Shortness of breath

[Cja1956]

Hello, all,

As some of you know, I’ve had ET for 11 years which progressed to PV about 3 years ago. I’ve always had shortness of breath when laying down but now it seems to be worsening, starting earlier in the evening and causing me to have trouble sleeping. I started anagrelide about 3 weeks ago, in addition to my Jakafi I’ve been taking for a while. Any thoughts?

[socrates_8]

Hi Cja...

Sorry to hear that you are having some problems...

I haven't heard of anyone before being on Jakafi & Anagrelide?

However, I have heard that there are known cardio' issues for some people when taking Anagrelide...

Best you chat w/ your medical team about this, and possibly even seek a 2nd opinion, as to the wisdom of Anagrelide?

Are you platelets too high? If so, how high, and how long have you been on this combination therapy?

Best wishes

Steve

[Cja1956 in reply to socrates_8]

Last time I went to the hematologist, my platelets were 668. That was 3 weeks ago, when he started me on the anagrelide. He wants to see me again this week but I have an appointment with an mpn specialist tomorrow, the first time I’m getting a second opinion in 11 years. I feel a little disloyal, but I’m interested in what she has to say. I’ve also been dealing with increasing headaches and pulsating sounds in my ear. Nothing too serious compared to other people, but still bothersome.

Take care.

Cindy

[socrates_8 in reply to Cja1956]

Cindy...

Your symptoms are very important, and you should always remain aware of the changes within you, as they may provide some clues to the events you are experiencing...

Symptoms might sometimes be our only 'Early warning system'...

Please do NOT feel disloyal! We MUST always be our own best advocates in order to make certain that we receive the best care available to us all...

Please feel happy about the path you have chosen, and best wishes w/ seeing the MPN Specialist.

You guys in the UK are so fortunate, as here in Australia, MPN Specialists are such a rare commodity!

Best wishes

Steve

[Cja1956 in reply to socrates_8]

Thanks so much for your kind and thoughtful response. You are always very supportive. I am kind of excited about seeing the new specialist. By the way, I’m in the US.

Best wishes,

Cindy

[socrates_8 in reply to Cja1956]

Morning Cindy...

Ah... Apologies... Well, the USA has even more MPN specialists...

Cindy, please also feel free to drop in on our Australian MPN Patients FORUM too... No joining fees!

mpn-mate.com/forum/viewforu...

Best wishes and do let us know how things progress...

Steve

(Sydney)

[jointpain]

Are you on iron tablets or infusions? Your breathlessness and pulsatile whooshing in your ears sounds like your hgb is low.

[Cja1956 in reply to jointpain]

No, my doctor didn’t want me to.

[jointpain in reply to Cja1956]

Find out what your hemaglobin numbers are, and go from there.

[Arty16]

Hi anagralide could be the culprit. When I started on it my consultant said I had to stick with it for 6 weeks as he found if u got any sideaffects they go or get better within that time. I have been lucky and have no sideaffects. Hope u get it sorted.

[hunter5582]

Per the ePocrates drug monograph, dyspnea (shortness of breath) is a common side effect of both Jakafi and anagrelide. While the interaction check does not show any specific interactions, it would make sense that your risk for adverse effects would increase when both meds carry the same risk. Given that you specify this happening when you lie down, I would wonder about apnea, perhaps exacerbated by the meds. Have you ever had a sleep study (test for sleep apnea) done?

You can check for this sort of information yourself by getting a free account from ePocrates that lets you access part of this professional grade service (drug monographs and interaction check). epocrates.com/ .

Regarding seeing an MPN specialist, there is no issue of loyalty. This is about your health not the doctors ego. The majority of docs, even hematologists, do not have the KSAs to effectively treat patients with MPNs. They will often rely on "standard protocols" rather than looking at your individual MPN profile because they do not have the knowledge/ experience to do otherwise. If your existing doc has a problem with you seeking consultation with a MPN expert - I would find a new local doc. The doc works for you, not the other way around. Docs who put their own ego ahead of the patient's health needs are not the best choice in provider.

I have learned the hard way that assertive patients receive higher quality care. Passive patients do not. You have a fundamental right to determine what your treatment priorities are and who you wish to have provide the services. Please always feel empowered to do what is in your own best interests.

All the best.

[Cja1956]

Hi, Hunter,

Thanks so much for taking the time to reply. I haven’t told my regular hematologist about seeking a second opinion. Over the last 6 months, I’ve been getting copies of my results which I will bring to the mpn specialist today. It’s because of this site and people such as yourself that gave me the confidence to consult a specialist in in this particular disease. My appointment is today.

Thanks again,

Cindy

[Wyebird]

Hi laying down to breathe is harder than sitting up. Are you anaemic? I’m on anagrelide and hydroxicarbomide.