Multiple medicine allergic responses
Didn't see any discussions regarding multiple medicine allergic responses. I am embarrassed to say, I am up to 24 allergic responses with medications. The allergic reactions are things I can't control such as high potassium, low sodium, noncardiac pulmonary edema. I feel like health care providers open the chart and see this, I get labeled as "crazy" and when I say I am starting to react to a medicine, noone listens. If I stop the med for my own safety, then I am causing a problem, even if my blood pressure drops due to side effects starting or I feel weak and sodium is dropping and is 130. I don't even want to use healthcare. It is exhausting advocating for myself. I was warned by a pulmonologist, my allergic reactions are dangerous because I rarely have a rash and therefore, treatment is delayed or felt not warranted.
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@legeke I am the same way. I cannot take any ant depressants. My husband check me into Chicago Rush which has an incredible mental health facility. He took me off of SSRis and then put me on an older drug, an MAOBI inhibitor. Within 3 days the depression lifted and then he put me on lithium. That was 2014 and I have been fine ever since.
@clevin3951 Thank you for your response. I did genetic testing for psychiatric meds after my dad passed and MIL passed within 7 days of each other. I needed some help. According to the genetic testing there aren't any antidepressants I can take without major adverse effects, but it also doesn't take into account how those meds respond. Luckily, it was a study and only $300 to find out I couldn't tolerate anything. Of course, there isn't a single test for the majority of meds that I know of, but I think that the metabolizer or poor metabolizer is how they came to that conclusion. Been working with an immunologist and initially, things were majorily improved and I felt relief that someone understood. Over the past 2 months, things have fallen apart, GERD return, episodes of hypotension are back with dizziness, feeling like I will pass out, weakness. Then this past weekend, I awakened hearing myself crackling, coughing and wheezing. Evaluated and treated for pneumonia with steroids (medrol dose pack with max steroid dose 24 mg and weans down each day for 5 days) and antibiotic. I can now, only walk about 100 feet before, coughing, wheezing, crackling. I am frustrated to the point where I am considering discussing with PCP to obtain out of hospital DNR, comfort care if anything further happens as I feel it is coming to that sooner rather than later. I contacted immunologist who said, "glad you got treated". I have a f/u with PCP supposedly in 1 week but they are out of office, so seeing another newby who won't have any idea and I dread trying to explain anything--why bother at this point? The reaction where you know the Dr. opened the chart and sees your allergies and auto labels you crazy happened with a cardiologist who dramatically explained to me why he was not the one for me to see because I have alpha gal and the hypertensive specialist is the one who could serve me better...except she isn't general cardiology. It just goes on and on...the closedmindedness and judgement and labeling without a word to me.
Thanks for listening and I am glad you are getting answers and I hope you get the medical support you need.
If you are crazy then I am crazier. I have 26 reactions on my alerts. I had a horrible horrible reaction in August from a Nuclear Stress Test and I have been working with six doctors including an Allergist Immunologist. You are probably a poor metabolizer of drugs like me. When that happen drugs may not work, you may have more adverse reactions and drugs may stay in your system longer. My internist insisted it was possible but my 4 specialists agreed. Look it up, We have met twice and reviewed all my alerts to make sure they are rated properly and correct. There are two new alerts added that say I am a poor metabolizer and I am never to have a nuclear stress test. I also have taken a DNA that states some of the drugs I cannot metabolize. I hope this helps!
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5 ReactionsHi @lisalucier,
That is so kind of you to remember the appt and check back. Prior to immunology, I saw GI due to all the nausea, Gerd increase along with the decrease BP. I tested positive for alpha gal and he also did a HIDA scan which your normal ejection fraction for the gallbladder is 35-65% I believe it was and my gallbladder ejection fraction was 0. Then on to the immunologist who said I meet criteria for presumptive MCAS (mast cell activation syndrome) given the repetitive episodes of symptomatic hypotension/pulmonary edema with hospitalization and then reaction in antibiotic while hospitalized at that time, plus GI manifestations, skin also with hives and a rash. Because I need 3 surgeries sooner rather than later, they call it presumptive and I had already started treatment with 2 of the meds back in June. The 3rd medicine was ordered and I am on my first full day of it and so far it had really knocked the GERD, nausea down. This is an older medicine and I have already had the issue that pharmacies can't obtain it and only was able to get a partial fill of 12 days worth which will get me to one day post the first 2 surgeries. It is also very expensive, even with insurance. My mail order company said they could get it but I am still waiting a) to see if they really can and b) how much it will cost thru them. I am hoping it works out med wise. Then, I have to decide..do I want to come off meds and do that actual testing or because I am doing so much better, let the diagnosis stand. The only benefit to getting a lab confirmed diagnosis that I can see is that if I do ok for awhile and then get worse again, the treatment would change. So far since I am on high doses of antihistamines and mast cell stabilizer, things are much improved with no hypotension and I have not needed any additional BP meds. Still have some fatigue but that is even getting better.
Thank you again!
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1 ReactionHi, @legeke - just wanted to check in and see when your immunology appointment you mentioned in July will occur? How are things going with your blood pressure, since you mentioned you were left with just one you tolerate?
Thank you so much for the support. I do have some good news/update. My hypertensive specialist is back in the office and called me at home and went thru my most recent medicine reactions. I was on 3 older medications because they are what I have tolerated and are the last 3 antihypertensive meds to try. I had to stop 2 of them, low sodium and one would randomly drop my BP 40 mmhg, dizzy, etc. The single BP med left doesnt really control me——110’s/60’s—160/100. She referred me to immunology but earliest appt end of Aug. Hopefully, soon I will have some sort of plan.
Thank you all for listening and the thoughts and prayers. I appreciate it and it does help to know others have had issues. I can do this one more time!
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1 ReactionThat's a good idea! I'll say a prayer for you that it turns out just fine for you. In the meantime drink a lot of water. It helps with blood pressure. I always drink a lot of water before I take my blood pressure and it's usually normal. Also look at the ingredients that are in the food you are eating. If there are preservatives and additives in the food, that could increase your blood pressure too.
I wish you the best.
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4 ReactionsI have decided to ask for a referral to allergy and immunology. I have some providers picked out that are in my insurance plan and will call tomorrow to see how long of a wait to be evaluated. I am choosing allergy & immunology over dermatology because I rarely have skin reactions. If I cant be seen in a reasonable amount of time, I will be contacting larger institutions to see what time frame they give me. I am out of options for blood pressure meds, so something has to be figured out before I end up in ER again—-which is no place to be if its a medicine reaction and you need an alternative med to control blood pressure. Or until I am told I am out of luck, there is no alternative. Regardless, I just need to know IF there are any options/treatments.
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2 ReactionsI have the very same problem..and the it's so frustrating.. just went thru it with antibiotics for a UTI.. I told them and then ended up back in ER 2 days later with a reaction worse that the UTI..I have learned to ask.. does this prescription go by ANY other name the hard way.. you're not alone in this!! I was shopping in Walmart and the greeting card rep (a lady about my age ..70 ..told me she was allergic to alcohol..and it was in a medication her doctor had been her on for years!! She lost all of her teeth.. what has happened to health care..?? Thank God Jesus is the Healer!! I'll pray for you!!
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