Hi - I am new to the group and have had ET for 18 years. I have been lucky to be able to have 2 healthy children while being treated on pegulated interferon for 9 years but have since developed odd symptoms which they do not know whether is related to the drug or not?!! I have been in and out of GP/Hospital for the last year and still no answer and currently being treated on Hydroxcarbimide while waiting to see an immunologist. I wondered if any of you got the following symptoms either from your condition or medication as been struggling with bad taste in mouth and mouth being sore, very dry mouth and burning in my nose, on and off sore throat. This never goes away fully but gets suddenly worse to the point a couple of times I have ended up in hospital as felt like I could hardly breath and throat closing up. I have seen an ENT and have a follow up on Friday (if I can attend after updated COVID guidance). He has checked me sinus via ct scan and scope going up into my nose and down back of throat and said no issues - they have done tests for B12/Vit D etc which come back fine - I do have B12 injection and also take Vit D spray as have had issues in the past. If any of you have had similar symptoms would love to hear from you - also what are you all doing in regards to self isolation? I have emailed my consultant to see if I will be one of these people getting a NHS letter to self isolate as I do have to take the flu jab every year and seen blood and bone marrow cancers on the main list of vunerable patients. Thank you Becky
New Patient with ET for 18 years but developed s... - MPN Voice
New Patient with ET for 18 years but developed some odd symptoms!
Interesting. I have just been diagnosed and on no meds yet and have dry sore mouth and a metallic taste as well. Seeing the doc today so will ask him about that. Let you know if I get any answers.
That would be great to know what they think! thank you so much! Also been put on PPIs for acid reflux but they haven't made an impact at all even though the taste sometimes feels a bit like indigestion - taken a load of things out of my diet too … its all very strange! thank you
Heart burn is horrible! Night time especially. Never considered might be related to ET. Another question to add to my ever growing list.
ive had a load of tests endoscopy and the other way and a CT scan and found nothing swollen or anything so I am baffled if it is indigestion - waiting for immunology referral but I doubt will get this at all now until a lot later this year! Definitely ask about it and let me know what they think the dry mouth and taste is
take care
Right now he said none of my symptoms are blood related because I’m not on meds yet. He’s sending me for a bone marrow biopsy and a brain MRI to make sure no clot is forming. 😣
Did they have any suggestions what could be causing it? Hope the biopsy and MRI go well - when are you going for that?
Hi. Thanks for posting. This is a recent thing I have been experiencing too. It's not bad but my tongue kinda feels like it is burnt and I have a metallic taste towards back of my tongue and throat. I sometimes lose my voice a bit. I am not back to the haematologist til June. It's just weird. Look forward to hearing more. I have been on HU for about a year.
It sounds very similar to what I have but been getting progressively worse with sores on tongue at times and then really bad taste it so strange! I have been looking at Sjorgens Syndrome as also went to get contact lenses check yesterday and my eyes are dry - wonder if pegulated interferon has caused some sort of other auto immune disorder? I have been off pegulated interferon for 6 months now and no improvements but one of main side effects fo that is dry mouth? I am seeing ENT again on Friday so was going to mention. thank you
Too little information to know, but a few considerations. HU can cause stomatitis / mucositis. So - irritation of mucosae is possibly related to the HU. Like many meds, the is a risk of anaphylaxis with HU, but that does not sound like what you are experiencing.
Have you been checked for GERD? I do experience this myself. it lead to a hiatal hernia and esophagitis. Reflux can also leave a really bad taste in your mouth. I believe that the GERD is just one of several systemic inflammation issues I experience related to the JAK2 mutation. Some docs agree - others are dubious. regardless - I treat the GERD with Nexium and the occasional "GI Cocktail" when it is really bad. I am attempting to lower the systemic inflammation with some complimentary health approaches (Turmeric-curcumin, SPM Active, L-Glutathione). We will see how that goes.
Hope you get some answers soon.
Thank you for your response - I am nexium at the moment but found little difference to be honest - can I ask what your GI cocktail is and do you get irritation in your nose as well as mouth when your GERD is bad?
I do have a hiatus hernia after tests were carried out due to medication but was told no ulcers/inflammation which confuses me even more! Really interested in your other approach too - where did you hear about this and what does it do to help?
Thank you
GI Cocktail = Maalox + lidocaine. Have been given it in urgent care/ER when heartburn really bad. I will slowly swallow just the Maalox when I have a reflux incident where my throat feels raw. The Nexium works well for me so that does not happen too often.
The hiatal hernia is permanent damage to the valve at the top of stomach/bottom of esophagus. it is caused by years of reflux. The valve no longer closes all the way allowing acidic stomach contents to go back up the esophagus, particularly when you are laying down. Ulcers or irritation can come and go. Gastritis (in the stomach) and esophagitis (in the throat) are common symptoms that vary over time. It is very important to treat as this chronic irritation can predispose you to cancers (Barrett's esophagitis, esophageal cancer, etc.). If Nexium is not working well there are other proton pump inhibitors that may work better for you. I do believe that systemic inflammation makes GERD worse.
