IDIOPATHIC ANGIOEDEMA

Hi,

I have been taking Tranexamic Acid for angioedema for about 2 years and yes I do have fatigue, sometimes exhaustion and sore joints and muscles.I have vasculitis though aswell so I put this down to this, I never thought about it being due to the medication.

I dont take huge doses as I have high cholestrol so I take 500mg x 2 twice a day, I was told to take double this but didnt want to risk it. On the whole this smaller does makes the angioedema better but it doesnt take it away altogether as I do get runs of swollen lips or eyes or throat but nothing like it was and I have got used to people staring at me on the bus!

Hope this helps

So pleased to hear of you surviving so long! ! I feel encouraged. (I almost died in 2009) I have no joint pain/tiredness and have been much more stable with tranexamic acid. Tiredness I get because I loose sleep when the stridor is not being montored or treated well enough. However, I am a very fussy eater - so no chance of getting uric acid in my joints. [Try a few weeks on green and orange coloured vegetables, poultry, beef and lamb, oats, rice]. I am allergic to potatoes, oranges and wheat,and I avoid seafood, nuts and strawberries. I eat alternative breads made from Kamut, Spelt, Rye, Millet, Barley ( but no wheat); NO YELLOW FOOD COLOURING! I am ok with dairy and soy, but only diary wholemilk ( I cannot tolerate skim milk). I can eat in Thai, Vietnamese and Indian restaurants OK. ( just avoid tandoori and bright yellow curries though)

Taking 3000 mg tranexamic acid daily ( 3 x 2@500) for 3 years now, plus 1 x cetirizine daily (one or two more daily during attacks) and steroids (5 - 12mg per day as required). When I have attacks ( e.g. if I wake with stridor or am swelling up) I now have a prescribed plan: take 1 x cetirizine and wait 15 to 30 minutes; if I am too far gone on waking ( throat too swollen) I also take 25mg panafcortelone steroids- wait 15 - 30 minutes, and take 25mg again if needed. 50mg means I should go to the hospital or GP, but 50mg steroids in an attack holds me. I see the doctor next day and it takes forever to reduce the steroids again back down to 5mg. Have an epi pen - for 3 years now, but never had to use it as the 25 + 25 steroid remedy holds me during bad attacks. ..But only since I started using tranexamic acid.

When attacks are bad (- i.e you have outrageous unbearable pain like a gall stone attack, or are severely swollen/ or swelling too rapidly) ; always go to casualty at the local hospital..Mine treats me with a 200mg injection of steroids. Last two attacks required this treatment to be repeated ( i.e. 200mg in emergency, plus 200mg and hour later) but it apparently saved my life. Following this always have blood tests done to monitor your C1 / factor 4/white cells etc - if you have this awful condition, you know what a blood test is!

Cant find a sufferers group in my country so thanks very much for having this patient blog for us.

Hi,

   I am so glade that you survived that disturbing disease. Actually, I am not here to answer your question, I am here to ask you a question. Did you really cure it? and Did it go away?

Hi   am taking that at present    at least 7 x 500mg a day     but my angioedema still trying to come up      it makes the joints hurt    but i am tired anyway friom scratching all night     last time it took it i reduced the dose slowly over a few weeks and the angio stopped         may not be so lucky this time     maybe you should have a thyroid check   as this can caiuse and out burst iof angio   sylvie

Hi, my med mix now includes dapsone and that has helped to reduce my angioedema even more. I take 100mg daily x

Ps I have had my thyroid checked, including antibodies but all ok. Have your B12, vitamin D and calcium checked, these are often low with conditions such as ours, I have B12 injections every 8 weeks and ad cal for the other two xxxx

Hi Winter64

I am still waiting for an apt for a immunologist as i have never seen one before despite having suffered this horrible condition intermittantly for 50 years   I am taking 500mg x 8  tranexamic acid a day to suppress one of the worst outbreaks i have had if i take less i am itching everywhere  although the lumps are smaller  goint to the docs next week but had to wait for an apt  will ask them to check my B12 and calcium     what type of angioedema have you got and how bad does it get for you    it is a huge help to speak to somone else who has this problem   xx   

Hi Sylvie,

im not sure what you of angioedema I have other than it isn't the hereditary type. Mine came on in 2005 along with urticaria so I was referred to immunology for investigation. I have been under them now for 10 years. As time has gone on I have developed other urticarias, so I now have chronic, pressure, delayed pressure, cold and dermographism along with urticariasl vasculitis. My wheals didn't respond to antihistamines so I was sent for a biopsy and they found the vasculitis. 

My angioedema affects my face and hands and I think I get internal gut angioedema too. Before tranexamic acid and dapsone the whole of one side of my face would fill with fluid from my eyebrow down to my chin and it was so heavy with the fluid it would drag my face down. When I got the tranexamic acid it just went in my eyes, my mouth or my throat, but I didn't need an epipen. It would start on my lips at one side and then through the day move over to include all my lips. 

