Anyone with a Primary Immune Deficiency or fatigue affected by Hydroxyurea?

[katiewalsh]

Dear Folks, Does anyone here with an MPN also have a Primary Immune Deficiency (PID) like Common Variable Immune Deficiency (CVID? I was diagnosed with that around 8 years ago and although I get regular infusions of other’s plasma to give me antibodies, it still leaves my immune system less strong than if I had my own antibodies. I’m also on Hydroxyurea for my MPN which was diagnosed 5 years ago. I just learned that my immune problems may be causing or contributing to my fatigue, a common problem in those with PI’s. When I recently increased my dose of Hydrea it lead to worsening fatigue. Sorry to make this so long but thought I should explain it all. So my question is has anyone else experienced any of this & if so did you find a solution? Thanks in advance for your help! Katie

[Tico]

Hi katie, don't have a PID but you must feel terrible with this and also coping with an mpn. Do you think the 2 are connected,or are they completely seperate? Atb,tina.🤗

[katiewalsh in reply to Tico]

Hi. I must be losing my mind. I replied to your post & it’s missing so I must’ve failed to hit reply. I wish I knew if they’re connected. But no one else has responded saying they have both & I don’t think my CVID is that much rarer than our cancer. I do hope they start learning more soon. Thanks for your reply, Tina.

[Tico in reply to katiewalsh]

Katie, i can reasure you that you are not losing your mind, the same was happening to me the other day, replies going missing,must be gremlins in the system.lol. Atb, tina.🤗

[Osteomyelio]

It is likely that many people with myelofibrosis disorders have immunological deficiencies but have never been tested- I feel this way because many cancers are foreign to the body and our immune system recognize the cancer as an enemy. The immune system may work overtime to fight the cancer and maybe the immune system gets “burned out” and becomes deficient. IIt would be helpful if more hematology/oncology patients could have an excellent immunologist evaluate them and treat them.

[katiewalsh in reply to Osteomyelio]

You’re right it would be good. Thanks for answering. Katie

[JuneKnox]

Hi there - I have found that having essential thrombocythaemia causes fatigue - whether or not I'm on HU. Sadly, the only solution is good food and exercise. Kind regards.

[katiewalsh in reply to JuneKnox]

What have you done for food & exercise?

[JuneKnox]

I just eat healthily - don't eat junk food and very little carbs. Exercise is limited as I am not fit generally, but walk as much as possible and keep moving. I am constantly tired but doing the right things helps - if I stay sluggish - I become sluggish. Hope this helps.