Painful ankles/feet due to AAD

[amberbond]

Hi I have alpha1 antitrypsin deficiency sz type. In the process of having further investigations/tests. Does anyone experience the painful odema in feet and ankles. It drives me mad.

[freefaller]

I do not have the alpha 1 anti trypsin deficiency but do have some things that we thought may be caused by it which was why I had the test. I now have another thing with painful ankles as you say. Maybe I have phantom alpha 1 anti trypsin deficiency!

Are you seeing a consultant if so ask about it and see if something can be done to help. Constant pain is not easy to live with.

take care.

[Tenter]

Hi Amberbond

Sorry to hear about the your odema and Alpha1 Antitrypsin deficiency. The way Alpha1 Antitrypsin deficiency was explained to me, was, that it was a protein produced by the liver.

I was diagnosed with alpha1 Antitrypsin deficiency about a month ago, as part of an investigation into whether I could use Nintedanib tablets, to slow down my IPF. Unfortunately, They found a bigger problem to worry about, a Shunt that recycles blood without oxygen around my body, which explains why I can't walk more than a few steps, even with oxygen @15 lpm.

Therefore, I am afraid that Alpha1 has not been a priority to investigate.

As yet, I do not have any swelling of the feet or ankles.

Just one thought, as it is a liver deficiency, if there a Liver forum on Health Unlocked it might be worth posting on there as well.

I hope the Dr's get to the bottom of your problem soon

Best Wishes

Tenter

[katieoxo60]

Hi Amberbond, I have problems with my feet and ankles but it is not due to my lung condition. However some people do get this due to strain on other body organs from the lung condition, so perhaps you should ask more questions and maybe someone may know, if it is due to AAD or other related issues., Good luck with finding an answer. xx