The approach I am using for systemic inflammation started with my rheumatologist. She suggested I try Turmeric to help with the osteoarthritis. I found a Turmeric-Curcumin blend that worked great (Spring Valley Turmeric-Curcumin w/ Curcuwin 550mg - take 3 caps/day). The Curcuwin blend worked better than any NSAID I ever tried. I have not needed nor taken any NSAIDs for the arthritis or plantars fasciitis since I started the Curcuwin formula. Do be aware that turmeric supplements are not readily bioavailable, so the formula you use matters. I decided to add an Integrative Medicine specialist to my treatment team when I realized that most of my docs had little/no awareness of the impact of complimentary health approaches. I believe that anything that is biologically active enough to help you can also hurt you. Supplements can and do interact with the medications we take. I wanted to pursue some alternative approaches to the systemic inflammation I experience due to the JAK2 mutation, while staying mindful of potential adverse effects. I am hoping for relief from various inflammation related conditions: osteoarthritis, plantars fasciitis, GERD, insomnia, eczema, etc. Time will tell whether what I am trying will provide additional relief. We are looking for some objective markers for success. The doc did labs for C-reactive protein (normal) and TF Growth factor beta (elevated). We are looking into labs for other inflammatory cytokines (TNF, Interleukins, etc.) This is not in common clinical practice, but these factors are currently in research.
What I am trying is not typical treatment. I am trying to take a scientific approach to this. I always look for objective evidence to support anything I decide to use. I am hoping to find some objective measures to support what I am trying, but may have to just go with subjective symptom relief.
Hope that helps. All the best to you.
That is really interesting thank you! I get a lot of joint pain on and off and seem a bit predisposed to it but never thought it would be related to Jak 2 gene and no one mentioned it could be? I also suffer from anxiety so think that has a part to play both in reflux and joint pain as I am so tense sometimes. I am definitely going to ask my specialist about Tumeric. Thank you for your advice.
The role of the JAK 2 mutation in producing an excess of inflammatory cytokines is an area of emerging research. It offers some real hope for treatment options for people with the JAK2 mutation. Here is a nice primer presentation on this topic.
youtube.com/watch?v=FzyoPAG...
My own professional background in behavioral health lead me to a solid reliance on evidence-based practices. I believe in applying this to all of my treatment and make no decisions with understanding the underlying evidence that supports the treatment option. This applies both to conventional medicine and complimentary health approaches.
Regarding the GERD and anxiety, there is a known link there. The "Gut Brain" is a concept that is very important to address. GI inflammation produces a variety of body chemicals including cytokines, cortisol, and catecholamines. These chemicals travel to the brain and can induce anxiety, depression and insomnia. Additionally, nerve impulses are conducted to and from the GI tract and brain via the vagus nerve. These nerve impulses can also induce anxiety, depression and insomnia. Both the biochemical and nerve signals work both ways. Anxiety can trigger GI problems. GI problems can trigger anxiety.
The body is an integrated system. While some things occur in isolation, often we find links between things that are not readily apparent. I am quite certain that systemic inflammation is a real issue for those of us with MPNs and something worth understanding better.
All the best to you.
Thank you so much for sending this! When I have a really bad attack with acid reflux I then get a panic attack or vica versa. This is really interesting to hear as I always thought it must be medication related. I was originally on hydroxicarbimide for 8 years and by the end of that time was regularly having reflux but it was silent and waking up in the night having panic attacks. I moved onto pegulated interferon and was like it just switched off. Beginning of last year everything seemed to start again as well as dire tongue and dry mouth on top - I was put back on hydroxicarbimide in October to see if medication however think I feel worse of anything again! Do you have any suggestions how else I can help myself with this? I am just on nexium at the moment and having b12 injections.
Thank you
A bit more hx. Back in 2013 I had the worst bout ever with GI problems. GERD was terrible. Then I developed some kind of upper GI blockage and almost nothing would move out of my stomach. Not even water. After about a week, the blockage spontaneously released. By then the damage was done. I had developed significant gastritis and esophagitis. My platelets reached an all-time high - close to 1 million - about double what I usually run. I had been very stressed by a number if issues at the time, but for the first time in my life I experienced true anxiety disorder levels of chronic anxiety.
This started me down the path of learning more about the MPN and what having it involves. At the time I was diagnosed with ET. Turns out that my ET had progressed to PV, but my old hematologist missed it and continued to treat for ET only. In what can only be Divine Providence, I had to opportunity to attend a professional training about the "Gut Brain" as a part of the annual training I have to do for my profession. It was like a big light bulb went off and I started connecting the dots about what was going on inside my own body.
So now 7 years and three surgeries later, I have learned a bit more than I used to know about MPNs and related issues. My own situation is even more complex in that I also have the NF1 mutation (causing Neurofibromatosis type 1). As you may have guessed, I am now a much more active participant in all of my treatment for everything I encounter. Knowledge is power and we need to be empowered to manage our own care effectively to receive optimal outcomes.
Please remember I am not a physician - I am a MPNer just like you). To answer your question - there are a few things I could suggest.
