Angioedema - new thread

Number of posts : 1 Registration date : 2009-11-03

I saw a thread mentioning angioedema from a while back... Here's a new post for it though. Does anyone on the forum have angioedema?

Subject: Re: Angioedema - new thread Wed 04 Nov 2009, 9:30 am

Good Morning Rev
I don't recall there being a posting of the forum for Angioedema, but I did a search of the forum to be sure that I did not miss it. I still cannot find it.
But, I can answer for myself, I don't have angioedema. Is it just since starting treatment with Suboxone that you have developed it? Or is your case hereditary?
If you had no symptoms of Angioedema before starting treatment with Suboxone I would suggest that you notify your provider of your symptoms.
If you are having hives then that would more than likely be an allergic reaction to the medication.
For those of you on the forum that aren't familiar with Angioedema, I have researched the terminology and this is what I have found.

Angioedema: Like hives but affects deeper skin layer.

Hereditary Angioedema:

INH) which causes episodes of swelling (edema) in parts of the body. It is due to a genetic defect of chromosome 11. Hereditary angioedema occurs in about 1 in 50,000 to 150,000 people worldwide (1 in 10,000 to 50,000 people in the United States). It affects both men and women of all ethnic backgrounds.
There are three types of hereditary angioedema. In Type I, individuals have low levels of normal C1-INH. In Type II, individuals have normal or elevated levels of C1-INH, but it does not function correctly. Type III is an estrogen-dependent form of angioedema that occurs only in women. Individuals with hereditary angioedema may also
have systemic lupus erythematosus or other autoimmune disorders.
Symptoms

Although individuals are born with hereditary angioedema, most children do not experience symptoms until puberty. The symptoms occur in episodes or attacks which often happen for no reason. Other causes of attacks may be anxiety, stress, minor injury, surgery, or illness. Some women report more attacks during their menstrual periods. Attack symptoms may include:

Before the attack:

tightness or tingling at the site where the swelling will later occur
flat, red blotchy rash (erythema marginatum) breaks out
mood changes, anxiety, exhaustion

During the attack:

swelling of body parts such as hands, feet, face, arms, or legs
internal swelling in abdomen may cause pain, nausea, and vomiting
swelling of the airway may cause difficulty swallowing, change in voice pitch, or difficulty breathing

The swelling may take 24 to 72 hours to go away, but the attack symptoms may last up to five days.
Diagnosis

Since the symptoms of hereditary angioedema may be caused by other disorders (such as an allergic reaction), blood tests or genetic tests are needed to confirm the diagnosis. Two specific blood tests for hereditary angioedema check the level of C1-INH and whether it is functioning properly. If the disorder is present, the levels of C1-INH would be low or poorly functioning. Genetic testing could look for one of the known gene defects of chromosome 11 associated with hereditary angioedema.
Treatment

Medicine usually used to treat swelling, such as corticosteroids (like prednisone), antihistamines, and epinephrine are not effective in treating hereditary angioedema attacks. During an attack, C1-INH concentrate (available in Europe but not in the United States) or fresh frozen plasma (blood transfusion) may be given, as well as other medications for pain, nausea, and vomiting.
If a person with hereditary angioedema has frequent attacks, preventive (prophylactic) drugs such as danazol (Danocrine) or oxandrolone (Oxandrin) may be given.
If surgery or dental work is needed, preventive medications such as C1-INH concentrate, danazol, or aminocaproic acid (Amicar) may be given prior to the procedure.
New treatments

Three types of medications are being developed to treat hereditary angioedema. One type is a kallikrein inhibitor called ecallantide (DX 88), being developed jointly by Dyax Corp and Genzyme Corp. The second type is a bradykinin receptor antagonist called Icatibant, developed by Jerini AG. The third type is C1-INH concentrate products, some of which have been available in Europe and are being developed for the U.S. market. All three types of medications increase the levels of properly functioning C1-INH in the blood.
_{Sources:
Bas, M., J. Bier, J. Greve, G. Kojdo, & T.K. Hoffmann. "Novel pharmacotherapy of acute hereditary angioedema with bradykinin B2-receptor antagonist icatibant." Allergy 61(2008): 1490-1492.
Frank, M.M.. "Hereditary angioedema: the clinical syndrome and its management in the United States." Immunol Allergy Clin North Am 26(2006): 653-668.
"HAE Frequently Asked Questions." HAEA.org. United States Hereditary Angioedema Association. 5 Apr 2007 .
Heymann, Warren R., & Kathleen M. Rossy. "Hereditary Angioedema." eMedicine. 27 Feb 2006. WebMD. 5 Apr 2007 .
Zuraw, B.L.. "Novel therapies for hereditary angioedema." Immunol Allergy Clin North Am 26(2006): 691-708.}

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Subject: Re: Angioedema - new thread Sun 08 Nov 2009, 1:29 am

Hey, it's Barbara.

I've been blessed with healing scratches and cuts I get from work. I'm continuously getting little sometimes bloody places. I've been carrying antibiotic cream and bandades. I think being diabetic or enemic could develope an ulser of the skin.

Thanks for letting me share. I've got to go out and do a last check on the horses. I have a question before I go. What can you do for the sweating essesively? When I'm at work, I sweat a lot.

Well, got to go to beddie,

Yours in the dtruggle,
Barbara

Subject: Re: Angioedema - new thread Sun 08 Nov 2009, 1:29 pm

Hi guys,
I am just reading along & learning because I was not familiar with Angioedema before reading about it here. I, like Dee, am wondering if you have had these symptoms prior to beginning the Suboxone or if this is a reaction to the Suboxone? If it is a new symptom that has just begun upon you beginning the Suboxone, I would most definately let your doctor know what is going on, if you haven't already. Again, I am very unfamiliar with this disease, so I do not really know the urgency of the necessity of being seen.

