IDIOPATHIC ANGIOEDEMA

Im 54 - beentaking tranexamic acid for about 6 years for idipoathicangiooedema. ithas really bought my condition under control - no side effectsI am awareof.However strnage ou shoudl mentionjoint paiand attributeit to TR acid; I had a llot of surgery last year and struggled with reducing steroids after surgery; its interesting you mention joint pain, as JP has been an issue for me for about 9 months. We had attributed itto steroid withdrawal symptms not angiooedema. e.g when I stand after sitting,cannot move to step for about two minutes then Im OK.

Someone mentioned hormone treatment her on this iblog - that is what caused my angio oedema. Hormone treatment. Stop Dont do it! (I was prescribed JASMIN - now taken off the market in Australia. Thank God!)

I found this drug really helpful. it turned me around. It can be related to deep vein thrombosis - so my doctor checked out the dosage etc and monitors me. From what I have read on this blog, some people can tolerate less or more of tranexamic acid, so maybe give it a few months and then ask to drop the dosage a bit. If you are worried about pain that feels like it is "inside" your limb/leg, then mayeb speak up and mention it to the GP. I have joint pain which I attribute to coming down off steroids, rather than TR acid. I am down to about 1500mg TR per day, 20=50mg cetirizine; 2mg prednisalone per day. Durign an attack of angio oedema ( throat/chin swelling commences ten minutes or more after eating allergens) I take extra zyrtec, up to 12- 18 tablets (10mg). Swelling usually goes down within an hour. The TR acid really stopped me from having bad attacks. I have found it very good.

i am in Rotherham near Karen    in fact i think she goes to the same hopsital

citirizine  antihistimine does not seem to work on me if i have a bad attack they dont affect it at all  th tranexamic has been a godsend as it the only thing that works i am wary of the montelukust   i was told it works long term    no one docotores of hospital  seem to worry about contra indications on various drugs

i insisted on a liver fuction test as transexamic state frequent eye tests and liver functions tests if taking long term     but it was shrugged off when i said they should be aware and monitor their patients     the attitude i get is take the plls as there is no cure     after more than 50 years of this condition on and off    tranexamic is the only tablet that has given me relief in an outbreak i    i dont like taking citirizine its given in 10g tablets and i am supposed to take 2 a day i take one   they dont seem to do anything and they make my hair very dry

but he ho    4 tranexamic and 1 citirizine keep it under control proving i wear loose clothes  as close fitting clothes cause pressure and lumps   as for the montelukust i am not very happy about taking them   but take one a night   

take care   sylvia 

if the angio starts  to falre i take an extra 2 a day    i had aching knees fingers etc but it has not been so bad this past month so maybe my body is getting used to them     the immunologist wants me to stay on them for a year   over the years it has gotten worse  and antihistimines do not work on their own    it took about 4 weeks for the tranexamic to hold it back but nowadays i dont know i have it unless i wear tight clothes  eg jeans         i worried at first about taking them but the alternative is worse     after a few weeks i will try cutting the traexamic to 3  and if i get no lumps will cut it again until i can stop them    hope this helps     i did get tired at first too but am ok now    sylvie

I started tranexamic acid because of this discussion and farther investigation. I live in Virginia and when I mentioned t.a to my doctor he had no idea with I was talking about. He did research on the medicine and determine it was ok for me to try it. My angiodema only effects my face. I don't swell up very big that effects me being able to breathe but I am swollen everyday. I look like a big face woman. No one thinks my face is swollen they just think I have a big face. Then when I show them a picture of how a look without the swelling in usually hear O My God. To me I look like a man with the swelling. So far I know I swell with cold, heat, water, and stress. I believe maybe sugar. I ate a piece of cake and swelled up and also a banana. My prescription will be ready in two days and I will continue to follow up. I also read reviews about people using antidepressants with antihamines to keep the swelling under control. I am using antidepressants now as well because i also swell from stress St JOHN WORTS. I am thankful for this forum to be able to share information. I am just starting everything so I will you posted. I hope everyone can find the right treatment for them.

having had idiopathec agioedema most of my life  i have tried lots of drugs  i can go several years without an outbreak  but i have had it for 2 years at a stretch sometimes

this last 3 times i have found the reason  i started having drops for glaucoma and suffered for 7 months feeling that it had to be the drops causing me so much swelling itching everywhere   i saw an immunologist ahd he was adament it was not the drops     he prescribed 9 tranexamic a day 2 antihistimine and another tablet   12 a day and it was getting worse every day i finally stopped the drops  and it slowly diminished when it got out of my system  it took 2 weeks it has not come back   that was last September  when i stopped the drops    on another occasion it was hlico bacti pylori  that caused it   when that was treated it stopped dead     before that it was under active thyroid  and once that was treated it stopped again   what i am tryng to say is there is a reason  not easy to find it but look for anything that has been introduced just before it started especially medication    or something eaten that you did not have before   washing powder softner      i have in the past found tranexamic stopped it or brought it under control   but taking 9 x 500 mg a day is a huge amount and i am sure not good for you   that is what i took for 7 months   thickening the blood is what it does and for some reason that sometimes helps       for me the eye drops were new to me this last time   and the angio started 2 weeks after i began the eye drops it just kept getting worse as i used them they were latanaprost     it took 2 weeks to get out of my system and then the angio stopped completely     i found the immunologist useless all he wanted to do was give me more and more tablets and nothing was working    it would not work as i have an intolerance to the drops i was taking     absolutley proven    i know that if i drink a lot of citrus it can trigger an episode     but we are all different and there will be something that your body does not like that is on your skin or eaten or swallowed  or in my case out in your eyes       when it was Halico  which is the germ that causes ulcers  i had read it could be linked to angio and had for months had bad acid and heartburn   so i asked the doctor for a blood test for halico Bacti pylori   it came back positive    they prescibed antibiotics for a week and the halico stopped but so did the angio   half way through the course of  antibiotics i was taking   try the tranexamic but look at your lifestyle habits drugs  ... and eliminate what you can but do it for at least 2 weeks 

hope this helps sylvia

​I hope you all see this and share. My angio oedema has changed its presentation and is givign me far less bother, so I want to share whats happened.

