Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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leg and feet cramping

blynn5
blynn5

Hi All,


I wa diagnosed about three years ago with CVID.  I have been doing sub-q Hizentra since then and really have had no problems.  The last few times, I have had my legs and/or feet want to start cramping.  I just did my infusion this last Tuesday and Thursday night I woke up with the worst leg cramps/charlie horse.  Has anyone else experienced anything like this?  Is it related to the medication or is this just a coincidence?  Thanks for your input.


Becky

DeniseHB
DeniseHB
HI Becky,

I too, am on Hizentra subq, and from time to time, I get leg cramps, which is usually attributed to not being hydrated enough. Make sure you hydrate, the day before, the day of and the day after. Leg cramps are attributed to temporary low levels of potassium, so be sure to add potassium rich foods, bananas, etc.

Denise
blynn5
blynn5
Thank you!
Alissa0123
Alissa0123
Also make sure you aren’t clotting. ask your doctor to check your d dimer.
jpowers1976
jpowers1976
this is exactly why I joined. My issue is a much wider range however. I experience cramping with any muscles that I use to what my body now considers excess. (which isn't much, this has become a huge problem). My hands cramp up after doing every day tasks, using tools, carrying something heavy and so on. I get it in my legs and feet the worst. It disrupts my sleep and renders my limbs useless once they've reached their limit. No one has been able to explain or do anything about it. I decided to make Physical Therapy a frequent thing and that is helping but on top of everything else... it's pretty rough. I can't stand for more than about 2.5 hours and can only do the minimum walking that is required of me. I hope it doesn't get this bad for you.

I am CVID with NRH complications, (liver function, spleenomegly, thrombosis etc) I have both infectious and non-infectious symptoms.