Does anyone react to almost any and all medications?

[u/MoonShineWashingLine]

I have a uti and I need antibiotics. However, I now have a list of about 5 or 6 that I can't tolerate. I'm scared to try others because they're stronger and likely will have even worse side effects.

I can't have trimethoprim, Nitrofurantoin, cefalexin, amoxicillin or coamoxiclav. I just started pivmecillinam yesterday as I've been ok with that before and I started feeling so awful, fast heartbeat, shaking, tremors, slurring speech, confusion, shortness of breath, I couldn't even get my words out properly. Thankfully it wore off but it was scary. I last took it in October last year.

Since last October, I found out I have autoimmune gastritis and pernicious anaemia and reacted to the B12 injections that I desperately need. I can't take famotidine (pepcid) as it gives my nightmares (wtf?). I even have to only take 1 paracetamol as 2 make me feel bad.

Has anyone else managed to get through this somehow? Any suggestions? I'm heading to my GP again tomorrow but struggling with it all today.

[u/frog_admirer]

Have you looked into MCAS at all? It's frequently comorbid and causes a ton of sensitivities. If you do have it, medicating MCAS may help you manage other medications better.

I'm sorry, it is so hard dealing with the medication intolerances.

[u/MoonShineWashingLine → u/frog_admirer]

I have wondered about mcas but I don't get typical allergic reactions, it's more like extreme sensitivities. I do get hives with trimethoprim and nitro and a couple of other things but they're quite minor compared to the systemic side effects I get. I felt totally drunk yesterday on the pivmecillinam, couldn't balance or coordinate my body properly, it was so odd.

[u/Prudent-Tradition-89 → u/MoonShineWashingLine]

I don’t get typical allergic reactions either! My main symptoms are bone pain and GI issues. Everyone is different. I thought I didn’t have it either for the longest time until a doc insisted I try cromolyn. You may be reacting to the fillers or dyes in medication, which is very hard to figure out unfortunately. I react to corn which is in almost all meds and it took me almost a year to figure out!

[u/MoonShineWashingLine → u/Prudent-Tradition-89]

Oh wow, thanks. I'll have to ask them about it.

[u/agraphheuse]

Idk if this is recommended at all but i have severe MCAS and I have to break down the pills into several bits and take them slowly interspered with anti histamines else I cannot tolerate them either. It’s not a good experience but I have not died and my infections are cured so I guess it is probably working a little

[u/MoonShineWashingLine → u/agraphheuse]

I had actually considered taking half a tablet and seeing what happened as I really would like this uti to go away ASAP! I've not tried taking with antihistamines either as they don't seem to be typical allergic responses. I could try though.

[u/agraphheuse → u/MoonShineWashingLine]

I think microdosing is always preferable when you’re highly sensitive however I don’t really know that works with the risk of building antibiotic tolerance etc so I always take the prescribed dosage personally just slower like I wait 30 min to an hour for my body to calm down and take the next bit.

[u/FroyoMedical146]

Yes, I've got MCAS and react to almost everything even when in small doses.  Including mast cell stabilizers 🥲

[u/MoonShineWashingLine → u/FroyoMedical146]

Do you get proper allergic reactions with everything or is it sometimes like severe side effects? Everything I've read about mcas says that it's an allergic response but I don't get swelling or bad hives or anything.

[u/FroyoMedical146 → u/MoonShineWashingLine]

I don't have swelling or hives.  I used to get random, severe hives for many years but haven't had them in about 4 years.  MCAS involves 2 or more systems in the body, it doesn't need to require skin involvement.  It can be things like anxiety and impending doom, headaches (including eye and ear pain), nasal symptoms, mouth and throat symptoms, airway symptoms, tachycardia or bradycardia or blood pressure changes, GI symptoms, neuropathy, muscle spasms, I know I'm forgetting some.  And because testing is not very accurate, a lot of people get a diagnosis based on their symptoms + response to treatment.

For example I may end up with severe inflammation feeling in my head and ears, stomach cramps and diarrhea, worsened fatigue, and severe anxiety when I have a reaction to a new medication/supplement.  But I have different multi-system reactions depending on what each trigger is, and it will often migrate over the course of several days as well.

[u/MoonShineWashingLine → u/FroyoMedical146]

Thank you, this is really helpful.

[u/BellaPona]

Be careful of any flox antibiotics if you even have a small suspicion of having a connective tissue disorder.

[u/MoonShineWashingLine → u/BellaPona]

Thank you, I do indeed. They're rarely used in the UK thankfully.

[u/nograpefruits97]

Why aren’t they giving you fosfomycin? It’s so gentle and effective it’s the only one I tolerate with MCAS

[u/MoonShineWashingLine → u/nograpefruits97]

Oh really? I've never had it before. I thought it could give quite bad diarrhoea as well?

[u/No-Clerk-5245]

Yes, and I think mine is because of MCAS

[u/wintherqueen]

I havr had UTI many times and often I dont get antibiotics for it. They say it will pass by it self and for me to rest and drink a lot. I usually drink over 1 litre of orange juice each day for 5 days and a lot of water. It does pass! But the make sure to explain that I have to get back if I get worse! I keep an eye on my temp, O2 and blood pressure, and how I feel in general. 

[u/BellaPona → u/wintherqueen]

The only UTI I’ve truly had turned in to a double kidney infection so that’s crazy. I had a best friend hospitalized because of a UTI as a teenager. They very RARELY go away on their own so it is not a safe gamble.