Help - Angioedema Reaction to Antiobiotics - may need to go to ER for antiobiotic IV

[Luther Blissett]

That's good news Jennifer

These Red Panda look like they absorb water well

 

[Comet]

So relieved to hear this. Hope you keep healing.

 

[Gingergrrl]

Thanks for everyone in the thread too, I see my twin brought nerdy along, brings back memories.

Agreed and I was thinking the same thing

Thank you everyone for your support and caring!! The doctor also wasn't sure about the markings and how they measured it. (Too tired to elaborate more.) She thought I could continue on my cream if the size didn't become bigger or I didn't have any other symptoms. I was elated. It's still a wait and see. I'm just thrilled for this moment.

Jen, so did you end up going back to your regular doctor or seeing someone else? Whatever you did, I am thrilled to read that you did not need to go to the ER and it sounds like the Mupricon cream is working! Great news.

I told her I couldn't wait to go home and tell my friends (all of you) cause they are worried about me. You don't know how much you all mean to me. Opps, tears are coming again from thinking of everyone here. I don't want them to get in the medicine on my cheek.

Yes, absolutely, you have many friends on here who care about you very much... But please don't cry and mess up the medication LOL

These Red Panda look like they absorb water well

Great picture of the red pandas! Very cute.

 

[Alvin2]

I'm so sorry i just came across this thread, sending you good wishes

 

[Jennifer J]

Thanks @Luther Blissett! Love the red pandas, also it's great to look at the snow during our hot and humid summer. It helps.

Good news when I woke up to put my medicine on. It's the same size but less red! Yay, more encouragement.

Thank you again everyone. I have a tissue under my left eye to stop the tears again. I'm so moved by everyone. Thank you!

 

[antherder]

Very glad to hear that @Jennifer J, hopefully the worst is over.

 

[Mary]

@Jennifer J - very glad also to hear you are doing better! Whew!

And @Luther Blissett, I love the red pandas - they are adorable! Animals are great

 

[Gingergrrl]

@Jennifer J How are you doing today? How is the angiodema?

 

[Comet]

@Jennifer J How are you doing today? How is the angiodema?

Just came to check on the same thing.

 

[Jennifer J]

Oh, sorry, thanks @Gingergrrl (edit: and @Comet). I ought to have posted sooner, been rather sleepy and slow today, and trying to track down an Rx I need without certain inactive ingredients. Ha. You know how that goes!

It looks like it's still on the mend! Hopefully, hopefully it will continue. Cautiously optimistic.

Curious, @Gingergrrl can you do any antibiotics at all? I remember last year your infection and mupricon episode, it was right after mine. Can you refresh my memory what you would have had to do if it didn't work or point me to the thread so you don't have to relive it?

I'm going to need to see a specialist and see what can be done about this cause the reality is I'm most likely, no matter how careful I am, going to need an antibiotic at some point in my life especially with my health and if I live to be older.

I'm really putting a lot of hope on oxymatrine turning this around for me. That is still a ways off in the future for several reasons.

Interesting I found out a few years ago my grandma was allergic to antibiotics. She didn't have ME/CFS and I know she took a lot of other prescriptions. I don't know if she had angioedema. I'll have to see if anyone knows more. Hopefully this isn't a genetic thing, unless it's one that can be corrected somehow.

My angioedema is its usual constant daily thing, except last night was worst, but that was due to eating something which I now can add to the list of can't.

Find somebody to change your bed sheets. There must be somevody in the neighborhood who can do that.

@lansbergen, thanks. You would think. Been trying for over a decade. I know several with ME or with other medical or mental conditions or older age face the same.

I've asked at least 6 people in the past 1/2 year to see if they could help me a little with something. No luck. They see a friendly person, for the most part I don't look sick. May look unkept but not sick. I can walk and talk when they see me. Hard for them to imagine or understand I will be flat on my back shortly unable to move and was most likely that or napping before they saw me, definitely was bed bound.

It's also not just changing the sheets. My other ones are dirty, too! Need clean ones.:/

@Mary and @luther, yes, seeing animals brings lots of joy!

Thanks everyone for checking on me, for caring (I care about you too), and for being pleased with me!

Edit: grammatical and added to last line.

 

[Gingergrrl]

@Jennifer J I am going to look for my records and find that old thread so I can answer your questions re: my Mupricon episode and antibiotics. I saw my dermatologist at the time and the staph infection was behind my ear and was not angiodema.

I'd taken Decadron (steroid) at the time due to extreme headache from IVIG being infused too fast and the steroid caused several horrible side effects including the staph infection behind my ear. I never took Decadron again and never needed to once we drastically lowered my infusion speed for IVIG.