I did also want to ask Barbara if you EVER FIND OUT how to make that excessive sweating go away, PLEASE (with sugar on top) pass along that remedy to me, as I will for you if I ever learn of a way that works. While in the house, I sit in tank tops & boxer shorts, with the windows open & Barbara, it is 40 degrees outside! Even housework has me sweating, not to mention chasing the 2 FASTEST kiddos that I have ever seen in my life! Angioedema - new thread Fresse

I obviously deal with the sweating issue as well, so hopefully between all of us, we may hear something that will help. I know cold rags on the back of the neck, your forehead & on your wrists will help, but how do you do all of that while you are working? If you have to, keep a personal cooler that is full of ice water that you can soak a rag with, if need be, as well as drinking as much of that cold water that you can possibly tolerate to keep your body temp down as much as possible.
As I am not working outside of the home, when I get overheated, I have the option to stop what I am doing & step outside or get a cold drink,etc. to do something to allow myself to cool off. But I would also love to know if there IS a way to decrease the fact that I am drenched after vacuuming even only one floor of the house, so I really do understand what you mean about being excessively sweating!
Please let me know if you do find a way that helps or if you try the cooler idea!
Love,
Beth Angioedema - new thread Herz

Number of posts : 256 Age : 67 Registration date : 2009-01-10

Hey Ladies, I use to be the queen of hot flashes and sweating! There is a product called "Be Koool Hot Flash Pads" I only tried it once but it worked. The company who makes it is called Kobayshi. Just google it. There is also another product but I forgot the name. I will let you know when I can think of it. Love, Cathy

Subject: Re: Angioedema - new thread Sun 08 Nov 2009, 6:03 pm

Cathy,
What does this Hot Flash Pad do? Do you adhere it to your skin as you would a nicotine patch or what? Why did you stop using them? Just because you had no more hot flashes or did you not like something about that product? Do you still suffer from the excessive sweating? If not, did it just go away on its own or have you found a different remedy that you have had better success with using? I hate to use anything else on top of everything that I am already on & relying on daily, but if it is not a "drug"- then I am much more open to the idea. I will go & look it up shortly. Thanks for the suggestion!
Have you had a nice weekend my dear friend? The weather here has been very beautiful, a little on the cool side, but nice, bright & sunny! Hope you & Jon have been able to take advantage of the weekend together!
I WILL talk with you more soon!
My Love,
Beth Angioedema - new thread Herz

Subject: Re: Angioedema - new thread Sun 08 Nov 2009, 7:05 pm

Cathy
Would you be talking about the Kobayshi hot flash packs? It is an adhesive backed gel kool sheet that you place on the rear of your neck under your clothing. It is an alternative to treating hot flashes for women that don't want to use the traditional Hormone Replacement Therapy.
You can read about them and order them here if interested. Kobayshi Health Care LLC
When I was still going through menopause I had hot flashes so bad. I hated it. Sometimes I still wake up at night sweating so bad that the sheets are soaking wet. My hubby tells me he doesn't need heat and all he has to do to stay warm is to lie next to me.
I have also noticed that when my Thyroid is acting up I tend to have hot flashes then as well. I am Hypothyroid and when it decides to act out of wack, I can tell y the way I start to sweat. I wish I could find something that would STOP it all.
As Beth said, if anyone has any ideas. Post away.
Dee

Guest

I started taking suboxone about a year ago and about 2 months ago I started having all kinds of problems only when Ive taken the suboxone. My knees and elbows ans wrists all hurt and are swollen. I have chest pain which I believe comes from my lungs becoming inflamed. It all started one day out of nowhere. I am in a catch 22 because I feel like crap when I don't take the subs but I also feel like crap when I do take them. Has anyone else experienced this problem and if so did you find out exactly why the subs caused it. Please help me I feel like Im falling apart. Thanks!

John

Subject: Re: Angioedema - new thread Sun 13 Dec 2009, 12:14 am

Hi John,
This is Dee and I am one of the moderators of the forum.
The first thing that anyone will suggest to you when you have new symptoms pop up when taking a medication is to speak with your doctor.
Have you spoken to our Suboxone Provider about this? Personally I myself haven't had any problems like the one that you just described. Does this happen only when you take your Suboxone? I find it strange that it suddenly started after you have been taking Suboxone for a year.
It cold be that you have something that is not related to the Suboxone going on. I would suggest that you have your doctor run a complete blood work up on you.
Do you have any history of Rheumatoid Arthritis? Do you have a history of lung problems or do you suffer from COPD?
Have you thought about switching over to Methadone? I don't know the availability of Methadone in your area. But it is something that you can check into.
Please talk to your doctor. If you are stopping and starting your Suboxone off and on you are putting yourself at a risk for relapse. I would hate to see you loose a years worth of recovery when there could be a simple solution.
Please keep me posted on how you are doing.
I also want to mention that it would be great if you would join register for the forum. It would be a lot easier for you to post as a member. Just click on the register tab at the top of the page.
Yours in Recovery,
Dee

Number of posts : 256 Age : 67 Registration date : 2009-01-10

Hi John, I had some of the same problems you had. My feet, ankles, wrists and hands would swell up along with shortness of breath. I thought it was from the Suboxone. My Suboxone Doctor sent me to have a complete workup and a MRI done on my chest. It turn out to be COPD with Emphysema. Once my COPD was under control with medication all the swelling went away. I also was retaining alot of fluid which the doctor gave me Lasix for. I would do what Dee suggested and speak to your doctor. In my case it wasn't the Suboxone.

Cathy

Number of posts : 256 Age : 67 Registration date : 2009-01-10

Hi Everybody, I am bumping this thread up. One of our members is asking about sweating as a side effect of Suboxone.

Thanks, Cathy