Jplsuper

[Jplsuper]

Hi I'm Jplsuper and I have been fighting MPN since 1988. The best I have felt has been taking Jakafi. All other meds caused fever, bone pain, and fatigue. It is interesting to finally meet and see people talking about our disease. I've waited a long time.

[Stevesmum42]

Welcome jplsuper. This is a wonderful site where you will get support and advice from people who have been living with an MPN . Who are knowledgeable and practical with advice for you .

Best wishes Sandy

[Jerrymohler]

You look "supe" in the pic! This site is an unbelievable blessing. How else could we ever find each other?!

[Jplsuper in reply to Jerrymohler]

@jerrymohler Thanks, I needed that!! Glad to find you😀

[tuffetgal]

hi jplsuper a picture of a longhorn maybe??

i was recently diagnosed with pv but cant seem

to get a phlebotomy or the new drug jakafi. which mpn do you have? i also am very

sensitive to other meds. perhaps a phlebotomy would be the first step?

i am retired and single, so i am independent and want to stay that way !!

any advice from someone with your longevity would be great! :+)

[Jplsuper in reply to tuffetgal]

@pvnow3. Yes I have had PV since 1988 and now have MF for the last Six Years. I first took Hydroxarea for about 10 years with various side effects. Then interferon about 6 years. Never felt well on interferon. Felt like I had the flu. Anyway after acquiring MF I was able to get on Jakafi and now I have my life back. It is a miracle drug for me. I've had some ups and downs but I'm still going strong. Find a knowledgeable Doctor and most important stay positive!!

[Marie_14]

Well done! You look great and long may it continue to be so. My husband is on Jakavi too and has had an excellent reaction. The only problem is he has now got a rare form of Parkinson's. No cure and it's very progressive. Life is cruel at times?

Marie

[Jplsuper in reply to Marie_14]

@Marie-14 yes life is cruel sometimes. But I believe God has a plan. Keep the faith!! Stay positive. Your husband needs you. Best of luck to you and your husband