Can't tolerate meds. Frustrating

[kangaSue]

One of the drugs I cannot tolerate results in an adverse reaction within 20 seconds. That is FAST. The drug reaction is also in line with a known side effect.

@alex3619 I don't know about the reliability of it but there's a company in Oz offering genetic tests which determine how your body will cope with some meds.
https://www.mydna.life/our-test/

 

[Invisible Woman]

Thank you for your reply. But you also can't tolerate more then a crump and the beginning?

For some drugs even the smallest dose provoked an immediate reaction. That was why my doc thought it was worth trying drugs in liquid form where possible.

I also find that even if the initial reaction to a small dose was quite mild, it was cumulative so by the 3rd dose I would be really suffering. This is why I leave large gaps between doses initially. I first test I can tolerate the drug in sub clinical doses.

My body also seems to somehow remember: so if I try a drug and have a tiny reaction then the next time I try it the reaction is much bigger. Even trying another drug of similar type too soon after a reaction will trigger a much greater reaction than before. That is why I leave 3 months between having had a reaction and trying again - it takes that long for my body to desensitize.

To be honest there are just some meds that I no matter how I try I just have to accept I cannot tolerate them at all. This includes the migraine medication that was really effective for me prior to developing ME but now makes me extremely ill.

I hope that's of some use.

 

[slysaint]

I think you will find this symptom on various lists of ME symptoms. ie adverse or unexpected reaction to a lot of medications.
I have had the same problems you describe with a number of pain medications, cortisosteroids, anti-depressants, anti-histamine, sleep meds, etc also alcohol, cannabis.
Haven't told you anything that'll help you but you can know that you are not alone with this problem!

 

[Grigor]

@Grigor my doc gives low dose IVIG to those who cannot tolerate the treatment meds
xo

Really? Wow. And what does this do for you. Or would it do for me? Interesting. Speight also gives that to patients.

 

[Grigor]

One of the drugs I cannot tolerate results in an adverse reaction within 20 seconds. That is FAST. The drug reaction is also in line with a known side effect.

Many drugs require activation. I suspect I am a hyper-activator for some drugs. That means that a micro-dose is like an overdose. I always test new drugs at super low doses first. Crumbs. A crumb of that drug I mentioned, mirtazepine, knocked me out for four days, as in unconscious/sleeping.

If your symptoms are more ME related, or POTS related, then it might be something else. Or not. One thing I have repeatedly noticed is I get mild adverse reactions from NSAIDs, and anything up to severe reactions to most drugs that affect the vascular system.

Most drugs, and many supplements, and some supplement additives, mess with many biochemical pathways in the body. Its very hard to determine exactly what they are doing when something goes wrong.

Sounds very very familiar.

 

[Grigor]

@alex3619 I don't know about the reliability of it but there's a company in Oz offering genetic tests which determine how your body will cope with some meds.
https://www.mydna.life/our-test/

Interesting, did you get to try it yourself?

 

[Grigor]

For some drugs even the smallest dose provoked an immediate reaction. That was why my doc thought it was worth trying drugs in liquid form where possible.

I also find that even if the initial reaction to a small dose was quite mild, it was cumulative so by the 3rd dose I would be really suffering. This is why I leave large gaps between doses initially. I first test I can tolerate the drug in sub clinical doses.

My body also seems to somehow remember: so if I try a drug and have a tiny reaction then the next time I try it the reaction is much bigger. Even trying another drug of similar type too soon after a reaction will trigger a much greater reaction than before. That is why I leave 3 months between having had a reaction and trying again - it takes that long for my body to desensitize.

To be honest there are just some meds that I no matter how I try I just have to accept I cannot tolerate them at all. This includes the migraine medication that was really effective for me prior to developing ME but now makes me extremely ill.

I hope that's of some use.

Yes. Thank you. It's good to hear. Not alone haha. Frustrating. Cause some meds could help.

 

[Daffodil]

Really? Wow. And what does this do for you. Or would it do for me? Interesting. Speight also gives that to patients.

