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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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@ccshel yes there is a lot of gelatin in many things. The lab normal is 0.3 and my level was 1.0. The GI doctor that ordered the alpha gal level counseled me to avoid mammilian meat, gelatin, etc. However, the immunologist said she isnt concerned until the level is 20 or higher. I do carry an epi pen, benadryl elixir ampules, albuterol inhaler. Luckily, I have only anaphylaxed twice. Both times after receiving antibiotics, which happened in the 90’s. Other reactions are electrolyte abnormalities which arent considered histamine related. The immunologist has been more concerned about mast cell activation syndrome and the addition of cromolyn really helped with the nausea andin the last couple weeks, my BP seems to be more stable and havent had dips in the 70’s; so, feeling hopeful.
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1 Reaction@legeke
Medicine capsules contain gelatin. Alpha gal is allergic to gelatin as well as meat
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2 Reactions@doubll I had never heard of it before you mentioned it. I did look at the information and I don't think it is what I have going on. I will mention it to my NP when I see her just in case. I'd rather mention it and turn out wrong than to miss something important. The most irritating part I find, at least in my experience, is that doctors have a tendency to think if it is not anaphylactic and instant it is not an allergy it is considered a sensitivity and you can ignore those.
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2 Reactions@doubll yes, I have been diagnosed with mast cell activation syndrome. I also was positive for alpha gal.
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1 ReactionJust replying to make sure you’re investigating mast cell activation syndrome. My reactions from such things are greatly under control after taking things that deactivate mast cells.
If you’re not familiar take a look at mastcell360.com
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2 ReactionsMy sister and I both have this problem and we have found a Nurse Practitioner who will work with us however the big problem comes when we end up at the ER or hospitalized for any reason. We have found through trial and error that many of the meds we have issues with it's not the med itself. It is the inactive ingredients so every time we get a new med we have to look it up to see what all is in it. These include anything that starts with SULF (sulfa, sulfate, sulfites sufinyl, etc) and the other big one is povidone/crospovidone which is a binding agent used a lot but it is also used in the manufacture of man-made iodine. So if a med says Iodine in the ingredients it also has povidone. Lucky my new pharmacy which is Amazon pharmacy also double checks inactive ingredients because one manufacturer didn't have any of my problem ingredients but Amazon let me know they had 2 different manufacturers for it and made a note so I'd only get the other one. First pharmacy I had catch something like that.
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3 ReactionsThat is a great point that many people forget. Yes, I have done this. And now, I am being evaluated for eosinophilic esophagitis, which is an allergic/inflammatory process related to food allergens and can also lead to esophageal strictures if not treated. My understanding is the number one food is cows milk. I did an elimination diet, but didn't notice any changes; once I am evaluated, it may be dietary elimination followed by biopsies to see if there is any improvement. I am down to a couple more weeks prior to being scoped, then I will know more. My immunology and GI doctors are working closely to determine what all is happening and how to best treat.
Thank you for your input
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2 ReactionsI'm just curious if you've compared the inactive ingredients in some (or all) of the medications you are reacting to. It might be worth seeing a dietitian to go over the ingredients to see what they have in common (or an ingredient family) in common that is causing these reactions.
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4 Reactions@layla2011
Do you have access to an immunologist? I have had only 2 visits so far but she seems interested in figuring this out. And yes, I am also having terrible GERD too. I see GI in 2 weeks. I told my husband, if I am still left hanging by 1/1/26, I will be seeking care at a major medical center, even if I have to go out of state. The last 15 months, I cant say the care I have received has been helpful, as my BP usually isnt at goal. I am on last 2 meds unless there is a medicine in trials and I havent heard of any. I just developed low sodium from an old diuretic medicine I was on as I have always needed 3 meds to control my BP. I certainly understand your situation and if something positive comes from my evaluation, I will update this post. Best wishes you can find something. I did update my health care directives to reflect my situation, so my daughter doesnt have to make that decision—which would be to stop treatment and initiate hospice.
@layla2011 - hoping your prescribing doctor has an alternative blood pressure med for you?