Luckily the Mupricon cream 4x per day got rid of the infection and it never spread. But I will find my records to see which ABX the dermatologist wanted me to take b/c I cannot remember and I think it was one that I had never tried before.

I am allergic to penicillin class and had neurotoxic reaction to fluoroquinolone, Levaquin. I have not taken an antibiotic since Levaquin reaction in 2010 (over 7 yrs ago and pre-MCAS) so I really do not know what I might be allergic to now!

Will be back later w/more info...

 

[Gingergrrl]

Hi Jen, sorry it took me so long to find the info for you! I couldn't find the notes that I had taken from the actual dermatology appt but I did find the thread on PR and the antibiotic that she had wanted me to try if the Mupricon cream did not work was Doxycycline. I've never taken it before and since the cream ended up working, I never tried it so I have no idea how I might have reacted.

At the time, I also spoke to a friend and he had taken Tinadazole or "Tindamax" for a similar staph infection along with Mupricon cream and it worked well for him. He said it is the only antibiotic that he is not allergic to. I also have never tried that one so I have no idea how I might react.

I do remember at the time that my dermatologist said if the Mupricon cream did not work that she wanted to speak with my MCAS doctor before giving me an antibiotic. But since it worked, she never spoke to him. So if I ever needed to take an oral antibiotic, I am also in the same boat with you since the Penicillin class is out, which rules out the Cephalosporin class to be safe, and I cannot take Fluoroquinolones.

I guess in retrospect, I would have tried the Doxy or the Tindamax (and pre-medicated with MCAS meds first) and just hoped for the best! Not sure if this is helpful and wish I could tell you more.

 

[lansbergen]

@lansbergen, thanks. You would think. Been trying for over a decade. I know several with ME or with other medical or mental conditions or older age face the same.

If you have the money you can hire somebody to clean the house forinstance once a month and then that person probably would be willing to change the bedlinnen and some other small things that must be done more frequent.

Does not have to be very expensive. In my country you can find them for 10 euro per hour.

 

[Mary]

@Jennifer J - have you looked into California's IHSS program? You have to be either over 65 or disabled, and also qualify for Medi-Cal. See http://www.cdss.ca.gov/In-Home-Supportive-Services

 

[Jennifer J]

Thank you @Gingergrrl, and @lansbergen and @Mary! I'll write more later.

Update on my infection, looks mostly the same as yesterday, parts of it is crusty. I'm taking that as a good sign.

 

[Jennifer J]

Oh, @Gingergrrl, you've been very helpful and you didn't take long at all! Thank you!! I went to bed thinking of what you wrote and woke up for my medicine dose and while my words were coming together jotted it down for you. I want to respond more to you. I just became caught up responding to a couple of other posts here. I'll respond to yours later.

Edit: Please anyone reading skip the rest if you like. I'm tired, and too tired now to shorten it. Would have been good to do a couple of sentences but I went on with details why things don't work in my situation.

Thanks, @lansbergen, I appreciate it. The "if you have" seems to be a thing for a lot of things one can do to make things easier.:/ It's a good idea though, and can be helpful for others too, if they have the money. I don't. Yet a very nice person () has offered to help with this (money to have someone wash my sheets), so I may.

I'm stuck in a complicated living situation full of the politics and building rules. And the setup of where I'm located in the building and my limitations makes it even harder. I've posted about this elsewhere, I'll spare you all the details.

There is also deteriorating asbestos (I had it tested a few years ago) on my side of the building.

I have ideas of how to make this work without bringing in someone from outside the building but it will take some doing. (I just wouldn't feel right with the extent of asbestos deterioration exposing someone from outside the building to come into my side of the building.)

My ideas are to either find someone in the building I can pay and make up an excuse like I have a hurt whatever (to not cause more problems for me here) or find someone outside that has a private washer and dryer that doesn't use scented stuff (or has animals) and get my laundry out of the building for them to wash elsewhere.

Thanks, @Mary. Hopefully it will work for someone else reading this or I'll have a new home someday, then I won't have these issues.

For the above and more I couldn't do IHSS. I did have them for a little while before I realized the asbestos situation was what it is.

The reality was, it was hard to manage all IHSS requirements especially in my living situation, it took so much out of me. Workers are nervous to work around things cause they attended orientations that threatened felony charges for the littlest thing they did different than authorized. Then you risk that they may tell on you and the consequences from that. I've met people who just don't get it and would tell (it's hard to tell where some people stand at first until you know them better or receive a letter/email or comment from them.)

