Hi again. I am fairly new to this autoimmune stuff and was hoping to run another question by this group. I woke up this morning with a tingly upper lip. Within 10 to 15 minutes both my lips swelled up like Donald Duck. Believe me I'd give Angelina Jolie a run for her money. Then my tongue started swelling. I went to the ER as I feared anaphylaxis!
They gave me an injection of Benadryl and steroids. They told me sometimes we can't figure out what causes it. I told them I have been suspected of having Sjogrens and asked if autoimmunity could cause it. The dr didn't think something as severe as my reaction would happen from it. Prior to this I had been waking up with hives around my eyes.
Any way what concerns me now is they sent me home with a prescription for prednisone. I am to take 20 mg two times per day for 6 days (including the dose I got in the shot this morning). There is no taper, just 40 mg for 6 days then stop. Is that dangerous to take like that I always thought steroids required a taper?
Well I see my pcp tomorrow for follow up so I will ask her but I don't have a lot of confidence in her so I wanted to run it by this very knowledgeable group. Thanks again for your time. Good thing is my lip swelling is beginning to subside with the injection. Thanks again xo
Maybe time would be well spent finding a better doctor?
Yes you are right, I have very shitty insurance so I am limited in doctors that accept it. I've called most that do I. My area and all day not taking new patients. I'm now having to look at doctors that have over an hours drive and I'm not sure I can handle that. I am still looking though :(
I go through this quandry every so often where I can't think of the name of the health condition that causes allergic reactions on face, lips, tongue, etc. Generally, it can often be controlled by taking something like Zyrtec on a daily basis. There is a new antihistamine out OTC that is called Xyzal. I have had prescription for years and it works like the benedryl and other antihistamine but doesn't cause as much sleepiness.
Also, I will add that in my area where I worked for a nurse for years and also how the doctors treat me now, the prednisone is usually given for 5 days and can be stopped. If it is given longer they usually do the taper. I am not sure where your doc gets the 6 days. I would ask your doc about these issues and see what she says. There are so many times when we have to walk quietly and carry a big stick cause we don't want to jeopardize our relationship with our doctors for many different reasons. Good luck. Irish
All of the NSAIDS can cause bleeding. It is just that we are all different and some of the meds are harder on some people than others, Bleeding is a big concern and generally people can have bleeding gastric ulcers. However, I have seen vaginal bleeding from NSAIDS whe I was working as a nurse.
Make sure to always take it with some food and try not to lie down after you take it as it can reflux up into the esophagus and cause irritation also. Anyone who is on Warfarin or any other blood thinner or aspirin on a regular basis should not be taking the NSAIDS also. This is not any doctors orders but is the rule of thumb when patients take blood thinners.Check with your doctor with any questions. Irish
Thanks Irish, I have heard of xyzal on TV, will have to try it. My PCP thinks that the cevimeline may be responsible for the swollen lip, hives reaction (angioedema)and is insisting I stop taking it. That is the only thing saving my life right now. Now I am at a loss. She scheduled me an appointment with an allergist Monday though. Does anyone know if an allergist can determine if it is the cevimeline specifically causing the allergic reaction? And can autoimmune disorders themselves cause angioedema? I started getting bumps under my eyebrows before I started taking the cevimeline so I'm not sure if that is really it. Ughhh don't know what to do now.
Hi Judes,
Your story just makes me question one thing: Why do your symptoms always appear when you wake up?
If, as you say, your problems started before starting Cevimeline, I'd consider other possibilities. Like the condition of your bedroom. Are you sure there isn't any mold or other allergens there? What about ventilation? When was it cleaned? I know those pipes can grow all sorts of things... Or bed linen, pillows, mattresses etc - you know, pillows tend to get moldy, too. Or the bed linen may contain certain chemicals you can't tolerate. Or maybe a perfume, e.g. in your night lotion?
I'm writing this, because these issues are very common but still very poorly known. I've taken ill from bad indoor air and that has resulted into multiple chemical sensitivity (MCS). So I'd suggest you investigate that, and maybe even try sleeping elsewhere for a couple of nights, without your mattress and pillows and all the normal stuff and see if the problem still persists.
I really hope you'll find answers soon. It's a crappy situation and I'm sorry for you.
Thanks for the suggestions Eija I will have to try that. I am allergic to penicillin so maybe mold is a possibility too. It has happened at times other than morning though, like at the end of the work day today while I was in the office my eyes started to swell shut :( and I am on 40 mg of prednisone so I thought it was supposed to prevent this from happening. I am getting random hives right now too:(
Oh my, Judes :( If you problem really is about mold, you're in a hurry to leave every single place with it in the air. The only "cure" for that problem is to avoid all exposure to it. That's seriously the only way to stop the downward slide. Then, when you've been without exposing yourself to it for long enough a time (for some it's years!), you MAY tolerate it in very small doses and very briefly. But seriously, find out if your workplace is healthy or not, the same with your house. When you've gone that far, things usually go rapidly worse.
The easy thing would be a lotion or detergent or something similar.
Hi. I don't know if it is mold or what is causing it. I have been running my humidifier every night even in this humid weather so I'm not sure if that could cause mold. I'm still breaking out all over in hives. Large patches just developed on my hips, upper inside arms and wrists and my eyes are swollen. I just bleached and washed everything in my bedroom and removed my humidifier and have taken no meds or supplements since yesterday noon, other than prednisone 40mg and Benadryl. And it's still happening :( I see an allergist Monday hoping I get answers. Thanks
Glad you see allergist on Monday. The sooner the better. I know that I had a rash on my leg years ago when I was on the TB meds for my mycobacterium kansasii. I called my infectious disease doc and she told me to see my family physician and get a biopsy of the lesion on my leg.
