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Old 05-10-2023, 04:13 PM
 
Location: Bloomington IN
8,590 posts, read 12,336,894 times
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My father will be 81 in a couple of weeks. Overall he's in good health for a man his age. He walks several miles a day, eats a healthy diet, is a proper weight and mentally sharp. He is diabetic, but does not depend on insulin to control it. After his diabetes diagnosis over a decade ago he lost weight and began walking daily and has never needed to adjust medicines for that. He also has high blood pressure which is controlled with ACE inhibitors. The high blood pressure is likely due to genetic factors. His mother died of a massive stroke at 65. His father was out of the picture so we don't really know much about his father's medical history.

8 years ago my mother had to take him to the emergency room. His tongue and jaw was swelling and he was having difficulty breathing as a result of this. His primary care doctor changed his blood pressure medicine. One rarer side effect to his medicine at the time was an allergic reaction. It happened a second time a few years later. Last year the tongue swelling and trips to the emergency room started happening about every 3-4 months. In January he saw an allergist for testing. The allergist said he had something called alpha gal syndrome. This is an allergic reaction to mammal products such as beef or pork, sometimes dairy. It's caused by a tick bite. The treatment was to stop eating any mammal products. He's did so immediately.

This has had no effect. A month later he was back in the ER. The allergist told him to stop taking the blood pressure meds. (don't even get me started on that bad advice.) He stopped. Of course his blood pressure went up. Even more discouraging, my mother has had to take him to urgent care or the ER 2 more times since then. That brings us up to today. Dad called and asked me to send him the names of a few local allergists. He and my mother will return to their primary home here later this month.

I'm happy to do so. My husband thinks he should see a local cardiologist who is excellent because this seemed to begin with the High blood pressure meds. I'm wishing "Dr. House" was available. It's scary thinking about my mother driving him to the ER late at night when it generally happens. It's frustrating for all of us to not have what seems to be a real solution or diagnosis.

What type of doctor specialty would you suggest in this situation? Yes, I know there are no medical pros here or they can't really advise. Just looking for ideas.
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Old 05-10-2023, 04:45 PM
 
Location: northern New England
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Are there any gerontologists in your area? Older people can have complex medical problems like your dad.
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Old 05-10-2023, 07:21 PM
 
Location: on the wind
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Odd that he didn't get an allergic reaction every time he took that HBP med. That it occurred/occurs periodically suggests that there's more than one allergen involved in his reaction. Maybe they happen to hit in combination at the same moment, which sends him to the ER.

Just taking a stab here: Possibly he's becoming more and more sensitized to something like the gelatins used to manufacture capsules or pills? Many gelatins are mammalian-based. If he happened to take more than one med (such as an OTC med, vitamin or some other supplement plus the HBP) at just the right moment and BOTH had a mammal product-based gelatin ingredient, that might be enough to trigger an anaphylactic reaction?

An allergist could hopefully determine if his ER visits are really due to anaphylaxis, not something else that manifests in a similar way.

Last edited by Parnassia; 05-10-2023 at 07:35 PM..
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Old 05-10-2023, 07:33 PM
 
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Could he be allergic to the fillers in his HBP meds? Even if he gets them at the same pharmacy, that pharmacy will change the fillers to save money. I know some people who developed a chronic cough (another allergy symptom?) from their HBP meds and the doctor should change the medication if that happens.
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Old 05-10-2023, 08:13 PM
 
Location: San Diego, California
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It's unclear the type of reaction that is happening or I should say the source. It's unclear because there is no mention of itchiness mentioned. I might be wrong but it appears to be non-pruritic. Angioedema can occur with urticaria or without. Sounds like the main symptom is non-pruritic angioedema. Some blood pressure meds like ACE inhibitors can cause this even after years of being on them. ACE drugs are common with diabetes in trying to prevent renal complications.

Idiopathic (don't know what causes it) angioedema is rare and also rare to have such severe inflammation that may be life threatening.

An allergist is the one that has all the tools to be able to investigate that symptom.
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Old 05-10-2023, 09:19 PM
 
Location: Bloomington IN
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Thanks for all the ideas and suggestions. Keep'em coming. His primary care physician here sees many older patients, but I don't know that it's a specialty. Same for the one in FL.

I'll have to ask him again for the names of his meds. The gelatin capsules and fillers are definitely worth looking into. I'll have to ask about any other over the counter products he might take. I know my parents are both really careful now about ingredients, but I'm guessing they never thought about the gelatin or fillers. I know I didn't.

MedLab Guy--no itching prior to these attacks. I joined them at the ER the first time it happened years ago. It was so severe that it took several hours and IV bags of whatever to normalize it. They kept him overnight. That was the first time his doctor changed his ACE inhibitor. I've kind of thought all along it was and is the ACE inhibitor causing the problems.

