Saturday, October 29, 2016

My Day as Angelina Jolie & The Saga Continues *UPDATE*

Well my life seems to roll along like a misshapen lumpy rock.

Last week I had a flare up of my HS with an abscess in my left armpit.  I'll spare you and won't go into details or share lovely, color photographs here. ;-)

A week ago Thursday I was at the doctor's office having said abscess drained, cultured and dressed. Nothing unusual was found and I was sent on my way with an Rx for a course of Bactrim anitbiotic.

On Tuesday I went back to this doc for a follow-up on the abscess.  Everything seemed progressing in the right direction and she told me to finish out the course of Bactrim and no need to return for this issue.

Fast forward to this past Wednesday evening and after taking my evening dose of Bactrim I got a horrendous itch "down there" that led me to believe I may be developing a yeast infection.(I am also on another maintenance drug that can cause yeast infections so this wasn't a strange thing to consider.)
I took an oatmeal treatment bath in the tub which seemed to calm the itch and I went to bed.

Thursday morning I took my a.m. dose of Bactrim followed by my usual cadre of routine pills.
About an hour later my scalp started itching like a mutha and then my neck started and my left arm had what looked like a mosquito bite welt on it.
A short time later I went to pluck my eyebrows and saw that my neck was covered in red welts. WTF?

After reading a few blogs I noticed a tingling in my lower lip and saw that the middle of my lower lip was swollen.  As I sat looking into my magnifying mirror the swelling started spreading and by 10 am my entire lower lip was swollen by about double it's normal size.

I dug out some Benadryl and took a dose and waited for the swelling and welts to go down.
I also messaged the doc I had seen for the abscess and who had prescribed the antibiotic that I was possibly having a drug reaction.(Bactrim can cause hives and swelling though it's not usual.)

By 1 p.m and I hadn't heard back from the doc I made the decision to go to the local Urgent Care to be seen.

This is what my lip looked like before I left the house for the Urgent Care......

Again, WTF?!?
You can see a bit the welts on my neck in this shot too.

Up to the Doc-in-a-Box and after waiting an hour there the PA prescribed me a course of steroids.
Could be a reaction to the Bactrim so stop taking that now.  As long as my tongue and airway wasn't swelling and my vitals were normal there wasn't much more to be done there but wait and see if the Prednisone helped.

I went to Burger King to grab a small burger to eat in the car and wait for R-A to fill the Rx.
I resembled the Elephant Man trying to eat my burger.  It hurt to bite it and then finding it's way inside my mouth and then not letting food dribble out of the indentation that was the middle of my lip took real effort.

I finished the burger but R-A was taking forever to fill this script so I had to sit in the pharmacy for 15 minutes and wait with my hand over my mouth.
On the way out of the story I walked past a woman with a small child who saw my face and yelled in fright.
I felt like John Merrick from the movie in this scene......

I took the first pill of the script with some iced tea when I got home after 3 p.m.  Most of the tea ended up down my face and on my shirt but I kept enough in my mouth to swallow the pill.
I laid down to nap before 4 and waited for the drug to work.

When Hubs got home around 6 p.m. I got up, and if anything, the swelling had gotten worse 3 hours after taking the steroid.
Plus the tingling and swelling was now moving down my chin, up my cheeks and to the edges of my upper lip.
I took off my shirt to see that I had red welts all over my chest, my breasts and my stomach area. In addition, the back of my thighs and hands were now itching like a SOB!

Hubs threw me into his car and headed straight to the emergency room.
Finally got back into the ER and after asking me a bazillion + 1 questions the learned professionals "think" it is a reaction to either the Bactrim or the blood pressure med I am on, or a combination of the both.

My BP med is an ACE Enhibitor which can cause angioedema and hives in rare cases.  ACE Enhibitors can kill you if you develop a reaction to them and you continue to take them.
I guess I am one of the "lucky people" to be allergic to them. lol

ER doc can't be sure this is what caused my episode so I was referred to an allergist for testing in the future to see if the Bactrim or ACE Enhibitor caused this, or both.  For now I am off the BP med and the Bactrim.