It came back with language indicating allergic or something of the sort. She did the process of elimination and took me off my Rifampin as it was notorious for causing allergies. The rash went away so that had to have been the issue.
Allergists do have a lot of knowledge that they can glean from tests plus the experience of treating people with all these weird things. Also, humidifiers are notorious for growing mold. Have to clean them weekly with vinegar and water to keep the mold down or away. Mold is everywhere and the high humidity this summer grows mold. Air conditioners can grow mold and believe it or not al allergist told me that in the winter when we have a light coating of snow and not very cold temps the patients allergic to mold really suffer. Maybe something else will show up in allergy testing. Good luck and keep us informed. Irish
Well I saw the allergist today. I am on 5th day of 40 mg prednisone and benadryl and I am still actively breaking out in hives which are moving all over my body :( ughh this is too much. He said I had dermatographic urticaria which means my skin is so reactive he said a skin test couldn't be done. I told him my history of the last couple months how I suspect sjogrens but have negative blood work. He seemed to lean towards an auto immune possibility for my hives and ordered blood work along that path. Apparantly auto immune diseases can illicit angioedema and uticaria (hives) in people :(
I found this article which specifically refers to sjogrens as being a possible cause: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651192/
Urticarial Vasculitis
Cutaneous vasculitis presenting as urticaria with or without angioedema can be seen as part of a diffuse connective tissue disorder or can be seen as a separate entity with skin as the only organ affected [32]. It differs from acute or chronic urticaria/angioedema because there is true necrosis of small blood vessels (typically venules) in the skin with petechiae and/or purpura. The hives last longer (24-48 hours). The incidence is about 1% of that of chronic urticaria or about 1/2000. On biopsy, neutrophils predominate with fragmented cells (leukocytoclastic angiitis). When there is no identifiable underlying disease, it is often designated as idiopathic leukocytoclastic angiitis. Angioedema may be seen, but urticaria predominates. Disorders to consider are systemic lupus erythematosus, cryoglobulinemia, polyarteritis nodosa, Wegener granulomatosis, and Sjogren syndrome. Treatment is directed to the underlying disorder as well as the skin manifestations. Symptoms are often refractory to antihistamines, although they should be tried first. Patients may require low-dose daily corticosteroid to control symptoms; however some patients respond to dapsone, colchicine, or hydroxychloroquine. One specific entity known as the hypocomplementemic urticarial vasculitis syndrome is characterized by a circulating IgG antibody to C1q with lowC4 and C3. The urticaria is particularly responsive to hydroxychloroquine.
Uticarial vasculitis was one of the panels he had my blood checked for. I guess I will see if this one turns up anything , so far my bloodwork has all been negative. Oh boy one thing after another I guess. Worst thing is he told me to stop all meds and supplements until I go back on Oct. 15th. Then he said we can slowly reintroduce things. That means no cevilemine. I havent had it since Friday morning and my throat is back to being sore, raspy voice, difficulty swallowing and sleeping resumes. It really makes you appreciate that drug, don't know how to gwt through this month oh boy.
Judes first I am very sorry that this is happening to you, no doubt you are miserable and maybe more than a bit concerned.
It is interesting that, if I understand correctly, your symptoms continue despite taking Prednisone. Is that correct?
As noted by someone else, we are all different. That said I had all sorts of rashes and hives when I first became ill. Now if I eat too much gluten I will develop a hive or a few, not many but they itch like the dickens.
Is there anything new in your home, e.g., paint, clothing, accessories (allergies to nickel can be terrible) or in your diet that might be the culprit?
I do tend to wonder about mold. I found that I could not run a humidifier as I would always wake up not feeling well and had sinus issues even though my husband cleaned it thoroughly.
May you find answers, and some relief, soon!
Hi yes I am on my 5th day of prednisone and hives are still erupting :( tomorrow is last dose then I am just to take Zyrtec and tagemet per the allergy doctor. I have never taken steroids before, apparantlythey don't seem to be working on me :(
Thanks for the ideas, I removed my humidifier. I am going to be buying new pillows and comforter soon too. I'm hoping they can help me figure this out soon it really is miserable.
Keep in mind that dyes in clothes, shoes and even drapes and carpets can cause allergic type issues. Our world is so full of chemicals. The autoimmune theory is also something that is very possible. I wander if IVIG would help you at all or one of the biologics or immunosuppressant drugs. Good luck. Sounds like you have a good doc. Irish
Yeah it's so frustrating thinking it could be anything in my environment and not knowing. I only had 5 new hives today, not the large clusters of them that I've had since Thursday . I'm hoping it's a good sign and that they don't get worse again now that I took my last dose of prednisone.
If it was something I ingested like a medicine I shouldn't still be getting new hives right? Seems it would be out of my system by now. Maybe environment? The reason the allergy doctor seemed concerned was my hives left behind dark purple like bruise marks. They have mostly faded now so I hope it's not the autoimmune Vasculitis hives. He did seem like he knew his stuff so that was good.
If it's my cats well I'm just gonna have to learn to live with hives cause I can not give them up ever, no way they are my babies lol. Hoping to figure it out soon, and see how tomorrow goes without the prednisone. Thanks for all your comments and ideas.