Possible sulfa allergy??

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

Oh, well done, Dr Aud, for sleuthing this out - and what a terribly insensitive receptionist!

They are only just beginning to learn over here (receptionists, that is) that they should not diagnose these things themselves, or say things like she said to you - as they are putting themselves in the firing line for litigation if they are not right. Ye, gods, what are these people like?!

Let us know how it goes with the other receptionist tomorrow, Audrey. I do hope you get a better response from her. That sulfa connection is really interesting.

Love from Tigerlily xxxx

Yikes Audrey you don't do anything by halves girl, when you get an idea you sprint with it! Applause ..

Well, I'm gonna have to read up on Sulfa allergies now, I'm intrigued......! Go battle the receptionist Dr Aud, keep us posted.

Jasmine x

Dr Aud on the case again  I do admire you for your research skills and tenacity! I hope you have more luck with the other receptionist and she listens without prejudice or preconceived ideas. Let us know how you get on as it sounds as though it should be looked into since there is a family history. 

Love and hugs 

Brigitte xxxx

Thanks, girls.   I have no idea if I'm on the right track here, but I figure it's worth a shot.  

I've been all over the internet searching for symptoms, and the more I found, the more excited I became.   The one that really stood out, and I almost cried when I saw it, was "Unexplained neck stiffness."    My neck has been terribly stiff and painful for close to 4 years now!!   When this first started, it hurt for about 4 months, then let up for about a month.  Then it hurt for about 6 months and let up for a couple of weeks.     Then it started hurting and has not stopped since.    It hurts on both sides and extends up toward the front.   I think this has a lot to do with why I haven't been able to sleep for years.   It just hurts too badly.    I hate taking any medication for pain, because my liver and kidney tests have been abnormal in the past, and I don't want to make those matters worse.   So I just try to deal with the pain.  I am still going for massage therapy for relief.  I don't know if it helps.    

Sulfa can not only cause muscle pain and stiffness, but nerve issues (I am still twitching and jerking), persistent headache, dizziness, fatigue, intestinal issues, bloating, muscle weakness, joint pain, difficulty swallowing, muscle cramps and spasms, blurred vision, mouth sores, puffiness of eyelids or area around the eyes, hair loss, swelling of tongue and/or throat, infections, tingling in hands and feet, nausea, and, as mentioned earlier, kidney and liver issues.   I am suffering with ALL of these symptoms and have been for a very long time!

So my fingers are crossed that I have FINALLY found the cause of my unrelenting neck pain and at least some of my remaining symptoms.

Audrey

That would be something if all this time it was the meds. Go get um Audrey.

Thanks, Kathi. I'm sure hoping this has something to do with all of the symptoms I'm dealing with! It would be nice if it were that simple, but I will be very angry that nobody thought of this 4 years ago when I first got became so darned sick!

Audrey

Thought you all might like this.

Oh Audrey, how true is that! It's funny but oh so sad because it's just so accurate for us.

Jasmine x

Yes, Jasmine it is sad but very true! Seems we've all had to diagnose ourselves and then convince the darned doctors. They should have to pay US!

Audrey

That is just so goooood, Audrey!

Love from Tigerlily xxxx

Glad you liked it, Tigerlily. It hits home for so many of us!

Audrey

Well, nothing is ever simple, is it?  

I had called my neprho's office last Thursday to ask if he would order more 90 mg Armour for me.   He was not the doctor who originally prescribed the 90 mg tablets.  It was my endo who did so.  However, I HATE calling my endo's office, because they NEVER answer their phones, and it takes 10 minutes to get to the point where you can leave a message.    Then, if you're lucky, they will return the call the next day.   They very rarely return a call the same day, even if you call first thing in the morning.    The last time I called them, I left a message for the nurse to call me back.  She never did.  That was over a month ago.