Nurse in the ER gave me a Benadryl cocktail into my IV......well, after two tries to find a vein by two different nurses.(I am a hard stick as they say.)
Mega doses of Benadryl cocktails don't like me either it seems, as my eyes rolled back in my head and I nearly passed out on the gurney.  After laying there for about an hour I felt like my lips were improving and was well enough to get up and go home.  The IV was suppose to make me sleepy as well but I was up another 2+ hours after we got home before I could sleep. sigh.

Here's a shot of me around 11 p.m. Thursday night.  The bottom lip is almost normal size but the upper lip is still puffy.  I look like I had my lips botoxed, don't I? lolz

I don't think the Angelina Jolie look is for me......

I'd probably still scare a small child with this face.........

Obviously I'll never be mistaken for Angelina Jolie and I sure hope not to be mistaken for the Elephant Man either ever again.

As of Friday morning my lips are normal and all the welts are gone.  rah.
Awhile ago though I got another welt on the crook of my right arm and my thighs started up itching again.

*Update as of 5 am Saturday morning*

About 8pm Friday evening I started in with the intense itching and by 9pm everything besides the lip swelling started again.  I took another dose of Benadryl but it did nothing so we spent from 9:30pm to 1am back at the ER getting another IV of benadryl and prednisone(administered at 11:30pm)and the hives started disappating so I was discharged at 1am.  Got a script for Pepcid but no pharmacies open to fill it so we went home.

PA at ER said this could go on for 5 days or so if it's what they say it is.  We are on Day 3 now.

Got home and took another dose of Benadryl and went to bed by 2am.
Woke up at 4 am with crazy mad itching and can't sleep because of  it. Hives are getting worse and spreading on all previous areas and going into my armpits and back of arms too.

Daughter woke Hubs up at 5am before she left for work. Hubs is heading out now to find the 24 hour pharmacy in Dallas PA to fill the Pepcid script.

And I am sitting here trying to type between scratching.
I am so tired I can hardly see straight.

I am seeing a third trip to the ER in as many days in my near future, though they'll probably just give me more Benadryl and send me home. Sigh

Can this end now.....please?
So. over. it.

I'll check-in later today or tonight. Ugh


**Saturday 1 PM Update**

Hubs brought home the meds from the 24 hour pharmacy.  With a metropolitan sized region we live in, I find it strange that there is only ONE 24 Pharmacy around here(next one is an hour away or father if you live north or east of here), especially since hospitals no longer house 24 hour pharmacies on site.

Rx taken at 7:30 am along with another dose of Benadryl plus most of my other morning meds* and by 8:30 am I was itch-free (mostly) and heading off to bed to nap.
I did sleep until 12 pm and awoke still mostly itch-free and the welts have disappeared(mostly).
Took another dose of Benadryl at a 4 hour interval and so far, so good at an hour past taking this dosage.

The IV cocktail they gave me the first night at the ER was a combination of mega dose of Benadryl and a dose of Pepcid.  While Pepcid is usually given to treat stomach aliments(acid relief, ulcers, GERD, etc.)it is also a Histamine-2 blocker.  Hives and angioedema to some extent are caused by allergic reactions and are helped by blocking histamine releases in your body(Antihistamines).
Benadryl and other similar medications are histamine level-1 blockers.  So a combo of both blockers are often used in cases where hives just won't go away. (Of course you can also be allergic to Pepcid or the other meds labeled as histamine-2 blockers so this Pepcid may have made the problem worse, but luckily I am not, and it did not.)

I spent this morning between scratching myself and waiting on Hubs to return with the script googling Hives(Urticaria)in all it's forms.  Yikes.  If it doesn't go away it could become a chronic case lasting for basically the rest of my I had to stop looking!  No information can be a bad thing but a little information can be dangerous.
I'll take this one 4 hour segment at a time for now.

* While googling Hives however, I did read that a maintenance drug the specialist put me on in late August after my referral "has been documented to induce allergic Urticaria".
At my follow-up appt. with this specialist this past Monday it was discussed taking me off of this one med I started in late August since it was only a minimal dosage(1 mg)and the condition I was prescribed it for seems to be improving and he doesn't feel I "need" to be on it and said I'd probably be taken off of that soon.

