Although I was initially diagnosed with PMR & GCA in 2017, I received another tag of SLE in 2018. Since then I have experienced increasingly more frequent episodes of angioedema, ranging from lip to mouth, tongue and throat swelling. The attacks are occurring more and more frequently and I am attempting control with Prednisone while trying to determine the trigger. Hence my dosage is up and down, from high of 75mg and lowest reached is 9mg. Whenever I feel I am making progress with the decreased dosage, I am hit with anything from complications of cataract surgery (Paracentral Acute Middle Maculopathy), to varying degrees of Lupus flares along with the angioedema.
My Rheumatologist says to get the Pred down. Immunologist says to increase to 50mg whenever I have mouth swelling and to get to ER immediately (I had to be intubated/ventilated on one occasion). I am managing to avoid the ER by just taking the high dose but I wonder how quickly a decrease our many experts on this site would advise in my current situation? I suspect that I have been decreasing too quickly over the past three months. Angioedema/muscle joint pain and swelling has resulted in spikes from my lowest dose of 9.5 to 75mg. Early March I was on 17.5 and I gradually dropped to 12mg. Over several days the above symptoms manifest with major throat swelling so up to 37mg last Saturday and 50mg Sunday; symptoms were resolving so I split the 25mg dose on Monday and am wondering what I should do today? My thinking is maybe 17.5 today and gradually decrease with fortnightly or monthly drops of 2.5mg until I reach 10mg? I will be talking with my GP later today (I am in Australia) but any advice from you wonderful people would be much appreciated.
I hope and pray that you keep safe in these crazy times. The Queen said it all!
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7Angie3
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Do you know for how long you need the high dose to manage the flare problem?
If up to 10 days is enough, you can drop to your previous dose very quickly. For example, if you are at 10mg on a long term basis and need the high dose, you could take it for 5-7 days and just drop back to 10mg without tapering.
I'm assuming the 10mg (or thereabouts) manages your PMR/GCA ongoing?
Thank you...you are amazing, there when we need you😊!
I don’t think that the recent 12mg dose was controlling symptoms, therefore I wonder about a higher dose for a longer period. Maybe drop to 15 and see how I go?
You ever try antihistamines? I get swelling a lot with lupus esp of the face, neck and sometimes whole body.
I’ve found that it was never there while on steroids. But when I tried to come off, I blow up like a balloon. Opposite of what is suppose to happen...right. Roids are suppose to fatten you up. Ive now been off for a year.
I take fexofenadine twice a day and this has really helped with swelling and rashes. Maybe something to try. The only trigger I know for me is rice, most types of alcohol and anything high in tannins. Montelukast/Singulair can also help but more beneficial in those with MCAS and needs to be prescribed by doc.
Hope there is some helpful info there. Hope you feel better soon! ❤️
Thank you for response. I have only tried claratyne but no response to it. I have been gluten free and off rice for years...was off alcohol (white wine) for couple of years but maybe??? as I reintroduced recently...good idea to cease again. I was having attacks when I was alcohol free but not as frequently. Immunologist thought salicylates were the problem...I’ve been thru’ elimination diet but concluded NO. I am continuing to work on diet (vegetarian with wild salmon occasionally). I have not put on weight but do have the “Pred face”😡!
Yeah. Gotta be honest. There are no specific triggers for people with lupus. It just happens. Some people have a protein deficiency (c1 esterase) but it’s rare. Some foods make it harder to control. I also thought about salicyaltes but it doesn’t correlate at all since I take aspirin daily. My immunologist is the one who said I could take up to 4 fexofenadine per day for facial swelling as “reactions”. Dermatologist said same for rashes. I settled on 2 per day for now. Fexofenadine has the least amount of side effects when compared to cetirizine (Zyrtec) and loratadine (Claritin). No sedation, dry mouth, dry eyes. When I get really bad (so swollen I can’t fit into clothes), I take 50 mg of Benadryl. Steroids help but once I go on them, they are addictive. They are really hard to go off of for me. I feel you on the moon face. Times are bad when this is a persistent look. Sending hugs your way.
Thanks...I had all the checks and balances done while I was hospitalised for 2 months 18 months ago...could not determine cause. However at least Lupus was identified after I contracted InfluenzaA, while hospitalised, and underwent pleural drainage...Lupus cells found in lungs. Such a mysterious disease!!
Only when decreasing was done very gradually over years did it work for me. Doctors that tried to decrease even over months, always had to push back up again.... (this assumes large doses for a long time before starting to decrease). I have gone from 100mg to nothing very quickly when I wasn't on the high dose long. You really need to work very carefully with your doctor on how you do this, in my opinion.
Don’t drop too quickly or you will experience adrenal failure. Try to come down gradually. Prednisone just stops body responses to its reactions , but do much damage if too high too long. Gods speed Darlin
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