It is supposed to give the immune system a boost. I honestly do not know the details but I have gone from totally bedridden to 40 % functioning on this doctors treatment (which consists for antibiotics and other things)
xo

 

[Thinktank]

@Grigor my doc gives low dose IVIG to those who cannot tolerate the treatment meds
xo

Is it IVIG you are using or SCIG (subcutane injections?)

 

[kangaSue]

Interesting, did you get to try it yourself?

No, I haven't.

I don't have ME/CFS so my result wouldn't help any of you guys but I tolerate very few things too with just having chronic idiopathic GI dysfunction issues and that goes for drugs,supplements and herbs, vitamins and minerals and the majority of foods now including the alternatives of tube feeding formulas.

I was hoping to find some answers here, still looking.

 

[Daffodil]

Is it IVIG you are using or SCIG (subcutane injections?)

I'm taking it subQ

 

[justy]

Really? Wow. And what does this do for you. Or would it do for me? Interesting

I take micro doses of SCIG as above - I cant tolerate bigger amounts as I get reactions to them, but even at a teeny tiny dose it stops me from being bedbound.

Your reactions are just like mine - I have MCAS - Mast cell activation syndrome - just diagnosed about 18 months ago.

For me it causes atypical anaphylaxis to most drugs and herbs. It can be caused by lyme disease, but of course hard to then treat the Lyme. My Dr is the same as Daffodils - we are trying to address it.

after about 12 months on three meds for MCAS (and over a year of trial and error finding ones and brands I could tolerate) I am now having slightly less reactions - almost no food reactions apart from itching and no reactions to smells. Drug reactions are still a big issue for me - injected drugs are worse for some reason, even if done sub Q.

 

[Grigor]

I take micro doses of SCIG as above - I cant tolerate bigger amounts as I get reactions to them, but even at a teeny tiny dose it stops me from being bedbound.

Your reactions are just like mine - I have MCAS - Mast cell activation syndrome - just diagnosed about 18 months ago.

For me it causes atypical anaphylaxis to most drugs and herbs. It can be caused by lyme disease, but of course hard to then treat the Lyme. My Dr is the same as Daffodils - we are trying to address it.

after about 12 months on three meds for MCAS (and over a year of trial and error finding ones and brands I could tolerate) I am now having slightly less reactions - almost no food reactions apart from itching and no reactions to smells. Drug reactions are still a big issue for me - injected drugs are worse for some reason, even if done sub Q.

Interesting. Is your doc DML? I do better on injecting B12 then sublingual.

 

[justy]

Interesting. Is your doc DML? I do better on injecting B12 then sublingual.

Yes - DML is my Dr. I do better with some meds IV, thus bypassing the gastrointestinal system and others, like SCIG and local anaesthetics I react to.

 

[Grigor]

Yes - DML is my Dr. I do better with some meds IV, thus bypassing the gastrointestinal system and others, like SCIG and local anaesthetics I react to.

Yeah B12 injection work better for me as well. I'm too ill to get to him and too poor

 

[justy]

Yeah B12 injection work better for me as well. I'm too ill to get to him and too poor

sorry to hear that. I had to raise funds by having a go fund me page, friends did some sponsored events, we sold our house and I sell stuff people donate to me on ebay, when I am well enough. Sometimes I have not been well enough to go, but when I do my husband drives me, laying down in the car - I always crash when I gte back.

 

[Thinktank]

The last weeks i've been trying a few meds, hydrocortisone being the latest failure.
Just 5 mg in the morning made me a little bit snappy. Another 5mg around noon made an as...... and i blew up to my girlfriend about a very minor issue which i would have laughed off if not on this crap.
10mg hydrocortisone is really nothing, it compares to 2.5mg prednisolone.

I tried 0.5mg LDN for a few days last week. It increased my brain fog like when my ammonia runs high.
It gave me this fake energy, much like when i react allergic to something, then there was this constant adrenalin rush and ofcourse the insomnia.

Valtrex is also something i've tried a few times over the past weeks and even 1/8th of a tablet makes me feel restles for a whole day.

This hypersensitivity to medication is really growing old, why can't i take anything anymore?