So I made the executive decision(along with my gut feeling)to stop that script as of this morning.
I'll contact this doctor and explain what I am doing and why, especially if the combination of taking the 2 different histamine blockers along with discontinuing three drugs now(Bactrim, the BP med and this new drug in my regime)keeps me hive and angioedema free and doesn't cause me even worse symptons, until I hear back from his office.

It's possible that the first outbreak on Thursday was both angioedema and hives but when the swelling of tissues(lips)didn't come back on Friday, that could just be hives(or not).  Which drugs caused what could be complicated or changing, but I will not take them for now until we get definitive proof which one(s)are the culprit.

I will be making an appointment asap with my primary doctor too to go over all this and get his input, as well as push for an allergist appointment on three drugs that seem to be the likely candidates for causing these outbreaks.  If none of the 3 medications come up as the culprits we go back to square one in looking for a medicinal cause with the allergist.  At which point, this could take a very long time to discover what the trigger(s) were and this will be my new medical hell.

So we still don't know why this is happening other than I am allergic to something.  Between the various docs and PAs I've seen since Thursday and knowing my own body and environment at home, we have ruled out environmental causes(not due to laundry detergent used on clothing, a difference in my surroundings in the last week), animal or bug infection/bites, a food allergy, cold-induced, warmth-induced, solar-induced, so we are left with drug-induced Allergic Urticaria or Idiopathic Urticaria caused by stress which leads to a break down of the Autoimmune system, and can result in developing autoimmune thyroiditis, celiac disease(in which case food will be involved), rheumatoid arthritis, Sjorgren's syndrome or systemic lupus erythematosus. (Type 1 diabetes is also among the outcomes but I can't develop that at this time in my life.)

So that's it from here for now.  I see many oatmeal treatment baths in my near future and luckily for me I have A LOT of rolled oats on hand to pulverize into oatmeal dust for it(and I got it really cheap by buying it at rock bottom price.....see what I just did there?....worked in a frugality thing in this medical update? ;-) ).
Fingers crossing I can get through today without another outbreak and trip to my regular gurney up to the ER. I have to, merely for the fact that they have run out of good veins to use to put an IV into because due to my disappearing veins and their crookedness I am a very "hard stick".

Though there was some excitement last night when 6 cops showed up with a belligerent man in handcuffs to get his blood drawn for a DUI charge I'd rather stay home and find other entertainment.

The bright side of all this?

I am still alive(knock on wood)and our healthcare insurance is "good"(not great but at least good)and we have now maxed out on our Maximum Deductibles OOP we are required to pay/co-pay for(all medical treatment accept RXs).  Umm, I think we hit the ceiling for out of pocket medical sometime between the Urgent Care and the 1st ER trip.  Everything medical from then until Dec. 31st will be no OOP so I'll want to get this allergy consult, etc. on the books before Jan.1st.  If this saga drags on into 2017 we'll probably max out our OOP next year too, given that 3 of the 4 people under our policy are frequent flyers now due to various health conditions. bleh.

I'm off to find something to eat now.
Thanks for all the well wishers in the comments.  It does help a bit getting some positive vibes(or dare I say blog love?). 8-P



  1. You do NOT look like the elephant man. You look like a woman with an allergic reaction. So sorry this happened to you. I hope you feel better over the weekend. I like your blog and your hysterical comments.
    Barb in PA also

  2. Holy sh!tballs! That's so scary! I hope it subsides quickly and you get relief soon!

  3. So sorry Sluggy. I hope they can do something soon to nelp.

  4. Sluggy,

    Well, aren't the doctors supposed to cure us, not turn out lives into horror shows. I hope you don't get it back either, just as I hope I get no more C. Diff after three attacks, also doctor caused.


  5. OMG, that is very serious. Glad you went to the ER. I hope everything calms down today. had you had Bactrim before?? Take Care!

  6. Oh Sluggy! I am so sorry that you are going thru this nightmare! Yup, classic allergic signs. Sigh . . be well!

  7. OMG I feel for you! You poor thing. I sometimes wonder if all the medications and pills they give us are worse than what we had in the first place. I hope they figure it out and it goes away fast. Take care.

