So many people have had adverse reactions to treatment, from mild reactions to severe. How have you dealt with this situation?

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So many people have had adverse reactions to treatment, from mild reactions to severe. How have you dealt with this situation?

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So many people are struggling to find the right treatment for their medical condition.

My mother suffered with Parkinson’s disease and dementia. My father had heart disease, high blood pressure, bladder cancer and a stroke.

My brothers have dealt with serious heart issues and diabetes.

My mom was a patient at a teaching hospital at one point in time and she often felt like she was being used as a guinea pig for experimental purposes.

What do you feel is the best way of communicating with our doctors about adverse reactions to medications?

Care Decisions Family Caregiver Medical Care Medication Management

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Just tell them!! I have been on a BP med for about 4 weeks now, and it had been horrible! I went back Monday and my Dr could not believe I had not called her to let her know,, but I just thought maybe it would be better with time. She has changed my meds, and put me off work this week to clear the one drug and see if the other one helps. I kept planning to call her, but then I would have a decent day,, but my BP was still high! She is a friend so maybe I hated to complain to her,, but I am sure glad I did! I get your MOm feeling like a guinea pig,, I work at a teaching hospital!

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Yes, it is important to be honest. As you know, Pam, my mom died in 2021. I remember my parents feeling like their doctors were always right.

It is truly sad that people don’t speak up when they need to.

Mom told me about things but wouldn’t always tell the doctors. That generation felt intimidated by their doctors.

Mom had Parkinson’s disease and Parkinson’s patients can struggle with low blood pressure.

I took her to the ER one Saturday morning because she wasn’t feeling right. She was on BP medication due to having high BP earlier in her life.

After she was diagnosed with Parkinson’s disease she was still taking the medication and her BP dropped too low. The hospitalist took her off the BP meds and she improved.

I went to a teaching hospital for my allergies. The tech was supposed to give me injections in one arm one week and the other arm the next week and then both arms the following week.

I caught him messing up my dosage and did speak up. First, he argued with me. I politely asked him to check his chart. Then he saw that I was correct.

Well, one day I was leaving the hospital after getting my injection and I decided to stop by my parents house to say hello. It’s a good thing that I did. I had a systematic reaction and nearly died. My dad took me to the nearest hospital and they treated me immediately but it’s so frightening to have adverse reactions to treatments.

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Communicate the issue clearly and in a timely manner. Doctors are not mind readers nor do they have the time to follow up with you, so it's important that you take the initiative.

Trust me, they appreciate that type of communication instead of you waiting until the next appointment to tell them something isn't right.

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Very true. People should say something as soon as they notice something unusual instead of waiting for things to improve.

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Marcus Welby doesn't exist, and if he did, he'd have 10k patients in a warehoused medical bldg where he'd devote 15 minutes of his time to a patient, let's face it.

Medical treatments all have side effects, many of which are unknown to doctors themselves. We can get 15 different opinions on what's going wrong with any given treatment at any given time by speaking w 15 different doctors. Spin the wheel and take a chance that treatment 1 will work and not cause more side effects than it cures. Or try treatment 2 and cross your fingers. Or watch treatment 3 give you brain damage but perhaps prolong your life by a year.

It's all a crap shoot, no matter how we "communicate with our doctor" on the subject! Half the time they have NO CLUE what your side effects will be or even how to treat it. It's rare so who knows? How's that for an medically educated guess? 😑

Advocate for yourself. Get another opinion. Throw the meds in the trash if they disagree with you. Take them if they don't. Make the sign of the cross and hope for the best, basically. That's where I'm at these days with doctors not communicating properly between THEMSELVES on our behalf.

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Lea,

I agree that it’s a crap shoot. I sometimes believe that it’s all trial and error.

I understood why my mom felt like she was a guinea pig when she was being treated for her Parkinson’s disease. They would try this or that, adding a drug, taking away a drug, and trying to find the correct dosages.

Yeah, it is true that every medical treatment will have some sort of side effects. It may help in some ways but be harmful in other areas.

The entire thing becomes a roller coaster ride for many that are patiently waiting for their ride to end successfully.

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Usually if the prescription med isn't for anything serious, if I find I can't tolerate the pills, I just stop taking them. At my next doctor's visit I let him know no-can-do.

Most of my life I have been pill sensitive, turn out my Mom had the same issue.... never knew that until she was in her 90's as my parents were always hush hush when it came to personal health matters.

With pills, it could be the filler that makes the pill large enough to pick up.... or it could be the binder that holds the pill together.... or the coating that makes the pill easier to swallow.

Currently, I am searching for a vitamin pill used for Macual Degeneration that I can tolerate. I tried the over the counter ones, nope. Recently an eye specialist had recommended Focus chewable, nope as the citrus flavoring messed with my Gerd. Now I am trying the regular Focus pills, so far so good... we might have a winner here.