My current mess are: 100mg dapsone, 180mg fexofenadine, 300mg doxepin, ad-cal, B12 injections. This seems to keep things roughly under control, I haven't had any remission in the past 10 years and if I'm late taking my meds I start popping up in wheals and swellings, but it's much better than it was. 

I go to a specialist immunology and allergy unit here in the North, I think there is one at St Thomas in the south. 

I have muscle and joint pain, hair loss, headaches, fatigue, weight gain, etc and that has never changed, but I still work and you just plod on don't you 😄 xxxxx

Hi Winter64

thankyou so much for answering me    I live in S yorks    

when i was a child it was urticaria with some sewelling sometimes  and people just ignored it  as in doctors parents etc   the episodes would last 6 weeks or so  as i got older it got much worse     inm y early 30s i had several episodes with face mout swelling masive wheals  itching manically    antihistimines stuggled to control it     but it baited after 9-18 months    i had an uderactive thyroid  a few years ago  i was attending the skin clinic    they decided after 6 month sof knowing to treat my thyroid  and it stopped dead   within 2 days of taking thryoxin  if my thyroid goes out of sync it flares again    last year i had a really bad stomach and the agioedema flared up very bad  everywhere  3 months down the line i asked for a test for Halico bacter pylori    (germ that causes ulcers )

when they treated that which is antibiotics for a week   it stopped dead   prior it was responding to nothing    but i am luckier

than you as i have had several months sometimes years in between attack    I believe it has a cause that sets it off    they know thyroid and Halico do it 

i think we just dont know what the trigger is        the only thing different for me is 2 monthsago ny eye pressures were high (start of glaucoma)    they gave me drops for my eyes the first lot took my  blood pressure down and made me ill and faint all the time    I stopeed them and went back they then gave me Lumugan   2 weeks after using them the afiodema flared manically     looking on the net this has created 14 incidents o fpeople like you and I  they said its the preservatives in the eye drops       i have never seen an immunologist    but am going to   I cant imagine how bad it is to have no reprieve for 10 years    i am so sorry for you

at present its very bad the tranexamic is the only thing that works  but i am taking 8/9 a day  if i take less i am still itching bad but the lumps are not as big   are you allergic to any thing in particular   ?  

when i see the specialist i will ask dapsone etc    the last time i took tranexamic   i took enough to stop the attcks coming   then over several weeks reduced the anexamic a little at a time   going back up if it started again     until  i stopped them altogether     and it stayed away for 5 years     sharing infomation is the only way to help each other    I know what  works for me wont necessarily work for you    but maybe there will be a common line somewhere     medical science has not cure at present for this rotten condition    and only people who have suffered it can know how awful it is       when my face and lips swell and i can feel my gums swelling its quite alarming      how awful for you  to have the swellings     but like me i went to work  despite no sleep and looking awful itching to death

i do hope the drugs you are taking  keep it at bay   thankyou for talking to me   xx

Hi Sylvia, if you are in S Yorks you are in luck. The immunology unit is at the Northern General in Sheffield, which is where I live. According to immunology I don't have any allergies, they have never tested me because they said because I didn't respond to antihistamines it wasn't an allergic cause. So I only have an idiopathic diagnosis. As my current meds keep everything reasonably under control I just go for a check up every 6 months and have bloods done. I also see rheumy at the Hallamshire for vasculitis and gastro on and off for my tummy issues with other departments thrown in when stuff crops up. Lol  My H pylori was ok. Mine just rocked up one day and never left, I have taken tranexamic acid every day since I first saw immunology in 2005. It makes my period lighter so it's all good, although I'm 50 so menopause beckons so I have had them check all my meds so I can take HRT when I need it. I hope you get some help and something that works all the time for you. Karen xxxx

Hi Karen

what is vasculitis    how does it affect you       when i eventually get to see a specialist  i will ask about Vit b12 d and calcium       so little is known about this condition   its so frustrating      i think my doctors have been rubbish   i asked them fro tranexamic    as being the only thing that worked when its very bad   and she prescibed it and then said in future go to A&E     so i did when it was manic and after a 4 hour wait they said they could not help me

Lately i have noticed on the huge ones on my legs where they have been the skin is dried out   the heat coming from them was like a radiator   its as if they have dried my skin from the inside     and the lumps had gone down but the skin was so sore     and still red        odd isnt it      not had that before  

It will be the Northern that i go to

although Notiingham have a good immunology dept  that specialize in Angioedema         I may have to pay to see the one at Northern if the waiting list is high  as i need treatment for Glaucoma and that is on hold at present because of this outbreak

does the tranexamic cause hair loss too or it something to do with the other drugs    how awful for you       i am on the max of tranex   at present  not sure how bad they are for you but my joints hurts

no drug is good long term     but in your case the swelling has to be stopped    what a rotten condition this is     you sound much worse than ,me    nice to talk to you    sylvie xx

forgot to ay 180mg fexofenadine  is telfast  which is an antihistimine and does not work for me  any more    x