For some reason, the mail-order pharmacy I use through our insurance, deleted the 90 mg Armour from my list of prescriptions.  I used to get 60 mg tablets.  Then my dosage was raised to 75 mg, so I had to start getting 15 mg tablets also and and one to the 60 mg tablet daily.    Over time, my doctors raised the dosage to to 90 mg.   So my endo called in a script for 90 mg tablets and told the pharmacy that the 90s would now take place of the 60s.    A few weeks ago, my nephro raised the dosage to 105 mg.    So I then started taking one 90 mg tablet and one 15 mg tablet daily.    All was well, until I went to reorder the 90 mg  tablets last week, when I learned the pharmacy had deleted those 90 mg tablets from my list!    I learned that another doctor, for some reason, had called in a script for 60 mg tablets AFTER the 90s were ordered, so the pharmacy deleted the 90s!!    

So when I called my nephro's office last Thursday about this, the receptionist told me she would relay the info to the nephro, and it would all be taken care of.    I still had no email confirmation this morning from the pharmacy saying they received the order, so I called again today.

I had also mentioned to the receptionist last Thursday the fact that I could possibly have an allergy to sulfa, because as I mentioned earlier in this thread, my dad almost died of a severe allergic reaction to it, and my sister also had a bad reaction to it.      Also, mentioned earlier, I told this woman that the 2 diuretics I've been taking alternately for the past 14 years both contain sulfa!    That was when the receptionist told me I would be fine until I saw the doctor at my next appointment in 3 weeks.   Again.......

So today I called them again to ask about the new script for the 90 mg Armour tabs, and I also decided to just ask for another diuretic!    I was not going to wait 3 more weeks.   Not suffering as I am.  If there is any possible chance the sulfa in the diuretic is causing any of this crap, I didn't want to be taking it any longer!

This time the male receptionist answered the phone.   He pulled my chart and told me that they were waiting for an authorization from the doctor for the 90 mg Armour tabs.  ????   I told the woman last Thursday that I only have enough pills left for about another week.   Once a prescription is called in to the mail-order pharmacy, it takes about 10-12 days for me to actually receive the prescription!!!!    He told me he would take care of this for me.

Then I asked him about a new diuretic WITHOUT sulfa.    He told me he would page the nephro and ask take care of everything for me.

A couple or hours later, he called back.   He told me it was all taken care of.  Wow, that was easy!    He said he called in the 90 mg Armour, and my new diuretic would be Lozol, which he also called in for me.    I was thrilled!

I hung up the phone and came in to my computer to check out Lozol on the internet.   The first thing I read was, if a person is allergic to sulfa, they should NOT take this drug!!!????   I checked several different sites, and they all said the same thing!   Lozol was grouped with HCTZ and Lasix as containing sulfa!!    I am VERY disappointed that the nephro chose Lozol as my replacement!!    I have beey very impressed with him up until this point.

Instead of calling the nephro's office back immediately, I called our local pharmacy.   I explained this all to the pharmacist.   She confirmed that I indeed should NOT be taking Lozol if I could have a sulfa allergy!    She suggested I take Triamterene.    I told her I used to take Triamterene, but I thought that was generic for HCTZ, because I remember the label stating "HCTZ."   She told me that it wasn't.  She said Triamterene is generic for Maxide.  

So I hung up the phone and went to find an old bottle of the Triamterene I used to take.  I found a bottle.  It stated "Triamterene/HCTZ."     It was a mixture of both!!   So I was ingesting sulfa all those years when I was using this drug!      

About a month or so ago, I had called my PA's office to ask her if I should still be taking a diuretic because of my extremely low blood pressure.   I was still full of water though, and I needed to get rid of that, but I was afraid of my BP dropping lower.   My PA was not in that day, so another doctor (the idiot doctor who laughed in my face when I was trying to get diagnosed with hyperparathyroidism) suggested I half the dose.   I told the nurse that I couldn't split it because it was a capsule.   So the idiot doctor prescribed pure HCTZ tablets that I could then split!    If she had half a brain, she would have noticed that I had been taking Triamterene/HCTZ capsules, not straight HCTZ.    I know I told them I have a possible sulfa allergy, so it was a very bad move on her part to prescribe a diuretic which contained even MORE sulfa!!     This could be why a couple of weeks ago, I started having all that trouble with pain, dryness, sores, and bleeding in my mouth, and why my tongue was swollen and sore and at times sticking to the bottom of my mouth!

