Multiple medicine allergic responses

Hi @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!

Hi, @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!

That'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.

I 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.

I 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!!

How terrible for you! That must be very frightening to have to deal with. You are smart to stop taking something when it obviously affects you so badly. Sometimes medicines have instructions about how or when to stop them. I react strongly to different medications also; not quite as many as you but still it's disconcerting. One thing that I have done is try and find food that will help what I'm taking the medication for when I react to the medication. For instance, lots of water or Gatorade will help with low blood pressure. Gatorade also helps with memory problems. My husband was given the wrong medicine when he had a CT scan. It affected his memory for a while but the Gatorade helped bring it back. I just did a lot of research online to find different foods that helped one naturally instead of taking the medication.

The other thing that helps a lot is prayer. Just talk to God and tell him your problems and ask for his help. It has worked for me many times. After all, he made you and he can fix you! I'll say a prayer for you also.
I wish you the best.
PML