Nope. No Way.Never again!: After today I am not... - LUPUS UK

LUPUS UK

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Nope. No Way.Never again!

littleeffie profile image
18 Replies

After today I am not going to ignore my gut instinct and listen to specialist consultants when medication is concerned.

I have previously posted about my sensitivity to a lot of meds so questioned and double checked when asked to try Cymbalta(duloxetine) ,a new one to me and then pregbalin again which I have reacted badly to before.Eventually I agreed to try the cymbalta as the nerve pain from CRPS is so excruciating and I was assured it was not of the same ingredients of the amytriptilene and alike which I also adversely reacted to so left it until the weekend so nothing planned and no driving to be done.

Took tablet and a little later felt dizzy,tired and sweating ,well ok that's to be expected. Then the nose bleeds followed by itching ,redness,trouble breathing and then my lips, mouth, eyelids,eyebrows and tongue started to swell as did my hands and feet .i had already taken my antihistamine but took another one.Then I started to be sick violently followed by dioarreah which was actually probably the best thing to happen as it helped remove some of the hideous med from me.I then quickly took another antihistamine knowing I had probably lost the previous being sick and then just lay on the bed had a scary moment where I nearly choked on my tongue as so swollen and thought that's it! Enough is enough. My hubby who is brilliant and understanding wanted to call for help but I said I would rather just lie there and die in my own bed than spend one more minute in a hospital. Yeah totally stupid attitude but I by then was twitching felt poleaxed and every time I tried to stand up the floor seemed like that in as fun house where it keeps spinning.I am so glad you couldn't see me as I looked like somebody very drunk who had been in a fight and then fallen over in a nettle patch.I didn't go to a&E just roughed it out knowing the second I passed out hubby would ignore my request and call an ambulance. Poor him he worried sick.I am now lying here with a lot less swelling in mouth and tongue but eyebrows still look fat and hands and feet are going back to normal but the headache and burning eyes are horrid but improving.

Not just on hear to moan but to suggest to all out there if you are prescribed a new medication try and take it in a morning or/and when you have company as if I had taken it at night or on my own with this reaction I might have not got through it as hubby had to stop my choking on tongue so good we were both awake.

Well I know what they can do with the next prescription of demon tablets.

The pain is awful but it isn't killing me yet.

Goodnight folks ,take care and try not to imagine me with blooded nose swollen features red rash ranting and raving wobbling about like a drunk then lying there cussing with the equivalent of a really bad hangover(from the dim and distant past memory)

Effie x

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littleeffie
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18 Replies
Whathappned profile image
Whathappned

OMG

Do you not think you need to get a GP to do a visit. I realise you don't want to go to hospital but you are definitely having a full reaction and need checking and possible further meds to control this reaction. It may not be over get someone to come to you please!

littleeffie profile image
littleeffie in reply to Whathappned

Many thanks for concern and I know I should have had medical intervention but as last time I had a reaction the emergency docs tried to give me steroids and I react badly to those as well so luckily I woke up this morning after a very shaky night.I am going to walk in centre today to get checked now I have my wits,despite a little fraying,about me to what drugs I can't take to remedy any reactions.biggest worry is effect on my liver as borderline probs there already.

Again thanks and I strongly agree anybody having any reaction to meds to get urgent medical attention.

AnnNY profile image
AnnNY

I had a similar reaction, but less of an allergy. My hands were shaking, my feet were freezing, I was completely dizzy. It was night, and I just ran to get into bed, and hoped I woke up. Better in the morning. Tossed the whole bottle and said, "I'll never take that again." Some people say they are helped by it.

It sounds like you have a combo bad reaction, an allergy, and a reaction to the way they drug worked on your neurotransmitters.

Kazunlocked profile image
Kazunlocked

Are you able to access a Pharmacist to go over your drug list & advise as a second opinion next time you are asked to try something new? Not sure how the U.K. system works but in Australia our Chemists are fantastic & often more knowledgeable on drugs & interactions that the G.P.'s Best Wishes to you. Kaz xx

littleeffie profile image
littleeffie in reply to Kazunlocked

Hi and thanks.