So I called my nephro's office back.   I told the receptionist what was going on.  I told him that Lozol, which the nephro had prescribed today to take the place of the HCTZ, also contained sulfa!   I told him I called the pharmacy to confirm this.    He apologized and told me that he only does what the doctor tells  him to do.   I told him I totally understood, and that was fine, but I needed a script for a diuretic with NO sulfa.    He asked me if the pharmacist suggested anything.   I told him she suggested Triamterene.   He asked me to spell it for him.  I did.   He said he would be hearing from the doctor again this afternoon, and he would take care of it for me.   I thanked him for his trouble, and I hung up.

I went straight to the internet to further check out all of this.    I was VERY surprised to learn that Triamterene is NOT generic for Maxide, as the pharmacist had told me.   It seems Maxide is a combination of Triamterene and HCTZ!!!!     I was very surprised that the pharmacist was wrong about this!      I sure hope the  nephro orders Triamterene as I asked, and does not prescribe anything else to be combined WITH the Triamterene, or I will have to request something else!    

The pharmacist did say that it sounded like I was having an allergic reaction to something, and she guessed it just might be the sulfa.

Oh, my gosh!!!!     I will be happy when this is all taken care of for good!

Audrey

Hell's bells Audrey, I was having a virtually identical conversation today with another GP about the retired idiot who prescribed me another thiazide which is contraindicated in pHPT and guess what, he said it was perfectly safe to take and the pharmacist who advised me otherwise is wrong! And when I told him I'd looked it up on Drugs.com which said the same he told me I had misunderstood and probably was reading it wrongly. Looks like I've got me another idiot GP......   And he's from Cambridge don't ya know, so I'm not impressed! Needless to say, I've emailed Miles Levy for advice on what he would prescribe. I'm just so  flippin' weary of it all. You're right Audrey, why does everything have to be so hard!

Jasmine x

Oh, my gosh, Jasmine, what is going on with these doctors, and what are we paying them for?!! So sorry to hear you're going through this too! You know, I keep thinking about my gastroenterologist telling me several months ago that I should stay off of the internet. He told me this when I questioned something he was telling me, and right now I can't remember exactly what that was. When he told me this, it angered me, and I replied, "If I would have stayed off of the internet, I would still have 2 tumors in my neck!" It really frightens me to think of all the things that would be different if I stayed off of the internet!

Audrey

For crying out loud Audrey and Jasmine! I don't believe the strife you are having to go through to get anywhere. How frustrating are your lives, I'm so sorry. I can't do anything except commiserate with you. And, wait for it, send you massive,  great big, huge hugs to help you feel a tiny bit better. As you know, I'm good at hugs, so hope you feel as if someone cares 

Love 

Brigitte xxxx

Ohhh boy ladies,
It is such a minefield and it seems even when you flag up allergies or contraindications, they choose to ignore or not do their homework on exactly what they do.  I hope it is a one off with your new GP and that Dr ML gets back to you soon with an alternative.  I saw my GP last night and discussed what to do about my acid reflux which has got worse since starting Vitamin D.  He was going to prescribe a PPI but at least he listened when I said it decreases urine calcium and mine is low enough already.  So he has given me Ranitidine and is throwing in a gastroscopy for good measure.  I said I thought it was all from the raised calciums but he thinks I should have it done.  I am not looking foreward to it.  Also brought him up to speed on my "progress", bamboozled him with CCCR results but at least he listens.
Hope you both get your meds sorted,
Sue x

Well at least we know of ONE GP in the UK then who is actually proactive and listens! Pleased for you on that at least Sue; with everything you're going through it must be reassuring to know you've got a good GP. Oh how I lament the departure of my two previous GPs in the practice, one who would walk a million miles to try and help his patients who sadly took medical retirement following cancer treatment, and the other, who actually diagnosed me with pHPT after I broke down in his room and he insisted we keep looking for the cause of my debility, who moved to another practice in the Peak District to be nearer to his elderly parents - both really good, thorough and compassionate doctors. Deep sigh .......!

