Connect
Adverse drug reactions; How important is a diagnosis?
Like many of you, I have had a long and confusing set of symptoms that were so unusual that doctors didn't seem to know what to make of it (an immunology specialist as well as a GP). I will attempt to keep my story and questions succinct:
The part that is clear: I had an adverse reaction to acetaminophen (=Tylenol, paracetamol, APAP) which resulted in a few patches (5 macules, 2 cm or less) on my normal skin (leg, hands), but mostly characterized (and most worrisome) by blistering: first on the palm of my hand (6 target spots, 1-1.5 cm, 3 became blood blisters within 24 hrs), the thin "skin" on my penis including part of the glans, and eventually (the second time, a month later, which is how I now know what caused it) blisters and erosions on my hard palate, and sores on my lips that felt like severe burns. The blisters on my penis and hard palate were larger (2cm or more) fluid-filled sacs (not taut) that burst within 24 hrs and left very raw underlying tissue exposed.
Earlier in the year/last winter, I had a few strange and unexplained health issues (three bouts of flu-like symptoms lasting 10 days each 1 month apart, Jan-Mar 2018); C-reactive protein was high; blood work and liver function were "off"/"unusual", but not indicative of anything specific; infections came back neg (flu, mono, heps A-C, HIV, blood and urine cultures). Not sure if that is related or a precursor to what happened more recently (Nov and Dec 2018) which was clearly an adverse drug reaction within 24 hours. In Nov, I got in to see immunology specialist on day 5 and started treatment (20 mg prednisone start, step down after 2 days) which resolved completely within 2 weeks. In Dec, did not get in to see PC for 7 days (weekend, New Year's), didn't start treatment for 10 days (50 mg prednisone, step down 10 mg each week for 5 weeks).
Yes, in retrospect, I know I should have gone to the ER, but because my vitals were normal, and I didn't know what was going on or how bad it was going to get, I figured they'd just tell me to go see my PC or dermatology. I also kept hope that by stopping the offending drug, the symptoms would get better on their own - which they did not. I'm now on week 3 of decreasing prednisone, and the symptoms have resolved for the most part, albeit more slowly this time. I have a follow up next week with dermatology and I want to be prepared.
Preliminary diagnosis is lichen planus (GP after consulting with dermatology), but from what I've learned, that does not seem like the best match. Other conditions which seem to be more of a match are erythema multiforme and/or Stevens-Johnson Syndrome. It's hard because a lot of these conditions seem to have generalized symptoms that are 50-75% present with "x" but some patients have no sign of symptom "x" and none of these conditions seem to be characterized by 100% present with "x". I don't want to get into a disagreement with my doctor - and I don't really know how important it is, given that the treatment seems to be the same no matter what it's called. I also understand that they went to medical school and I did not; but I also understand that they see many patients every day, day after day, and have 15 min to maybe an hour to focus on my health condition, but I have/had hours, days and weeks to try and figure out what the heck is/was going on with me and my body.
I can discuss my concern about my personal health (liver function, scarring, increased risk of cancer due to reaction) with my doctor, but what I'm trying to wrap my head around here is how important is the label? And do adverse drug reactions (ADR), severe cutaneous adverse reactions (SCAR), etc, get coupled with a second diagnosis of lichen plans, erythema multiforme, SJS, depending on how the reaction manifests through the skin (and/or internal organs)?
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Hello @wmky, welcome to Connect. I'm not sure I would worry about getting into a disagreement with a doctor when you are asking questions and trying to learn more about your possible health conditions. It's good to ask questions and be your own advocate. I have no medical background or training but it sounds like you may have some really valid concerns and I would think your doctor would want to answer any questions you may have.
Since symptoms of some other disorders related to one of your symptoms, Erythema Multiforme can be quite similar, I encourage you to read these discussions on Connect; please feel free to post your message in these conversations as well:
– Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
– chronic erythema nodosum https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum-1/
I'm also tagging @alexahercamp @esfourplus @kgjd97 @sebley12 @elizamail @sgerard @kimmy63 @jillianm @jgodby10 @freemary @beff2468 @travelgirl ; as they might be able to offer some more insights and information.
@wmky have you thought about getting a second opinion or seeing a specialist?
