful -
Hug
3 ReactionsHello! Thanks so much for sharing this info. I so want to try this because IMO, science has finally realized and determined that weight gain in some of us is not a lack of self control. I’ve fought with my weight for over 65 years and been through all sorts of diets and programs that work and then don't.
I think this will work if my gut can take the reported usual side effects.
I would be delighted to lose 25-30 lbs in 7 months!
Your daughter is lucky to have you as her advocate. I hope that Mayo helps her and you through this journey. Christina