The IHSS social workers were not flexible at all, even to help me have some cooked food - very rigid rules. They wouldn't allow food to be cooked because the kitchen isn't in my own personal living space - it's shared on the other side of the building. So crazy cause if I lived with roommates in a house or apt they would authorize it even though the kitchen isn't in my private space! (I wouldn't have anyone cook in the kitchen here anyways, I'd want to work around it elsewhere, kitchen is too dirty, too many cockroaches and more.)

Gosh you'd think I lived in a very dilapidated building, the cover is nicer than what's in parts inside.

Also, I couldn't find good help either and people needed me to pay an addition to their $10.50 an hour (which I would if I could).

Oh, I went on.:/ Sometimes when I write, I hope someone in the system would read these things and realize these changes need to be made, try to do something about it and at the very least become more flexible so they can truly help those who need help.

Such is life, as we do, I keep trying to turn it around, find a way to make it better for myself (and others), try to help things change, and make the best of it.

Thank you everyone for your input and ideas. I appreciate it. What doesn't work for me right now, may work for someone else.

 

[Gingergrrl]

Oh, @Gingergrrl, you've been very helpful and you didn't take long at all! Thank you!! I went to bed thinking of what you wrote and woke up for my medicine dose and while my words were coming together jotted it down for you. I want to respond more to you. I just became caught up responding to a couple of other posts here. I'll respond to yours later.

No worries and take your time! Glad that your infection/angiodema is improving and that is great news.

 

[Jennifer J]

I'd taken Decadron (steroid) at the time due to extreme headache from IVIG being infused too fast and the steroid caused several horrible side effects including the staph infection behind my ear. I never took Decadron again and never needed to once we drastically lowered my infusion speed for IVIG.

What I just wrote isn't coming out as well as I like. I have a sticky brain today. :/

@Gingergrrl, you have been (and going) through so much. My heart and mind feels for all that you and others have to go through and endure. I hope you continue to have more improvements, and even more than improvements of course , with your treatments. (We feel each others struggles here and each person's success gives much hope to all.) I'm rooting for you and everyone!

Thank you for looking up the information for me.

I briefly looked up Tinadazole. It's first sentence said: It can treat infections caused by tiny, one-celled animals , then it clarified (protozoa). I'll have to read more about all you wrote and check out Ketoflin (?sp). There's information I want to read about antibiotic allergies on the internet and see a specialist, too, to see what may be able to be done until hopefully I can turn this reaction to things around.

Update on the infection, it is still bigger than I like right now, it's less red though. I have been having the chills but I'm thinking and hoping it's more to do with the fluctuations in humidity here and I'm crashing from the effort and adrenaline of the past week. I think the infection is slowly going away, yay. Fingers crossed. Thank you everyone for helping me through this.

 

[Gingergrrl]

@Gingergrrl, you have been (and going) through so much. My heart and mind feels for all that you and others have to go through and endure. I hope you continue to have more improvements, and even more than improvements of course , with your treatments. (We feel each others struggles here and each person's success gives much hope to all.) I'm rooting for you and everyone!

Thank you so much and that is so sweet of you. I was struck by how much you have had to suffer lately and how you endure it with such grace and kindness. If there is anyway that I can help just let me know.

I briefly looked up Tinadazole... I'll have to read more about all you wrote and check out Ketoflin (?sp).

My dermatologist at the time recommended Doxycyline (which I did not end up needing to try b/c he Mupircon cream worked on it's own). A friend, back at that time, told me that he had a similar staph infection and that Tinadazole is the only antibiotic that he is not allergic to, so I thought it might be another option if I was allergic to the Doxy. But luckily, in my case, the ABX did not turn out to be necessary, so I never tried either one.

As far as Ketotefin (which I think it what you quoting above?), I have taken it for approx two years for MCAS and can give you feedback on that one if you ever need it. Just let me know.

Update on the infection, it is still bigger than I like right now, it's less red though. I have been having the chills but I'm thinking and hoping it's more to do with the fluctuations in humidity here and I'm crashing from the effort and adrenaline of the past week. I think the infection is slowly going away, yay. Fingers crossed. Thank you everyone for helping me through this.

I wanted to clarify, did your doctor say that what you have is angiodema (due to allergic cause) or staph infection (or both)? For some reason, I am confused now! If it is still big and you are having chills, it concerns me that you might need to get it looked at again (even though I know what a pain in the arse this is and I would not want to go back to the doctor either if I were in your shoes)!

In my case, the Mupiricon cream 4x/day was enough and when I went back to the dermatologist for follow-up, she said the staph infection was gone. It was painful, at that time, so I could not lie on that side of my face on pillow for a few days but I never had any chills from it.

 

[Little Bluestem]

There is also deteriorating asbestos (I had it tested a few years ago) on my side of the building.

I think this is illegal. I know you have more important things to deal with right now. At some point you might want to report this to the "proper authorities".