Hi all,
Ive been on this forum since being diagnosed in 2015 with ET. No meds as yet but aged 64 and platelets 800+, I know it’s only a matter of time…
But my question is about inflammation, does it cause acid reflux and is it common amongst us MPN peeps? I’m really struggling at the moment and PPIs don’t help at all. I’m doing all the self help stuff with diet, raised bed etc but not having much success.
I’d really appreciate any input/advice…
Thanks so much ☺️
Sorry you are suffering from this, I’ve not heard of ET inflammation causing acid reflux. Have you checked your inflammation marker CRP to see if you do have high levels of inflammation?
Have you tried probiotics?
Best Paul
Hi Paul thanks very much for your reply. I’ve just ordered some probiotics and digestive enzymes.
Can I ask what a CRP is..? Sorry for my ignorance! 😄 And I wasn’t aware I would have an inflammation marker. Every day is a school day with MPNs..
Best,
Jayne
You have indicated you're not on medication. Does that include aspirin?
Hi Phantasia, thanks for your reply. I was on aspirin for the first few years but couldn’t tolerate it. Now I just take curcumin.
Best
Jayne
I wondered because aspirin particularly if it's not enteric coated can cause stomach and reflux issues. I have mild gastritis and reflux but it doesn't bother me much. I assume it's from 10yrs of taking aspirin even though I use the coated type.
My sister has been taking Betaine HCL for her reflux and it seems to work for her. Something to discuss with your doctor perhaps.
Yes I did have the same problem for a long time before diagnosis. The various tests I had on the way to ET diagnosis showed I have a hiatus hernia. Medication has stopped all the symptoms. I vaguely think I remember a similar question here that had quite a few of us with these issues.
Thanks Conneryfan and it’s good to hear you’re free of reflux!
Pre-diagnosis, I had *awful* acid reflux, I had frequent cluster headaches, and I waking up with milder headaches several times a night. With Hydroxy (500 mg daily), for the most part, all of that has gone away.
I *can* trigger mild acid reflux still by eating something I probably shouldn’t (something with too much fat and sugar usually), but one Tums and a glass of water takes care of it now. (I believe drinking so much water as recommended with the Hydroxy (64 oz daily) has helped, too.)
Gail
Hi JaynieQ,
I am 63 yr old with ET JAK2+ and had a recent Dr. visit who is an MPN specialist and we had a convo about inflammation and MPN’s. Yes, it is a question of whether the inflammation came first or the MPN but we are inflamed! She suggested to follow a Mediterranean diet to keep inflammation in check. As to whether acid reflux is from inflammation I would think so because it is when our bodies are too acidic is when we are inflamed:/ Don’t know if this helps but I hope you feel better soon
I see you're taking Curcumin. There is another supplement that has potential for reducing inflammation, NAC, since you mention supplements and inflammation.
"N-Acetylcysteine (N-AC) is FDA approved to treat acetaminophen overdoses and has been shown to have anti-inflammatory and anti-thrombotic effects"
cureswithinreach.org/2020/1...
It's in an early trial for MPNs as seen here. Some of us are taking it and I feel it helps my condition. But I don't have acid reflux and I've not seen it specifically directed to that indication.
Hi JainieQ, I am on a parallel track to you but over in Oregon. I have had high platelets all my adult life which I just monitored every year. This year they went over 900 and set off other blood counts. I just had a referral video appointment with a Mayo Clinic doctor because I was afraid my local cancer clinic did not have the scope or experience. He said my ET is heading toward PV and I really must either start HU or Interferon treatment to avoid heart /clotting problems. Even though I'm relatively symptom free at this time (one day short of age 65) and have a clear heart history, good cholesterol, etc. , it looks like I've run out of stalling time and will start one or the other in the new year. The Mayo doctor says Interferon, tho having side effects of its own, has several advantages even as a first approach to MPNs: it actually can bat back the behavior of the JAK2 mutation, and seems to prevent or greatly slow down MF, which of course is more dangerous. Here in the US it will likely cost me several thousand dollars each year, which is intimidating, as are the side effect list, but of course HU has its own list and toxicity too boot.
I have had increasing GERD symptoms for the past decade, to the point where I sometimes take prescription PPI drugs for it if I know I'll have a rich meal , coffee, etc. The timing seems to be important to get results. Refraining from wine and acidic foods helps. In general it is a big drag but we know how unpleasant living with a burning esophagus is.
May holiday foods treat you well!
Stopped peg injections after 4 years due to side effects and several symptoms came on including a bad case of gerd. Was on daily, famotidine mostly with Gaviscon extra strength tablets, occasional ppi’s, sleeping on raised bed for 2 years. 3 months ago, after testing positive for SIBO I did an elimination diet and found milk, whole grains and milk chocolate were biggest culprits so I cut them out. Not sure if it’s related but 2 months ago I also got Covid and after a course of paxlovid haven’t taken any reflux meds since. I still make sure to sit upright for 4 hours after dinner before lying down in bed.
ET
ET
Is it et?
Tet2 and inflammation