Don't worry too much about the gastroscopy Sue, I've had it done and I was feeling exactly the same as you at the thought of it, and not looking forward to it, but it actually wasn't as bad as I thought it would be, you're well sedated and I actually could hardly remember it afterwards. Best to have it to be on the safe side to rule out any potential nasties as your reflux has been so bad. I take Ranitidine as well after idiot GP no1 prescribed a PPI after me categorically saying I didn't want a PPI (so I didn't even fill the prescription), and it works reasonably well for me.

Jasmine x

So sorry you Ladies are going through it - I'm exhausted by it all myself at the moment - can only sympathise and send a few Dr-Cats

Love from Tigerlily xxxx

Thanks so much Jasmine for the info, I did do a wriggle on the chair with the "Do I really have to have this done?"  I feel he does treat you like a person and not a number but again I think he is old school and experienced.  He said it will be not be at the hospital but the local treatment centre that does work for the NHS so I would think it will be pretty quick to organise.
All good fun!  Sue

Well, thank you ladies for the hugs and the cats. They always make things better!

Received a call from my nephro's receptionist this afternoon. The doctor does not want me taking the diuretic (Triamterene) the pharmacist suggested. He said even though it doesn't contain any sulfa, it would raise my potassium too high due to the hypoaldosteronism. Low aldosterone causes sodium to be low and potassium to be high. I have actually been taking Triamterene for the past 14 years or so, but it has been combined with HCTZ, which lowers potassium. I guess that's why my potassium has not risen abnormally high yet.

Now, here is something that I don't understand. Instead of the receptionist telling me of another sulfa-free diuretic recommended by the nephro, he asked me if the pharmacist I talked to yesterday had any other suggestions. ???? Diuretics directly affect the kidneys. Nephrologist are kidney specialists. Shouldn't a neprhologist have some idea which diuretic I should be taking? I don't get this.

I told the receptionist that I knew there were other sulfa-free diuretics, because I've been searching on the internet, but I couldn't remember exactly what they were at that time. Again he mentioned that I should talk to the pharmacist. So I offered to call her again. He said that would be a good idea. I don't know. Something doesn't seem right here. Why am I doing the doctor's work again?

The receptionist didn't seem concerned at all when I told him I was not going to take the Triamterene/HCTZ tablets any longer which I had here. I was going to stop them anyway after tonight, in preparation of my upcoming bloodwork next week, so I guess it's no big deal. Although, since the Florinef I'm taking for the adrenal insufficiency could cause edema (even though it is supposed to balance my electrolytes and balance the fluid), and I was already VERY full of water before I started taking it, this could get very ugly, and it might not be too safe.

So tomorrow I will be calling the pharmacist again for another suggestion for a sulfa-free diuretic which won't raise my potassium.

Audrey

Oh Audrey, that does all sound confusing. I hope Dr Nephro hasn't fallen too far down in your high opinion. Perhaps his receptionist got it wrong or perhaps Doc Nephro believes in your excellent research abilities, but it does sound as though you always need to be doing lots of legwork for yourself and can never rely on your doctors to get on with it without a lot of input from you. It's a good job you're resourceful, but it would be best if you could have a rest from it all and concentrate on your recovery. I really hope the pharmacist has some suggestions for you. 

Sending you loads of healing hugs. 

Love 

Brigitte xxxx

Thanks, Brigitte. I have to admit my opinion of him has fallen a bit. I still don't understand why a nephrologist wouldn't be able to choose the correct diuretic for a patient. I don't understand that at all. It really bothers me that he prescribed another one which contained sulfa, after I made a point that I needed a new one because I might have a sulfa allergy. Very disappointing.

I did call the pharmacy again yesterday. The pharmacist asked me if the nephro was aware I have been using triamterene with HCTZ as my diuretic for the past 14 years. She was asking me this because I told her he had said I wouldn't be able to take triamterene alone because it is potassium-sparing, and low aldosterone (which is what I'm dealing with now) causes high potassium and low sodium. I told the pharmacist that I had told the receptionist that I have been taking triamterene/HCTZ for 14 years, and that I assumed he relayed that to the doctor.

