Over the past two months I have had four instances of severe angioedema, three of which have resulted in hospitalizations. I went to an allergist yesterday and he was completely unhelpful, basically asking me if there was a food, drug, or environmental connection to this allergic reaction (there’s not). Is this a normal lupus thing? he told me that the epi-pen and benadryl that they gave me for this is useless, so what works in controlling it? I’m at a complete loss. There must be answers that this particular allergist wasn’t aware of! Thanks!
I've had angioedema & swelling of my tongue in the past. It usually happens when I try to reduce Prednisone. I have an epi-pen & I take Benedryl. Lupus can cause this & I had it for a yr before being diagnosed. I also had severe hives. Tagamet is also good. I've been to the ER & had IV Tagamet that takes the symptoms away quickly. The symptoms are very distressing, hope this helps. I also went to allergists who weren't very helpful. I was tested for allergies but had none. You should talk to your Rheumatologist if the angioedema persists.
The same thing happened to me last year. It went on for months before I noticed a trend that when I took ibuprofen, my lips and face swelled and I got hives. So I tested that theory 3 times and each time angioedema occurred. So I even tried aleve and aspirin, and the same thing happenef. I did some research and learned angioedema can be a result of lupus and exacerbated by NSAIDs (ibuprofen, naproxen, and asaprin.) I know how dependent most of us are on those but I haven’t taken then for almost a year and its never happened again. This may not be the case with you but maybe this will help:-)
Hi
I had an isue with swollen tongue almost 2 years ago., not to the degree that yours was. That was before I was diagnosed with Lupus. I had an ent tell me I had a fasiculating tongue which sent me to the neurologist who sent me for a brain scan whi ch showed nothing. It lasted for a few months and went away! Go figure!!
Good luck
Cindy
I have this too. I think it can be a lupus thing, no one seems to know what causes it. Mine is not too bad now, but I can
tell it is just too big for my mouth. I have ripples on the side of it from my teeth. If you need the hospital it must be severe.
That is like a penicillin allergy.
Hope it is better soon.
Same thing has happened to me this year and like you it put me in hospital three times. The doctors always say 'i must be allergic to something' but when i tell them i've done/eated/touched nothing different they always rule it out as a lupus this. They give me phenergan and adrenaline but that never actuallly takes the swelling away. It usually goes on it's own time.
I have no idea, but i hope it gets better for you. My tongue has managed to stay angioedema free for 2 months now. xx
Hi everyone
I am like Geneva 2. I had those marks on my tongue too It was aggrevatingI would keep my teeth closed so I wouldn't bite my tongue.
Denised3 I can;t take nsaids or ibuprofin aspirin so that wasn't my problem,
Cindy
Hi, I had this one time this last summer. It was only my lips that swelled, thank goodness. The tongue would be terrifying. I went to an urgent care after hours and the Dr looked my medicine list over and said it was my blood pressure medicine, lisinopril causing it. He put me on 50mg of prednisone for 5 days and gave me a steroid shot. He said to stop taking that medicine aand I haven't had a problem since.
wendy xx
I had angioedema three times but because i developed an allergy suddenly to sulpha antibiotics before i was diagnosed with lupus. I would record everything you eat,drink, take and touch including where you go everyday. Its an autoimmune response to a trigger without a doubt. Could it be you were not exposed to a new thing but you might have developed a new allergy like i did with lupus?
Hi everyone
Guess what? Today my tongue decided to swell, I'm not on antibiotics or blood pressure meds, and I can't take nsaids.
My guess is its the lupus. I have' had the tongue issue in well over a year??????
Cindy
I had tongue swelling 6 times in 2 weeks resulting in hospitalizations about 2 months ago. At the same time my PCP was telling me she thought I had an autoimmune disorder, prob lupus, but she wasn’t sure. Coincidence? I don’t know. They attributed to an injection I received of lupron which is for a different autoimmune I have, endometriosis. They put me on regiment of antihistamines 6 times a day but it was still happening. Benadryl around the clock which made me sleep all day and unable to take care of my 4 & 5 year old boys. I have stopped taking all the meds and don’t feel a difference??? I had ANA titer which was negative but my doc said all the prednisone I was on for angioedema, 40 mg twice a day would make it false negative…also from everything I’ve been reading often times it is negative. I have all of the classic symptoms and still nothing. This post has kind of re-sparked my need to figure this out. If anyone has any advice please let me know…I’m in Orlando area if anyone knows a good rheumy…Thank u
OC GAL said:
I've had angioedema & swelling of my tongue in the past. It usually happens when I try to reduce Prednisone. I have an epi-pen & I take Benedryl. Lupus can cause this & I had it for a yr before being diagnosed. I also had severe hives. Tagamet is also good. I've been to the ER & had IV Tagamet that takes the symptoms away quickly. The symptoms are very distressing, hope this helps. I also went to allergists who weren't very helpful. I was tested for allergies but had none. You should talk to your Rheumatologist if the angioedema persists.
I just saw this post. Is that when your tongue swells up? If so I've gone through that. I now have to use liquid benadryl with some of my medications because of the side effects I have Crohn's,Lupus and RA. Hope this helps.
Hi Everyone.
I had swelling of my tongue but not to the extent that you girls have. That was about 6 years ago, the year before I was diagnosed with SLE. I don’t have them any more.I thought the plaquenil helped it.
Take care
Cindy