​Firstly I am still taking 1 x 500g tranexamic acid every mornng, and 30g Cetirizone daily. If I feel slluggish..."not quite right" (we know what we mean!) I take a couplel of extra Cetirizone, usually at night. If I feel nauseous I take 1 x ranidtidine, but is rare these days, ..after a rich meal or *too much alcohol. (*= more than 3 glasses sipped slowly over 2- 3 hours).

​My angio oedema (AO) commenced in 2005, but gave me 3 rushed trips to hospital with pain attacks/swollen face in 2008. I had 10 years of watching my abdomen grow and my face get puffy more or less constantly. Two stupid doctors even said "Have you tried loing weight??" and "Have you tried getting fit??" My response? - "yes but look at me, I have skinny arms and legs and whatever it is , it isn't evenly distributed in my body like fat! So don't tell me its fat!" ..and "Yes I have tried getting fit. It hurts in my abdomen, and makes me feel nauseous".

By 2013 my specialist knew it was idipoathic, and and I was on high doses of Tranexamic acid (6 x500g daily, +prednisalone+antihistamines). With quarterly checks and blood tests, my specialist looked at my blood (C1 / factor 4/white cells ) White cells count changes during attacks evidently.  Its a blood protein condition  effected by adrenaline producing events. Thats why stress and shock cause us to swell. We have a trigger - next our body produces substance 1 to deal with the trigger, and substance 2 to deal with substance 1 and substance 3 to deal with substance 2. My body could no longer produce substance 3 - over so many years my capacity was decreased and so I started having very bad attacks and I had finished up with Chronic AO.

I began to ask the specialist if rather than treating the symptoms we could look more closely at the triggers. He explained that what a body does - in an angio oedema attack - is the same or very similar to what it does after a person has an organ transplant and the body rejects the new organ (people swell).  SO I deconstructed his thinking and said...can we just find out if my body is reacting to something inside it, that we dont know about?? What tests do we need to do to establish that I dont have something my body is rejecting.

So the GOOD specialist listened, and said OK lets try it your way and see if there is anything inside you, and had  started sending me for abdominal ultrasounds.   ​Unfortunately, all the ultrasounds I have had over the last decade were not picking up anything.

​Then in late 2013 I lifted something very heavy, & I had a bad hemoerrage (a mentsrual) and took no notice thinking it was due to age (earlry 50s). I kept working all week. Then I was sent to Emergency, from where I had a full hyserectomy a few days later. In removing the womb, (womb also 3 times as thick as it should be)  two very large tumours  - grapefruits- were found behind it and one small one [figs] (these three tumours were outside the womb, and had not shown on any ultra sound). While operating, the surgeon saw another tumour [plum sized] on the outside of another organ  and so three months later my ovaries and another tumour (no 4) were removed; while operating he saw another tumour  (another grapefruit)  Tumour 5 was removed in 7 1/2 hours of open surgery; that saw me also loose my gall bladder (squashed flat by the tumour and so ...unable to show on the ultrasounds I had for ten years); 1/3 of my liver on one side, and another small tumour[fig].

​Having CT scans was helpful in all of this.

To recap?

​Doc whats my body doing?  [Him: "Its mimicking organ transplant rejection."]

​OK, can we find out if I have anything inside me my bod is rejecting that we dont know about?

​I can look back now and call it my Fruit Platter -  the plate, three grapefruits,  a plum, and three figs, plus 3 1/2 organs removed.

​

Slowly I am starting to feel much better. My angio oedema is abating and sometimes I have normal reactions ( just hives and nothing else!). I take 1 Tranexamic, an 2 cetirizone every morning, and no steroids for the last 2 months.      

​My body was mimicking organ transplant rejection.[bouts of angio oedema]  I have had 6 tumours and 3 1/2 organs removed, and now my health is improving.

​My advice is if you think something may be wrong, keep pushing to get it investigated. My stubborness and a couple of doctors/ surgeons willing to think outside the box, saved my life!

What a dreadful experience you have had    thinking outside the box is not what some doctors do     thank god your doctor listened    still goes back to my theory that it has a cause   just finding it is the problem  luckily for me it was more simple yours was an underlying serious illness that needed treatment and your body was telling you   

Its hard to imagine you having so many serious problems that are potentially life threatening left un diagnosed    on the plus side if you had not had agioedeama you may not have found the tumours until it was too late

I understand the rejection as in transplant    your body does fight itself  with this problem      i am so very glad you had a good doctor and the sense to know your own body and insist on investigation    i do hope you can keep the angio under control with tranexamic    and antihistimine     the antihistimine do make you tired it also caused hair loss     and the tranexmic in large dosed gave me the runs       i am grateful that i get respite from it because mine has at the present stopped    take care of yourself and i wish you all the luck in the world

I have just started tranexamic acid and I was wondering for those of you that it worked for how long did it take.