In the past, I remember when doctors would hand out sample packets. Haven't seen samples in a long time. My eye vitamin try outs were around $50 a bottle. Expensive experiment. Sig-other is just starting with Macual D, so I will save those unused bottles for him. He never has any side effects.

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It’s a shame that you are sensitive to meds.

I don’t think most of us pay attention to fillers being an issue. Thanks for pointing this out as being a potential problem.

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With more and more research and more and more information I see also more and more "disconnect" between the patient and the medical system.

It's all too big. (I could say the same of government. Education. You name it. Almost everything and anything. Even the grocery store.)

Add to this that our MDs used to be the Marcus Welbys. No, they couldn't save us from much of ANYTHING but it was a comfort that there was only ONE KIND of dementia then and it was called senility, and a comfort that only one man (yes, usually a man) followed us from cradle to the nursing home.

If Marcus couldn't help us as much as the specialists of today to whom we are tossed like so many bones, he was at least THERE, seeing us in the office, in hospital, and even at home. It was a comfort. Because that young Hospitalist with his or her head stuck up the computer????? He or she doesn't know us from ADAM, right?

Between our EXPECTATIONS and REALITY is where STRESS lives. And I am afraid it is now about 60% stress in anything at all these days.
I never have the answers to your complex questions, Need. And I surely don't now.

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I remember Marcus Welby. Yep, he is certainly a breed from the past. I miss that type of personal connection in a doctor/patient relationship.

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Ah yes, the old time family doctor. Growing up, my parents doctor lived at the end of the block, and he took care of me, too. I don't there was such a thing as a pediatrician.

One day when Mom was walking with me, I was probably 5 years old, the doctor was out in his yard and he noticed I was walking pigeon-toed. He called out my Mom and I guess had her buy me a pair of "corrected shoes" which I wore for many years, which looked like regular shoes. Just thinking, today's doctor probably would never have noticed that because the nurse leads us into a room, the doctor never sees the child walking.

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I didn’t go to a ‘pediatrician’ either. It was common for the entire family to go to a family doctor.

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My husband has Parkinson’s disease, diagnosed 7 years ago and he takes levodopa, max dosage now and apparently that drug is responsible for increase of melanin, resulting in melanoma.
For decades, doctors have observed a link between PD and melanoma, studies consistently show that having either Parkinson's disease or melanoma more than doubles risk of developing the other disease.
Now he was diagnosed with that as well.
Either taking levodopa and cancer is going to get worse or not taking it and motor skills get worse.

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Evamar,

I am so sorry that this has happened to your husband.

My mom also took levodopa for her Parkinson’s disease. She lived to be 95. It was so disheartening to watch her health deteriorate over the years.

My heart goes out to you and your husband.

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We have to tell our doctors our complete medical history, including all of the medications that we are taking, even over the counter medications in case there are any interactions that we have to be concerned about.

I have severe allergies. When I was tested by Tulane Medical Center years ago, the results were that I was allergic to everything except for two things.

My brother with serious heart problems has an allergy to bees. His allergist prescribed an EPIPEN for him to use. When he told his cardiologist about the EPIPEN, the cardiologist said that he couldn’t use it due to interfering with his heart condition.

All sorts of circumstances can complicate things when taking meds.

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Thank you.
We live fairly normal life as my husband is very independent type and he has no dementia at all, so lots of things he can do and enjoys learning and maintaining interest in many things which takes him away from pain, which is more and more a problem, his back and neck even with 2 surgeries last year.
We used to do lots of things and traveling was big thing, more than 40 trips together in less than 20 years, we managed to go to Mexico this winter for one month, however, sad to say I know it was our last trip together.
It is good thing when he was diagnosed 7 years ago, (probably had it before for at least 2 years), but, we lived and enjoyed a lot, did not pay too much attention to this cruel disease, as it would not change anything.
Sometimes I think a quick trajectory of disease is so much better than suffering forever, yet, we all want LOs to live longer. It is a struggle.

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It sounds like you have many wonderful memories with your husband. He sounds like a great guy.

I do agree with you that lingering with a disease or illness is extremely difficult. I hope that will not be the case for him or you.

I wish you peace as you continue to care for your dear husband.

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I have a spreadsheet with columns for all of my meds, dosage, start date, doctor’s name, etc.

I also list all of my allergies/reactions to all meds I’ve tried and quit.

The third section lists meds that I’ve taken in the past, and what they were for.

I keep a copy of this list in my purse, and hand a copy to the med tech that begins each appt. They are usually VERY thankful.

The spreadsheet is really helpful in stressful situations,

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Very smart! My husband has done this too. I try to as well.

We can’t rely on our apps that we install from our portal. My daughter has found errors on her app that she had to inform her doctor of.

So many people have had adverse reactions to treatment, from mild reactions to severe. How have you dealt with this situation?

13 Answers

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