I checked with pharmacist who said possibly some dizziness and fatigue.You obviously have much better informed ones where you are.

Take care x

Barnclown profile image
Barnclown

Dear effie: how are you this morning???? I hope things have settled down enough for you to feel you're mainly over this

Reactions like this one are a truly dangerous, especially for those of us who are hypersensitive. and you're so right to describe this in detail: we all need to stay wide awake to this danger & to keep our wits about us. The meds we're prescribed are serious, powerful pharmaceuticals. Your point is vvvvv important: when trialing a new med, have a reliable, practical, healthy companion at hand (ie mobile & capable of driving....maybe even of carrying you to the car & on to A&E, but at least of talking sensibly on the phone to emergency services) and be ready to act reasonably at short notice should things go wrong

I'll never forget the day when I was 16 and my whacky mother decided to try a form of the B vit niacin out on me (she was into supplements and never shy about experimenting...this is the woman who kept my infant onset lupus diagnoses secret). It had a HYPER reaction: pretty much like the one you're describing. Scared my whole family BIGTIME. Even a simple thing like the wrong vitamin supplement can do this to you

Please let us know how you are this morning

XO🍀🍀😘😘🍀🍀🎃👻

PS a lupus buddy of mine sent me this TED Talk last week...it links in with this subject

Why medicine often has dangerous side effects for women

ted.com/talks/alyson_mcgreg...

littleeffie profile image
littleeffie in reply to Barnclown

Morning or thereabouts!

Yuk that was not one of my better experiences.

Don't think I am in Hubby's good books today for refusing hospital but he does remember how they argued with him and me last time this kind of reaction happened thinking they knew best.

Ah well at least I am still here to say hello but feel a little ho hum about future of nerve,neuropathic pain with no possible pain reducing meds.It has been so intensive lately or wouldn't have even considered the trying of these meds .I had actually said I would go ahead with the stellate Ganglion nerve block where they inject through front of neck but after this episode ?????

I do wish these professionals would take concerns a little more seriously and find a way of doing chemical reaction on blood samples and the like to see if system tolerating occurs in a lab situation before risking organ damage or worse.

As we all know we are individuals and one tick box does not fit all.

Going to get checked out at gp so get back to you later.

Take care my friend x

Barnclown profile image
Barnclown in reply to littleeffie

👍👍👍👍😘😘😘😘🍀🍀🍀🍀

misty14 profile image
misty14

Hi littleeffie

So sorry to read what a terrible reaction you had to Deluxitene!. I had similar with it as it gave me Gastro enteritis but not as badly as you and I'd taken it for a week!. It made me so ill and it's cruel when we need help from excruciating nerve pain!. Sorry you can't take Pregabalin either like me. It's much stronger than Gabapentin and gets into the body quicker!. You must be terrified of drugs as they give you such a strong reaction!. Hope you are better today. Healing hugs. X

littleeffie profile image
littleeffie in reply to misty14

Hi misty

I think it was the timeframe which surprised me the most.I have heard of people taking it for days and weeks before showing sensitivity so only a few hours before onset was a definitive whammy.Just glad to wake up this morning.

Thanks for reply and hugs

Take care x

misty14 profile image
misty14 in reply to littleeffie

Hi Littleeffie

Hope your feeling much better today and you have a good week. I had the same quick reaction trying Pregabalin. It's frightening what one pill can do isn't it?. I wonder if it's because we have an auto- immune illness our bodies don't recognise the substance we're introducing and reacts!?. Take Care. X

littleeffie profile image
littleeffie in reply to misty14

Morning misty

Feeling more me today definitely. I had a very similar reaction to pregbalin a few years ago which is why I couldn't understand them wanting me to try it again hence the cymbalta prescription .I have kept being told that this sudden dramatic reaction doesn't happen with these type of drugs and it must have been a coincidence but I knew they were wrong and have now heard from enough people having similar reactions to put them straight.

