Possible sulfa allergy??

First topic message reminder :

Well, something new has arisen with me which requires more research.

A few months ago, my sister asked my brother and I if we were aware that our dad almost died years ago from an allergic reaction to sulfa.  She said our mother had told her about this years ago.   She also told us that she too is allergic.   She said several years ago one of her doctors gave her a prescription.   As soon as she started taking it, her tongue swelled up, and her throat started to close.   She told my brother and I that we should definitely tell all of our doctors that we may have an allergy to sulfa just to be safe.

I have also been frequenting a Facebook adrenal insufficiency support group page since I realized I had this problem.    Last night a woman on there posted that she had burned her arm badly with bacon grease.   People started replying, telling her of good burn creams to use.   This brought to mind an incident I had about 7 years ago.  I had gone to the beach with my best friend of 45 years at the time.   I have always loved the sun and have loved to sunbathe.  Well, until this summer.   This summer I can't handle the heat, and the sun makes me nauseous.    Anyway, while I was lying on the beach, I got a severe burn on my breast, right through my swim suit!!!   This was a brand new swim suit!  I guess there was a flaw in the fabric or something.  I don't really know, but it was a horrible burn!   I also burned badly through the bottom portion of the suit, on the side/front.    Both burns blistered.   The burn on my breast was about 3-4 inches in diameter.   I still have a dark purple scar there.   It was really bad.    My PA had given me some special cream to use on these burns.     Last night when we were discussing burn creams, this came to mind.    I started thinking that the cream contained sulfa.    Then I started wondering something else.

Last week I had a new symptom arise.   The inside of my mouth became VERY sore.   All surfaces inside of my mouth!   My gums were so sore and sensitive, they would bleed when I brushed my teeth.   This NEVER happens!   I had bumps and sores in there too.   I had trouble eating because of all the pain in there!   My tongue felt swollen and EXTREMELY dry and painful, just like the rest of my mouth.   I remember my sister saying when she had that allergic reaction to sulfa, her tongue swelled and her throat started to close up.    I started to wonder if just possibly any of my current medications contain sulfa.    I got on the internet  to check this out.    I couldn't believe what I discovered!!!   Both Lasix and hydrochlorothiazide contain sulfa!!!!!    I have been taking these 2 drugs alternately for the past 14 years or so!    I got back on the internet to check for symptoms of sulfa allergies.    It would appear that many of the symptoms I am still dealing with can be caused from a sulfa allergy!    

For about 14 years, I have been having trouble swallowing.    I have had 2 barium swallow tests to try to determine what the problem was.   We assumed it was my thyroid causing the problem.   The tests revealed that there was no obstruction, but I indeed did suffer from dysphagia.   I just couldn't swallow normally.  I had to really force myself to swallow.   It always feels like my throat is trying to close.   I can still breath when I am sitting up, but when I lie back at all, my airways completely closes.   Now, I know people with sleep apnea have this problem.   I myself was diagnosed with sleep apnea a few years ago.   I am a little overweight, but I am not obese.   I wouldn't think my throat should be feeling so closed up all the time.

Also, long-term use of sulfa-containing drugs can cause kidney damage.    I am wondering if this is what is causing my renin to be low, causing my aldosterone to be low,  causing my abnormally low blood pressure.    My nephro is trying to figure this out.   I am on Florinef to try to correct the aldosterone problem, raising my blood pressure.    Wow, wouldn't it be something if a lot of what I've been experiencing is being caused from an allergic reaction to sulfa?    

And, this makes me wonder again, what the heck is wrong with my doctors?!    I have now told them all that I could have a possible allergy to sulfa.   Do NONE of them know there is sulfa in Lasix and HCTZ?!!!    

I called the nephrologist's office today to discuss this with the receptionist.   I mainly wanted to ask her for a prescription for a different diuretic; one that does not contain sulfa.    She really annoyed me.   I told her about my dad and about my sister.   She said, "Well, if you had an allergy to sulfa, it would be very obvious!  You would know it!   I have seen people react to sulfa, and it is really ugly!   They all have had terrible rashes to start with.   Do you have a rash?"    I told her I didn't, but I told her my sister never had a rash.  I repeated that her tongue swelled up, and her throat started to swell and close up.   She repeated that if I was having a reaction to sulfa, I would know it.  I would have symptoms.  ?????    I repeated that I DID have a lot of symptoms, and I've had some of them for many years!    Again she said if I didn't have a rash, it was very unlikely that that was my problem.  What the heck?!      Then she said, "Well, if you've been taking products with sulfa for 14 years, you'll be ok until you come in to see the doctor next. When are you scheduled to come in next?"   I told her in 3 weeks.  She said, "Oh, well, you'll be ok until them."    REALLY?    I am terribly sick!    Why should I wait 3 more weeks, if we can try something now to try to help?   If a new diuretic doesn't help, we'll know that isn't my problem.  However, if my hunch is right, and it would make a difference, why not try it NOW?!      I am going to call back tomorrow and talk to the other receptionist.   She is the regular girl.   She was not in today.     I think she might help me out.

Low aldosterone can increase allergy symptoms.   I am wondering if maybe I'm now getting the extra symptoms because of the low aldosterone.  If you recall, I recently had terrible trouble with both of my ears.  My entire head was congested, and it has never totally resolved.   I am wondering also if this might be from the low renin and low aldosterone, and it's all being caused from the darned sulfa.