  8. I am so sorry. My dh gets welts from citric acid, citrus, and penicillin so I know just how bad this can be. I wonder with your bad reaction you'll need a eip-pen? Hope you feel better soon. Cheryl

  9. Lord have mercy! I have severe skin problems and get lots of rashes. The itching often keeps me from sleeping. But the lip! I've never gone through that. You are in my prayers.


  10. Hives are miserable. I get allergy shots now after spending two weeks out of August covered head to toe in hives - for two summers in a row. I maxed out the dosage of steroids that you can be given (and types) in the first several days and they never knocked it back more than a couple of hours. Those were a long two weeks with little to no sleep - so you certainly get my sympathy. I hope that they start to subside and STAY gone soon and that the allergist can get you in quickly and figures it out for you. I'm sorry you're dealing with this, I know you're miserable. Hugs.

  11. Oh wow! So sorry! What is the HS you referred to as an ongoing medical condition? Both my daughters are allergic to sulfa drugs- youngest had hives all over and prolific vomiting but thankfully, she has never experienced that again. You keep a pretty good food diary so I'd continue and there are lots of different drugs for hypertension. Hang in there.

  12. Wow, hope things are better now and you can get some rest.
    Sorry that you had such a hard time, Janie

  13. I am so sorry. Our middle daughter did this and as on that regimes for about 2 weeks but did not fully recover for about 6 months. I know you don't want to hear that. Take care. I will come out and nurse you if you need me to.

  14. This is what I have been going through all my life. Sometimes, I had hives covering my torso, arms and legs by the time I was seven or eight. When I was twelve, I had lips like yours but only on one side and up next to my nose. Eating was difficult. I wasat camp and no one would call my mother for me.

    When your lip swells even a bit, you are in grave danger of angioedema. And, even if you have never been allergic to a thing, overnight you can develop and allergy.

    Whole wheat was giving me hives, but I did not know it and had welts all over and itching that was so extreme. Before, I had minor itching and the occasional welt. But, my always present sensitivity to wheat just blew up.

    When I read the dire warnings about the drugs, I have to just stop!

    My gastroenterologist and allergist saved my life and my mind. Once I got treatment and quit eating certain things, my mind set and body improved.

    Hopefully, you don't have more trips to the ER. I suppose you are exchanging Christmas cards with them by now.

  15. I hope the hives go away soon-I had a nasty case of giant hives that lasted for 6 months-Yuck! I would be at work and my lips would swell up, or my eyes would swell shut. It was a nightmare! I could write my name on my arm and hives would pop up. I hope they find out what is causing this. It is a miserable condition.

  16. Oh man. So sorry you are dealing with all of that. Hope you get some relief from the meds and can get all this figured out sooner rather than later.

  17. My goodness, you have really been through an ordeal! You seem to have an unusual ability to grasp the medical aspects of the situation. Hope you are through the worst of it.

  18. Thanks for updating. I'll continue sending positive thoughts and well wishes.

  19. Sluggy - genuinely hope you are feeling better and that an answer can be (quickly) found as to what's causing or caused this. Having had a similar reaction several times after eating (turned out the link was cheap red wine used to prepare the food), including the ER visits, I truly empathize.

    One possibly helpful tip: Instead of adding the oatmeal to your bath, instead fill a white sock with oatmeal, tie off the end, immerse it to wet the oatmeal, and then gently rub that on over the affected areas. It has the same effect as a bath, but's far less messy.

    Thinking all sorts of good thoughts for you!

  20. you are in my thoughts and prayers, I hope you are better very soon.

  21. Hope you are feeling better. Random reader for years, enjoy your blog! I never comment but wanted to share. I am allergic to sulfa drugs. Had very similar symptoms as you except I also passed out. The ER sent me home not knowing what caused it. A couple years later I end up back in ER. That Doc knew right away. It gets worse each time and next one could have killed me. I was able the breath okay too. Took sulfa drugs whole life and bam body rejected in my mid twenties. Maybe look into that or never take again to be safe. Best, Steph


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