I'll call a few allergists over the next few days. He had a full round of allergy tests in January, but getting another opinion is definitely worthwhile. For now, the FL allergist has asked that he record everything he ingests. He has an appointment with his primary care physician soon after he gets back here. I'm going to suggest he ask the doctor about switching to ARBs or that he see a cardiologist. He'll need a referral for the cardiologist I would recommend.
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Old 05-11-2023, 03:40 AM
 
Location: The Driftless Area, WI
7,246 posts, read 5,117,125 times
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Several points--

ACE Inhibitors are well known to cause angioedema-- not common, but not rare. Avoid all ACEs and ARBs are related so they best be avoided too, just in case....Allergies are tricky-- just like rain-- it can be cloudy all day for three days, but it only rains unpredictably for 10 minutes at a time twice in that three days....Why???

HTN-- "inherited HTN" is when it starts at age 30..HTN in the elderly is most likely due to gradual narrowing & stiffening of the arteries. A simple diuretic is often the only treatment needed...Accessively agressive treatment to get the pressure down to the 120/80 that the cookbooks claim is necessary is more often counterproductive-- causing fading of mentation, slowing of reflexes and increasing risk of falls from orthostatic hypotension...You gotta compromise in finding the best endpoint for treatment in the elderly.

Alpha gal syndrome is rare except in the SE. It's an allergy that seems to be associated with a certain tick bite causing an allergy to mammalian meat & dairy protein (including the gelatin in pills/capsules). The dx is suggested by allergic symptoms (rash, itching, swelling, hives) and confirmed by a blood test looking for the specific antibody https://www.cdc.gov/ticks/alpha-gal/index.html

Swelling of the lips & tongue is probably angioedema (a descriptive word, not a dx)-- it's nailing down the cause, if anything specific, that's the problem. Because this case seems to be unpredictable, maybe it's just time to start steroids. Those will aggravate the pt's BSs, but at this advanced age, control of BS is not all that important. Hi BS is not a poisonous situation that will cause significant damage in just a few years, let alone a few months. BS usually stabilizes no higher than ~220mg% when left untreated-- not a big deal at this age. Diabetic complications take 20-30 years to develop.
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Old 05-11-2023, 12:35 PM
 
Location: Redwood City, CA
15,250 posts, read 12,949,985 times
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Quote:
Originally Posted by rrah View Post
That brings us up to today. Dad called and asked me to send him the names of a few local allergists. He and my mother will return to their primary home here later this month.

I'm happy to do so. My husband thinks he should see a local cardiologist who is excellent because this seemed to begin with the High blood pressure meds. I'm wishing "Dr. House" was available. It's scary thinking about my mother driving him to the ER late at night when it generally happens. It's frustrating for all of us to not have what seems to be a real solution or diagnosis.

What type of doctor specialty would you suggest in this situation? Yes, I know there are no medical pros here or they can't really advise. Just looking for ideas.
If you were closer to New York I would recommend Thomas Bolte MD.

Years ago an online friend contacted me to say that he had a mysterious debilitating illness and none of the literally-dozens of practitioners he'd seen knew what it was. Research is my thing, so I found Dr. Bolte and gave my friend the information. The friend was in Texas but he said Heck yeah, I'll go to New York and get checked out.

My friend came back without a diagnosis. Shortly after that he and his wife decided to get rid of their newish memory foam mattress and got a cotton one instead. His illness cleared up. My friend said Dr. Bolte had asked him if there was anything new in their home environment. My friend didn't think to mention the memory foam mattress.
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Old 05-11-2023, 12:55 PM
 
1,781 posts, read 1,204,228 times
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Get him off the ACE inhibitor for a start. I am allergic to them. If it matters, I took one for several weeks and didn't react until they increased the dose.

When I went to the ER they said they get someone in there every week for that. It happens to less than 1% of the people who take them but so many people take them it is still a lot. You can google more info on ace induced angioedema if you want more info. Doctor said I do not fit the profile to react to them (race) but I did so who knows. . . ARB is fine in my case.

They didn't use an epipen as it is not a "true" allergy. Gave me IV of some various meds which calmed it right down and said no more ACE.

Cardiologist should have alternatives for his situation.

Last edited by ihatetodust; 05-11-2023 at 01:19 PM..
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Old 05-12-2023, 08:46 AM
 
Location: Juneau, AK + Puna, HI
10,547 posts, read 7,739,679 times
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Quote:
Originally Posted by rrah View Post
..The allergist told him to stop taking the blood pressure meds. (don't even get me started on that bad advice.) He stopped. Of course his blood pressure went up. Even more discouraging, my mother has had to take him to urgent care or the ER 2 more times since then. ...
How long was he, or has he, been off the blood pressure medication, and has he had a blood panel performed and evaluated?

I'm curious what happens in the ER during his visits. Perhaps you could do the same at home and skip the hospital trip.
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