Severe angioedema facial swelling

[tommyryy]

I am an extremely athletic gay white male age 64. For the past 12 years I have been plagued with swelling on feet, hands, groin, legs and wore of all my face. These attacks have been getting closer together and my approoach to dealing with this is to take one 25  mg benedryl  and  2 vitiman C with quercitin before bed.I still get the swelling which I can live with in the covered body areas. the itching of my hands and feet is overwhelming at times but usually goes away in a few hours. MY feet are very difficult. Somtimes I cannot get my feet into my shoes

This morning I woke up with a litlle numbness on my lip. I immeadiately took another 25 mg benadryl then a 20 mg Prednisone. Nothing worked. Within an hour my left side of my face was grotesquely swollen. I stayed home from work since I did not want to be seen like this again. In the past I would go to work but it is so embarrassing to be seen like this. I went to my GP and he gave me a shot and an Rx for more prednisoine. It is now 16 hours since i woike up and the swelling is substantially less but still evident. Based on past attachs it will be 3 or more days before all the swelling is gone.  My GP had previously referred me to an an allergsist sperecialist who ran all sorts of tests  for food and enviornmental  allergens and determined I  had angioedema and there was basically nothing  they can do for me.

I have a very high energy fast paced job which I totally enjoy. I have noticed that any breakouts I have occur 3-5 days AFTER a stressful time or event. Today is Friday and Monday and Tuesday were higher stress days. Has anyone else noticed a similar pattern. This also holds true for sexual activity. I am into extreme mountian biking and cardio exercise but I havent noticed a correalation on these activities. My GP is convenced it is a nut allergy but I know I am allergic to brazil nuts and cashews but all outher nuts dont seem to be a problem

I would love to hear from others and how you deal with this type of out btreak and any suggestions of things I am doing (right or wrong) Thanks for listening to me and God bless everyone

[peteruk]

As others have said, I am glad to find someone who has the same symptoms as I do. I get large swellings in the groin and on the face, and as you say the numbness starts for an hour or two before, and then the whole thing is gone in a day or two.

I have found a  once-daily single pill of any anti-histamine (taking Clarityn at the moment) keeps the condition at bay. I get the impression that its effectiveness builds up over a few weeks.  The important thing is to take the anti-histamine regularly, not respond to lumps, I think. If I try to stop the Clarityn, the lumps return within the week.

Peter

[crazy4zoe]

Also epinephrine 0.3 helps as well. I did not add that in my last post. It boogles my allergist. He has seen this himself oneday with one very severe attack that had been effecting my breathing. It also brought the swelling down on numerous occasions.

[crazy4zoe]

Hello,

I am new to this site. I hope you are still here. I see these posts are quite old. I have idiopathic angioedema with a delayed pressure angioedema. I have seen two world renowned specialists. My attacks are almost daily. It effects my mouth,ears,hands,feet,genitalia and I have swelled in my throat. The only thing that helps me is prednisone at high doses 60-70 mg. Once I taper down to about 30 I begin to swell. Now being a type 2 diabetic my levels spike over 200 when on the steroid.

I was wondering how you feel about the drug cyclosporine? Have you had any patients try this? I would appreciate your input. As I am typing now I am so swollen I keep hitting the wrong buttons. Thank you for your help.

Yours truly,

Melanie P.

[tommyryy]

Thank you for your response. I was wondering if this was HAE as opposed to ideopathic and now I know the answer. I have not had any abdominal or laryngeal attacks. It is very encouraging that there are options since the attacks are coming at least 3 times a week to various body areas. I have learned to adapt except for the facial swelling where now  I become a recluse because of the embarrasment. fivee years ago I went to an allergist and he said there was nothing hey could do- now I have some encouraement. Thanks Dr. Rajput

[Dr Rajput]

Hi, welcome to the forum, recurrent attacks of swelling suggests Hereditary angioedema (HAE), which is a rare genetic disorder resulting from an inherited deficiency or dysfunction of the C1 inhibitor. This may be associated with laryngeal swelling leading to respiratory obstruction. Hence, it is important to rule out this condition.
It usually involves three types of attack like-
The skin (cutaneous attacks)
The gastrointestinal tract (abdominal attacks) and
The larynx (laryngeal attacks)
There are certain known triggering factors like ACE inhibitors, stress, excitement, cold exposure, prolonged sitting or standing, and ingestion of certain foods. Hence, you need to identify this triggering factor and avoid the further exposure.
C4 and C1 inhibitor antigenic levels are recommended as initial screening tests in the patient.

Treatment options available for the acute attack are C1-inhibitor [C1 esterase inhibitor replacement protein (C1INHRP), Plasma and Antifibrinolytics against prescription.
I suggest you to consult immunologist for further evaluation. Take care and regards.