Pneumonia and pericarditis

[Looolooo]

So fed up. Not good at being patient. Pneumonia out of nowhere. Chest mri scan shows an old pericardial effusion and acute pericarditis. Honestly, was swimming 100 fast lengths of freestyle until a month ago. Now not allowed to do anything for 3 months. Need sympathy please. Feeling very sorry for myself. Been taken off of pegasys in terferon for a while, as jak 2 reduced to under 1% from 14%.. so fed up....

[hunter5582]

Can sympathize with multiple conditions and not being a good patient. Sorry to hear things are currently piling up. Hang in there my friend. It will get better.

[Amethist]

poor you, sounds awful 😞

Wishing you a speedy recovery and return to good health.

[Spanelmad]

Don't worry about coming off Peg ,it's taken a year for my platelets to.go out of range after going under 250.

[lizzziep]

Hope you feel better soon! Find some sitting down hobbies. Something creative to take your mind off things.

[RoundTheWorld]

How frustrating for you. Time to chill out and be a spectator for a bit. Hopefully before you know it you will be able to participate more again . Sending you healing vibes!

[Purplechoclover]

Awww sending huge hugs and when you have multiple issues going on it really drains you but keep on going you've got this xxx

[Looolooo]

Thank you all. Much appreciated sympathy. Feel better now! Sun is out today so will fill the spring with short slow walks instead. Those of you dealing with multiple things are an inspiration in your continued positivity. I shall take a leaf or two out of your books. Thank you again.

[Mamsusa]

oh you’ve got lots of sympathy from me! You’ll get better faster because you were already in good shape. You’ll get back to where you were!

[Meatloaf9]

Hi, hope you get things sorted out soon. Current problems may not be directly related to your mpn. No one could possibly be a worse patient than I am, 75 PV.

Hope you feel better soon , best always.

[saltmarsh]

Totally understand your frustration. I recently had an issue after a bike ride and immediately went into panic mode. And losing 3 months to an activity that is so much a part of your life is devastating. Hopefully you achieve a speedy recovery and are swimming much sooner. Very best wishes

[Penny-10]

Sending get well wishes and wishing you a speedy recovery.

[KLCTJC]

Sending you good thoughts for a speedy recovery! I think we all can relate to being “good” patients. And I know how it feels to get so far on your fitness journey and then experience a set back. But hopefully it will go by fast!❤️

[Looolooo]

Thank you all! X

[DJK12]

How unpleasant to be so unwell out of the blue when you are obviously very fit. Has it been suggested that peg could have caused this? I developed double pneumonia and pericardial effusions while on it and it then eventually transpired that this is a known though very very rare side effect. I had to come off it forever which was a shame as it had worked well on my platelets to the extent I didn't need treatment for them for a year. Then I was put on ruxolitinib. I hope you gain strength soon but don't overdo it too soon.

[Looolooo]

Yes, both myself and my doctor considered this as I've had a few other markers lately that have pointed to some other recent inflammatory side effects (ANA, mild Sjorens). Ive been on Peg 3 years now. As all of this coincided with results showing such good mutation reduction (to less than 1%, from 14%), we agreed that a break from Peg was indicated. So off Peg for now with close monitoring for any heamatocrit or platelet rise. Will let you know how I get on. I don't think I could bear the weight gain issues that come with Rux. (Very vain, I know).

[DJK12 in reply to Looolooo]

Not vain at all and this issue does come up on this forum quite often. However not everyone puts weight on. I've been on it about 8 years and weight has remained stable. My appetite though had diminished on peg and never really recovered and perhaps it helps I don't have a particularly sweet tooth! Glad you are being carefully monitored.

[Looolooo]

That's useful to know. Thank you. Glad RUX is working for you so well.