Thanks for reply and wish you a good week x

Too late! I imagined worst! LOL, I totally understand you. I will not budge on my instinct either. I just had a bad experience with prednisone and prior to that with NAISD. With the latter drug when I went to walk the room was spinning as if I was on a very fast merry-go-round! Being claustrophobic, this was bad for me I almost fell down.

I will tell you all something that I didn't want to share out here. Trust me when I tell you I know what I am speaking about. I use to work in a psychiatrist office and I learned more than I anticipated working in those offices (I actually worked for a group of psychologists and one psychiatrists on staff & then later I worked under two psychiatrists) , one of my majors is psychology. The pharmaceutical industry are demonic, they give away free drugs, and I am speaking of millions of dollars of freebies, each day to the offices of psychiatrists, psychologists, if there is an psychiatrists on staff and now even medical doctors, so that they can ensure that we (the patient) are using their drugs. They also bought us lunch each day, no kidding, I was the one who answered the phones and took free lunch orders each day (I always ordered pricey lunches:) There are deals being struck behind closed doors that the patient is totally clueless of, and sadly it is no different from a drug lord or kingpin making deals to get people hooked to their poison.

Don't get me wrong, I realize that for some things we all are going to need medicine, such as the case with having an infection, you will always have to take an antibiotic to get rid of the infection, so far. But, you'd have to see these guys in action to know what I am speaking about. It's very very scary, especially if you are observant as I am. The first time I ever worked for a doctor I was there only two weeks, before I figured out how the games were played and I was afraid. Just as I would have been afraid if I ran across a street thug and figured out his game of wheeling and dealing. The drug Lord is the pharmaceutical, he will never do the deals directly, he instead hire pharmaceutical representatives who does all of the running for him/her. It is a crooked business if ever I've seen one, and doing all with a license!

looked into the prescription drug adderall last night, it is one my daughter unfortunately is taking. Do you know this drug is the synthetic version of meth! The manufacturers are from Switzerland and they have recently been sued for big money, but that doesn't phase this industry. You know why, because as long as they have hooked and loyal customers they will make ten times what they lose.

Stick with your guts woman, you are wise to do so!

windless22 profile image
windless22

Hi going day once Epi pen needs sourcing for you urgent attention that's most serious drug reaction whether u had bad experience at hospital is not as important as your life.

In such instance staying home serious bad.

No.matter how feel from before my spouse has such reactions if I'd not hot ambulance he would had heart attack died from same reaction. I was thanked by Chrons dr for acting fast do you realise once you had such reaction the next one will only get worse. The dr should never given you drug.

Read ingredients

Certain drugs below same line of drugs this was explained to me by chrons special dr so any reaction to one in that group would rule out rest.

So do understand how feel re bad treatment before making them aware.you must now carry a medication alert bracelet necklace which inside small list drugs allergic to.

Any hospital admissions a red bracelet of I'd for allergies.

What type antihistamines you see in hospital they would given iv antihistamines.

In your case no steroids.

littleeffie profile image
littleeffie in reply to windless22

Many thanks and do realise today I should have got help and lucky to wake up this morning.

Sorry to hear your hubby had similar experience.

Don't do red wristbands in my area anymore and definitely going to get I'd bracelet.

Got to get it on records that no means not again.

Take care and thanks for reply

AutumnSun profile image
AutumnSun

Dear Mother of God!!!!!!!!

You've been to hell and back Effie! Poor thing. Big 👍 to your Hubby for being so understanding.

All my very good wishes to you both and a big gentle hug to you.

Just take care, OK?

Xxx

littleeffie profile image
littleeffie in reply to AutumnSun

Thanking you for reply and hug it is !much appreciated. X

Alison-Brown profile image
Alison-Brown

How scary for you. if you had called an ambulance, could they not have given you an antidote? I only ask as I had a horrendous reaction to Maxalon once and A&E dr gave me a jab through the butterfly in my hand. It was wonderful, I was high as a kite, all on the NHS.

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