I am praying that it is the sulfa causing at least some of my symptoms.     I am very anxious to find out!

Audrey

Hi Audrey,

I know what you mean about losing faith in doctors. I feel that my confidence in them has gone and what's the point in going to see them unless I have a clear objective such as needing a prescription or blood test. I have to remind myself that they are only human. I found out the GP who told me I should 'be grateful it wasn't cancer' had a daughter with Leukemia which helped me understand why she seemed so uncaring at the time, she obviously didn't mean to come across as so dismissive, she was just struggling herself. I will try and remind myself of that the next time a doctor is unhelpful.

Oh, I pray God will carry you through this next week so you can get the blood tests and get on some meds that don't make you so sick! It's so hard to be positive when your body is falling to pieces. You seem to be so close to getting answers but I guess it may still be a slow road for your body as you search for the right pills and it adjusts. I'll ask for good peaceful sleep too.

We need you Dr Aud, you're the best doctor we have.

Lots of love,

Dee xxxxxx

Ditto that Dee..... 

J x

Double ditto, Dee and Jasmine. Don't give up, just yet Audrey, I'm sending you loads of cyber hugs across the pond, zeroing in on you the moment you log on so you can't miss them. Hope you get some rest and put your feet up over the weekend. 

Lots of love and hugs 

Brigitte xxxx

Yes, Dr Aud, take some time for yourself if you can. Have a warm therapeutic bath before bed and do something during the day that you really like to do.

I'm on holiday for 2 weeks from Sunday, but I hope those 2 weeks provide some answers for you.

Hang on in there, Audrey - we're all behind you wishing you well.

Love from Tigerlily xxxx

You are all so wonderful!!! Again, I don't know what I would do without every one of you!

Thank you so very much for your love and support and hugs. That is what keeps me going on my rough days.

Last night I went to bed VERY depressed. I kept wondering what was going to happen if we couldn't find a diuretic that was going to work for me, and it didn't seem like we were going to.

I gained 2 pounds of water on Wednesday without the diuretic. I gained 2 more yesterday. My feet were so swollen, they would hardly bend when I went down the stairs. It looked and felt awful.

I have a busy day planned for tomorrow. One of my granddaughters has a soccer game. Her sister has a 4-hour gymnastics session, now that she is going to start competing. My husband is directing a car cruise here in our area in the afternoon, which I would like to attend. It is going to be a long but fun day. We are having a little heat spell here at the moment. It will be in the 80s for a few days, including tomorrow. I still can't handle the sun and the heat. I especially couldn't imagine attempting it all looking and feeling like a blow fish!! So last night I caved and took my regular dose of my current diuretic. I hated to do that for 2 reasons. First of all, because of the darned sulfa content, and secondly because I need to stay off of it for my bloodwork next week.

I woke up this morning with my feet and ankles looking a bit better. I lost 3-3/4 pounds of water overnight. I figured I would take the diuretic again tonight and then stop until after my blood is drawn next week.

It looks like all of your prayers and well wishes were heard by the big Guy upstairs! My phone rang this morning. It was my nephro's receptionist. She was supposed to call back yesterday, but when she didn't, I actually took that as maybe a good sign. I wondered if maybe the nephro was taking some time to think about this. It looks like I was right. The receptionist told me that the doctor has chosen a diuretic which he feels should work well. She said it is good for someone with a sulfa allergy, and it will not affect my potassium level! This diuretic is ethacrynic acid.

Ethacrynic acid was third on my list of 4 diuretics which I found on the internet, when researching for sulfa-free diuretics. Triamterene was first on the list. That was also the one the pharmacist first suggested, which the doctor didn't like, because it could elevate my potassium. Sponolactone was second on my list. That was the one I suggested to the doctor. He didn't like that one either, because it could also affect my potassium. I never had a chance to suggest the ethacrynic acid, as the receptionist told me she would contact the doctor and let him make the decision. It would appear, had I researched just a bit longer, I would have learned that ethacrynic acid will not affect potassium levels.

While I was talking to the receptionist this morning, I told her I was very happy we finally have one that will work. She said, "Yes, a little research goes a long way." I assumed she was talking about the doctors research. I almost said something to her about all of MY research, but I didn't. I still don't understand why I had to do all of that research, when it is my doctors job. I'm just happy we finally have a new diuretic! My hubby picked it up for me on his way home from work today. I now need to know if it will affect my aldosterone and renin levels. If not, I can continue taking it and not have to stop for my bloodwork.

Internet, here I come!!!

Thank you all so much again for being here for me!!! As soon as I'm finished cleaning my house today, I'm heading out to my pool to celebrate!! Wish you could all join me! What a fun afternoon we would have!

Love,
Audrey

Well done, Audrey - so glad you got a result with a suitable diuretic!
You do so much work on this(as, it would appear, you have to do). I do so hope you will be carrying less water for the family weekend and be more comfortable.

Love from Tigerlily xxxx

PS On holiday for 2 weeks now - back 15 Oct.

Thanks, Tigerlily. Yes, I was very happy to finally have a safe diuretic to try. Unfortunately, I've taken it for 2 days now, and it doesn't seem to work nearly as well as the triamterene/HCTZ capsule. I think I may need a higher dose. I will see my nephro in 10 days. I hope he can adjust things to better rid me of all of this darned water! I might need a higher dose of the Florinef also. I guess eventually we'll get this all figured out.

Hope you have a wonderful holiday, or as we say here in the US, vacation!

Audrey