1. GERD comes in different iterations just like MPNs do. Different meds work differently for people. There are other proton-pump inhibitors that may work better for you. Talk to your prescriber about other options, preferable a gastroenterologist. HU can cause GI problems: nausea, vomiting, diarrhea, constipation. (Note: HU apparently compromised my intestinal endothelium casing chronic constipation - part of why I do not take it anymore). If your sense is that the HU is making your GI issues worse then talk to your hematologist about it.
2. Perhaps Ruxolitinib (JAK-inhibitor) could be considered if HU and peg-interferon will not work for you. I believe this would be off-label use, but I have heard of others with ET trying it. There are other options to control platelets as well. Note that ALL of these medications come with their own risk/benefit profile. Not treating the platelet levels also has its own risk/benefit profile. So does the use of aspirin (which does irritate your stomach). This is really something to talk to your hematologist about. Suggest having this doc talk to you about all of your treatment options, including those that are not necessarily typical first choices. Sometimes trial and error is the only way to find what works
3. Finding ways to reduce systemic inflammation is in my view very important in treating any MPN and the related symptoms. Hematopoiesis - inflammation - immune response are all integrally linked. We know that inflammation, tissue damage, bleeding - all trigger reactive thrombocytosis. Reducing inflammation just makes sense for the MPN, GERD and any other inflammation-related symptoms (e.g. eczema, osteoarthritis, plantars fasciitis. etc. - I experience all of those including the etc.) I am working with the Integrative Medicine doc to deal with the inflammation and am using the following: Curcumin, SPM Active, L-Glutathione. This doc detected that I am also Vit B/Folate, magnesium, and Vit D deficient so I take those supplements as well. (Note - Nexium can make you magnesium deficient - maybe other nutrients too). I also focus on a very healthy diet - loosely an anti-inflammatory diet. I lost 50 pounds, which reduced all kinds of wear and tear on my body.
Noting my proclivity to be rather verbose, I hope this all helps.
Thank you so much for this - I really need to speak to my consultant and due to go next week so I will mention this! That’s if if can get in as imagine will change to a phone call and I don’t fancy walking into a hospital right now! Will make a note of the supplements too - I use a vit D spray and also used to take chelated magnesium but haven’t for a while
Losing 50 pounds is amazing! I have also changed my diet as found out I have a couple of intolerances but yet to see a benefit after only removing those out of my diet for 5 weeks.
I actually lost the weight by using an app on my phone "Lose It". really just a well programmed calorie tracker, but it worked. Did also increase exercise. If you look at anti-inflammatory supplements be aware they can potentiate the blood thinning effects of the aspirin. Important to find a knowledgeable doc as many don't know much about supplements and cannot give optimal advice.
I had the same problem, but I started taking Pantoprazole and everything went away, it's reflux.
No he didn’t have any suggestions. Waiting for scheduling to call. A spine doctor had prescribed Elivil for pain. I took one and threw it away. One pill....I slept off and on for almost 24 hours in a fog and also had a very dry mouth and that taste so maybe I over reacted and that one pill caused a lot of problems. Still have dry uncomfortable mouth. So who knows. 😠
Elavil (aka amitriptyline) can cause both drowsiness and dry mouth. It is a tricyclic antidepressant (TCA) that also has an indication for neuropathy/neuralgia and migraine/headache. TCAs work by preventing the reabsorption of the neurotransmitters serotonin and norepinephrine at the synaptic level. TCAs have been around for quite a while. While still in use for some purposes, they have been largely replaced by meds that have fewer side effects.
Sounds like you were one of those who found the side effects intolerable. I would think it is highly unlikely that the side effects would persist after discontinuing. While the side effects diminish on some meds after your body gets used to them, sometimes our bodies just do not react well to something. I would say you made a good call discontinuing. There are other options for pain management depending on the type of pain it is. Am guessing since it was a spine doctor, you are talking about some kind of neuropathic pain. There are certainly other choices if that is the case.
Not sure how relevant the dialogue with BeckyDing is to your situation. You might want to look at it. Systemic inflammation can be a real problem for some of us with MPNs.
Wishing you answers ASAP and a pain-free future. Please do let us know how you get along and what you learn. We all benefit from shared knowledge.
Wow lots of info. Thank you. Yeah I have a slipped disc and bursitis. Least of my problems right now. 😍
Can definitely sympathize. I have spinal deterioration in the neck, thoracic and lumbar regions. Chronic back pain is NO FUN!! I did try Lyrica (for back and joint pain), but it interfered with concentration so I discontinued it. I actually had more success with therapeutic massage, Qigong, and the curcumin supplement.
Suggest looking into the role of inflammatory cytokines if you are JAk2 positive. Systemic inflammation is not our friend!
Hope you find relief soon.
Thanks. Yeah JAK2V617F. Bone marrow biopsy tomorrow for confirmation if it’s E. T. Stay safe with the virus thing as well.
Hope the BMB goes well. Should give you more info, including JAK2 Mutant Allele burden if you don't have that already.
Please let us know how it goes. thoughts and prayers headed your way.
vitamins 
ET but with falling platelet counts
Covid - an odd experience ( ET JAK2 Hydroxycarbamide)
