Humira & me...... And the impact when it goes very wrong 😞

[Issybee]

Hi I'm new to the community and just wanted to post about how important it is to understand your drugs and the warning signs you just can't ignore. I have been on several drugs for my RA and I'm currently back on humira. In April 2014 while holidaying in France with my husband, 8 year old daughter & 8 friends I became seriously poorly. I was feeling poorly the run up to my holiday, sweating, choking on food,feeling full all the time and immensely tired ( which I thought was my fibro,RA or ME) I am a very lucky lady indeed as my husband & daughter had gone skiing for the morning and I was left in bed as we where going to the doctors later on. It all went wrong! I say lucky as my husband & daughter came back early and it most certainly saved my life. My husband found me in bed with a very weak pulse and grey. I was taken by ambulance to a medical centre at the foot of the mountain where again luckily for me a French doctor called the air ambulance as I was in a bad way and in cardiac arrest. I was flown to one hospital who put me on life support but they could not deal with me as they had no idea what was wrong so I was transferred to a huge hospital 2 miles away. My poor husband was told he had to go and get my long list of meds especially the RA drug info he was told not to stop as it was a matter of urgency. To cut my drama short, I was in a coma for 7 days and in France an extra nearly 3 weeks! What I had was mycoplasma pneumonia, septicaemia, my kidneys failed and my heart was failing. I am one very lucky lady all thanks to the French doctors and my husband. The reason I became so ill was I had they said developed a chest infection and due to taking humira and not seeing a doctor it developed over 3 weeks. The reason I have shared my story is I am one of those people who always seem to be at the doctors and was sick of going. I must point out that I was on morphine patches which didn't help as this just helped in masking the problem. What I have learned is , family is very important and so is getting to grips with having an understanding of the drugs you take and never feeling you can't go and get checked out with the doctor or chatting with people who understand the drugs and the issues you need to check out. Another big thing if going away to have a up to date list of all the medications you take (I now wear a identity medical bracelet with these on ) Sorry for the long post but I would hate anyone and there loved ones to go through that experience. This as taught me a very big lesson listen to your body 😀 ps I am back on humira now x

[Matalow]

MAny thanks for the warning, you certainly are a lucky lady.Im waiting to start Humira I carry a card in my wallet but a medi tag sounds sensible.

Pleased it all worked out.

Regards Mike

[Jora]

That's a scary story and many thanks for sharing it. What a good thing your husband was so on the ball. Jora

[Livingston]

A real cautionary tale.

When I was nursing and admitting patients to hospital I was frequently amazed by how ignorant people were about their medication - to the extent of not knowing what it was called or what they were taking it for. I wasn't hoping for in-depth pharmacological knowledge, just some very basic stuff that would let me get them written up for what they needed.

Good on your husband for being so clued up.

[hatshepsut]

A lesson we should all take to heart, thanks for sharing your experience. Hope you are now well, and the humira is doing its job. M x

[nomoreheels]

Well, what a first post! Welcome Issybee. You're a lucky girl aren't you?! Not for the experience but for coming through such an awful ordeal.

I don't think anyone with a chronic disease should consider themselves a doctor botherer but fully admit I needed to educate my h to appreciate how important it is for him not be overly concerned if his GP would consider him to be one. But I think (& generalising here you male members!) it tends to be the men in our life that resist going to see their GP when at times maybe they should.

I carry a list of my meds & doses in my diary (yes I still carry a diary!) & my h's as I was caught out when I'd to call for a paramedic & he was blue lighted up to A&E. He has both his & mine on his iPhone too.

[cathie]

How sad to hear that you've had what is a very rare reaction. I've been on different anti- tnfs since 2002 and have only ever seen one person having a reaction and then the medical team were there in a jiffy. I was strangely reassured. I agree about having a list of medications to give out, apart from anything else it can save precious time in routine appointments. Having it on phone is a great idea and I'm going to do that!

I hope you're feeling ok now

[Ruth273]

Thank you for sharing your story Issybee.

It brings home to everyone the care we need to take in self monitoring and having the list of medications to hand.

T

he advice on having a medical bracelet is a good one. I know my mother wears one and it has been invaluable. Myself I have my medications listed on the ICE form on my phone, as this goes everywhere with me and I am not allowed to wear 'jewellery' at work due to health and safety.

Take care

Ruth

x

[Issybee]

Thanks for the replies. if my story can help people then I'm happy. I'm ok like everyone have good & bad days. Hope everyone is enjoying their Sunday xxx

[bassiefromholland]

What a story, and you are so right, if we feel not Well we most of the times think it is because of the RA. But sometimes it is not the case.

I wish you all the best, and we have to listen to oud body! And take with us a list of medicines!

XxxBas

[carotopgal]

Thank you for sharing you harrowing story. That's so frightening. I'm glad that everything worked out and you got better.

[flowers89]

Glad you ok hun very scary story,x

[Metal-legs]

Thank you Issybee for sharing your scary story, We read about the side effects of these drugs but to hear your own personal story is very powerful and will help a lot of people educate themselves. So glad you have come through it ok and pleased you are able to get back on Humira.