The pharmacist then asked me if I had any other diuretic in mind to use now. This is so funny. I am not used to my doctors and my pharmacist asking ME which drugs I'd like to take! I told her I had noticed spironolactone on the internet. I asked her opinion on this one. She said it is also a potassium-sparing drug, but that it comes in a smaller size than the triamterene. It comes in a 25 mg tablet. The triamterene comes in a 37.5 mg tablet. She told me the doctor might be willing to try the spironolactone since I could take less with each dose. You know, now that I think of it, I could always split the triamterene tablet in half, but then that might not be enough, I guess.

So I got back on the internet to research spironolactone further. Turns out spironolactone lowers aldosterone!!! I cannot take anything that will lower my aldosterone; it is already way too low, which is why I'm so sick!

I called the neprho's office today again and ran this buy the female receptionist, who was working today. I was very impressed that she followed this entire story without getting lost, as she had no idea about any of this until I called her today. She said the doctor is actually on vacation this week. He had asked her not to call unless it was very important. She felt this WAS very important, thank goodness. So she was going to call and run this all by him and then call me back later on today. She has not called yet, but at least they are working to solve the problem.

I also mentioned to the receptionist that the doctor did not check off aldosterone and renin on my lab slip, and I assumed he would want to check those levels with my next blood draw next week. She told me to just check them off myself! This surprised me. She said if that's what we've been following, he probably just forgot to check them. She also said if I'd like to have those levels tested, I should go ahead and check them off. So that's what I will do. I didn't know a person could do that without getting in trouble. I don't know why.

Hopefully, soon, I will have a new diuretic! I took my last trimaterene/HCTZ Tuesday night. I did that for a couple of reasons. First of all, it does contain the sulfa, and I wanted to stop as soon as possible, but also because I will be going for more bloodwork next week, and I need to be off of the diuretics for a while before the blood is drawn, so we can get the true aldosterone and renin levels. Since the HCTZ raises aldosterone and renin levels, I would not get true levels if I was taking it when the blood was drawn.

You know, now that I think of it, if the nephro is on vacation, maybe that is why he prescribed an inappropriate new diuretic for me on Monday. He still should have done a bit of research himself before prescribing it, but maybe he just made a mistake, thinking it was sulfa-free. Like I said, he still should have taken the time to research it, but I guess if he is at home or vacationing somewhere else, maybe he was not able to get to a computer? I don't know, he is 59 years old. I would think he would know which diuretics don't contain sulfa. Unless, maybe he never had to worry about that before. Maybe he doesn't have too many patients with adrenal insufficiency? Hmmmm............

So that is where it all stands right now.

Audrey

Oh Audrey, and so the saga continues....... why does everything have to be such a fight and why do we have to be so watchful and be our own advocates....? And what about all the poor souls out there who can't or don't know how to advocate for themselves....! A terrifying thought .....! Hope your little nutty professor comes through for you Audrey, you had such high hopes for him!

Jasmine x

I don't know, Jasmine. I remember when we used to go see doctors to make us well. Seems like now I go to teach them how to diagnose different issues and how to prescribe medication. What the heck? I know I'm not alone with this issue. It is sad, isn't it? I have the feeling now that the next time something goes wrong, I might as well just stay home and hit the internet. No sense seeing a doctor. I know that sounds awful, but I have now lost all faith in them all.

I'm just having a bad day. Not feeling well and wondering if I ever will. I know I'm not alone with THIS either. I'm so tired of struggling and working to reach that final goal of wellness. I'm EXTREMELY exhausted today; more so than usual. I am wondering if it's because I stopped the triamterene/HCTZ capsules on Tuesday night. HCTZ raises aldosterone and renin. Now that I've stopped taking it, my levels have probably dropped even lower, and they were both abnormally low already. I just feel like my body is going to grind to a halt. I feel like collapsing from weakness and fatigue. Oh, I'll be ok. Maybe I just need some sleep.

Audrey