I was diagnosed with ET last year. I have been living with many health problems as I have had Hashimoto’s for most of my life and Sjogren’s for a long time.
I am 66 and had a heart attack ( 100% block of LAD artery) February, 2023.
I hadn’t been diagnosed yet with ET and none of my doctors noticed or cared about my rising platelets at the time.
For years before my heart attack I had difficulty with breathing. I do have asthma and before the heart attack it was considered mild. Last year at my annual Pulmonary checkup, I was told my asthma had worsened to moderate and was put on daily steroid inhalers and an a bronchodilator for exercise. This helped my breathing somewhat during exercise. I was extremely active for most of my life, at the time of my heart attack, I was riding my bike 40 miles most days. But, it was getting more and more difficult.
I went to my current cardiologist at the time as I had developed some arrhythmia and chest pain along with my shallow breathing. He did an EKG and a stress test.
He was so impressed by my fitness that he dismissed me, saying that I was so fit I did not need a cardiologist anymore.
I told him, “but I still have all these symptoms!”
Bottom line…he did nothing and 6 days later I just made it to the hospital in time (in an ambulance) to save my life.
Here I am two years later, with My platelets at 1000 and I’m not riding 40 miles a day anymore, I have much more difficulty breathing with chest pain and mild arrhythmia and none of my doctors can figure out why.
I had to stop using the 2 inhalers as I was vomiting and nauseous for 3 months on them. I’m taking Montelukast daily and using the bronchodilator, Levobuteral but still can’t do what I want actively.
I discussed this with my MPN specialist in N.Y.C. and he told me that ET would not cause shallow breathing unless there was a pulmonary embolism. He told me to find a new pulmonologist.
I had had two cat scans one for my current cardiologist(not the old one) and one for my pulmonologist because they wouldn’t consult with each other as I requested to come up with one prescription together so I wouldn’t need 2 cat scans!
They told me everything was fine!
So, after going on & on about my history leading up to my current breathing problem, this is my question…
Does anyone with their current MPN diagnosis have difficulty with shallow breathing and have you found anything to help it?
Thank you in advance 😊…
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Bikelove
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Your various breathing/lung issues are common elements of Sjogren's. ILD and COPD are two Sjo lung conditions with names. I have mild COPD started within months of my instant Sjo. Hashimoto’s is also a common companion to Sjo. Same with arrhythmia and chest pain, these can be attributed at least in part to Sjo.
Your Drs comment "you look too well to be sick" is a typical Sjo aspect too. We can be wasted inside and look fine. Our last social event 18 months ago I was told "you look great", same by one Dr.
Of course MPN symptoms can overlap, but odds are your Sjo is a major contributor. I'd like to say go see a Rhuem, but Sjo specialists are much rarer than even MPN experts. If you can find a Rheum that understands the reality of Sjo you should book a visit. Sjo pts often have a page full list of Drs.
There are no approved treatments for Sjo, (this is about to change) but your Dr may suggest HCQ, it helps many with the fatigue but not sure about the lung. There are several phase 3 trials ongoing right now, I can point you to them if you're interested. This after years of duds. But the MPN can be a problem, also my Rux is an issue.
As you may know, IFN would be contra indicated for you per the labels, with pre-existing autoimmune (A-I) disease. A small advance, it's now called Sjogren's Disease vs Sjogren's syndrome. This identifies it as a specific and defined A-I disease rather than a loose collection of symptoms.
Thank you for your reply Epguy…if you remember we have spoken about our Sjogren’s a while ago. I have an excellent rheumatologist who has been my endocrinologist and primary doctor as well because he’s smarter than any doctor I’ve ever seen.
He was the one who recommended that I ask my pulmonologist about trying Montelukast.
I also requested the CT scans from my pulmonologist and cardiologist and have asked my pulmonologist several times over the years if I should be concerned about COPD or ILD since I have Sjogren’s, but she assured me that I do not have either.
Hope you are feeling better now since we last communicated…
Sorry for the oversight, I'm up and down on the Sjogren's ride. I did see the discussion of the referral to here. Did you get that 2nd opinion from a different pulm your MPN Dr suggested? My pulmonologist will not give me a COPD Dx either, she calls it "moderate persistent asthma" and thinks only ILD can come from Sjo. A quick search shows COPD is common with Sjo. Either way mine came with Sjo.
Has your MPN specialist recommended action for the 1000 PLT result?
You could also post your conditions on SP to get both MPN and Sjo pt experiences.
No worries…Sjogren’s does keep us on an interesting ride. I just saw my MPN specialist a few days ago and will look for another pulmonologist for a second opinion.
MPN specialist recommended Hydroxy. After a few appointments with him, he is finally hearing me about my goals for treatment/non-treatment. I explained to him about how my quality of life has been deeply affected by my other diagnosis's and my goal is to enjoy more quality of life not just add more years…quality over quantity. He’s not happy about it, but he understands.
My first choice of treatment would be some kind of interferon, but as you know isn’t really an option for me. So, I’m taking every precaution I can to prevent risks such as a stroke or another heart attack.
I eat a healthy diet, exercise as much as I can, take a statin, low dose aspirin and pester my doctors to keep an eye on my risks.
Agree, getting your PLT under control is job #1 to remove that influence on the body's dysfunction. Then separating the MPN from the Sjo should be easier. Note that a max safe Plt is from 400-650 depending on Dr's practice.
Understand on the QoL, the Sjo forum is a place to really understand how precious that is.
There is a Rux trial for ET. If you happen to live near Boston:
Hi I’m on hydroxycarbamide 9 years now at 1500 mg daily
I had shallow breathing and chest pains in January gone my GP referred me to the NHS cardiologist at Macclesfield 53 weeks waiting list !! I paid privately for tests including a CT angiogram which shows moderate to severe LAD blockage with mixed plaque and severe diagonal artery calcification they gave me a score of 538 my GP says there’s nothing wrong with my heart!! I’ve just had a phone call this week with an appointment for Christmas Eve! Crazy but I’ve taken it as I’ve paid £4000 on private consultations I’m on Apixiban asprin atorvastatin 80 mg propanol Irbesarten and amlodipine now and still get the chest pains
I have very different diseases from yourself, some of which are serious like yours. Recently my Haemotologist took me off the Hydrea I have been taking for my ET for some years, this was on the assumption that other medication would address my platelets. It didn't. My platelets went through the roof and hit 1000 and I could barely move around with the most extreme weakness., I did experience a period of shortness of breath. I went back on the Hydrea (Hydroxyurea) and within 10 days my platelets reduced to 600 and I felt great again.
High platelets DO cause many physical symptoms - irrespective of Doctors telling you that they don't. They do! Most definitely.
If you don't already have one, you should see a Haematologist right away, those platelets are high and you are at other risks. I don't know if an MPN specialist is like a Haematologist?
The only way you can test this is lowering your platelet count and seeing if that improves your breathing.
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