-
Like -
Helpful -
Hug
2 ReactionsThe first specialist I got in to see in November was an immunologist I had seen earlier in the year to consult about the recurrent fevers/flu-like episodes last winter. I tried him first because the rash outbreak clearly seemed to be some sort of auto-immune/auto-inflammatory response, but he had no clue about what was going on with the rash and said if the prednisone didn't clear it up, I should go see dermatology. He did run some tests which came back negative (for the type of things he would look for): Rheumatoid factor
-
Like -
Helpful -
Hug
2 ReactionsOk, this forum seems to be limiting the amount of text I can post, but doesn't mention a character limit. I have an appt with dermatology next week, even though things have mostly resolved.
Is there a field/doctor that specializes in adverse drug reactions? Is there a specialty that I may be overlooking that I should advocate for myself and insist upon consulting, such as hepatology?
-
Like -
Helpful -
Hug
2 Reactions@wmky Mayo Clinic has some information drug allergy that may be helpful. I think the kind of doctor specialty is Allergist-Immunologist.
Drug Allergy - DIagnosis and Treatment
-- https://www.mayoclinic.org/diseases-conditions/drug-allergy/diagnosis-treatment/drc-20371839
-
Like -
Helpful -
Hug
1 ReactionHi @wmky, I'm not aware of any limit for the amount of text you can post. Can you provide a few more details of what happened?
-
Like -
Helpful -
Hug
2 ReactionsHi @wmky, there is no character limit for posting messages to Connect. If you continue to have technical issues, please send me a message using this form. I’ll help you get to the bottom of the issue.
https://connect.mayoclinic.org/contact-a-community-moderator/
-
Like -
Helpful -
Hug
2 ReactionsYou might try an allergist? And don’t be afraid to bring up your thoughts with doctor. Yes they have a medical degree, and yes they see hundreds of patients, but they don’t necessarily see patients just like you. You are the authority on you, and you probably know more about the potential for various diagnoses then he might. Any doctor who’s going to be irritated if you bring up a thought isn’t a doctor worth seeing again. Good luck to you
-
Like -
Helpful -
Hug
3 ReactionsI am being worked up for autoimmune of the biliary / hepatic system called PBS I have fatty liver and I am very distressed over this ; I am a moderate drinker and eat a healthy diet ,I am about 10-15 pounds overweight , however during holidays and special ocassions I binge but get back on track after these episodes , I am wondering if someone on mayo connect could help me find a group to discuss this with ?
Thanks
Lisa
-
Like -
Helpful -
Hug
2 ReactionsHi Lisa @soteloli -- I responded to your question in your other post with the same information.
...Thanks for the kind words. I just use the search function at the top of any Connect window (small magnifying glass) to find posts and discussions using a term. I did a search for fatty liver and found one discussion with no responses. You may want to post questions in this discussion where you will meet @liaquat who started the discussion and shares some of your symptoms:
Groups > Digestive Health > fatty liver and gall stone
— https://connect.mayoclinic.org/discussion/fatty-liver-and-gall-stone/
Mayo Clinic does have some information here that maybe helpful – Nonalcoholic fatty liver disease:
— https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
FYI – help for finding information on Connect
Groups > Just Want to Talk > Search – It can help you!
— https://connect.mayoclinic.org/discussion/search-it-can-help-you/
-
Like -
Helpful -
Hug
1 Reaction@wmky I have had bad reactions to medication before and so have my children.
Do you have allergies to anything? I have allergies to all kinds of things, and obviously the medicine I was given was one of them.
Like you I didn't go to the hospital I just started taking Benadryl, and that helped me. But it lasted like 10 days just like you said. i took Benadryl every 2 hours for a week.I developed a rash all over my body and every red bump that appeared felt like pins under my skin. Benadryl helped, but I probably should of seen a Dr.
Honestly the way I was feeling from the drug reaction.The last place I wanted be around was a Dr or hospital. I was just not in the mood. I was beyond miserable.
Now I did hear from people that what took place was not normal and something else was going in my body. I should see Internist Dr to get checked out.
I happen to have H- Plyori diagnosed a few months later.
I would recommend getting a second opinion from a couple more doctors.
Wishing you the Best
Jackie
-
Like -
Helpful -
Hug
1 Reaction