update from colin what a saga

colinone

Hi Guys I am assuming your all up to date with me and dad, what a tale I have to tell you. You know I’m not to keen posting negative on meds and I am really sorry for this rather negative post involving Humira. However lets tell it like it is and it may help people to respond faster to medication reactions. First of all those cards they give you to carry when your on Anti TNF don’t mean jack **** because the only people who understand or recognise them or the drug is your Rheumy and yourself, its like the worlds best kept secret. Your GP knows nothing and I have yet to meet a casualty doctor who knows anything about the drugs. Been there now with Enbrel and Humira. When your backs against the wall and you tell the casualty doctor to contact the Rheumy Department and if its closed the sister on the Rheumy ward will be able to give you all the info you need. Ill decide what I’m going to do and ill look it up on the net first. What a crock of **** I choke to death whilst he piss pots round the net.
It all started on Sunday afternoon after taking the Humira, Throar swelled rather bad and real bad pains in chest, hard to breath and genral feeling of I’m about to die at any second. Anyway I never chocked and I’m still hear, Doctor said side effects of Humira no treatment and I was to discuss it with rheumy when I saw her in three weeks. Explained I did not think I could last three weeks told to go home and rest. Sweat pouring out of me like those night sweats but I was awake. Tuesday Afternoon went to GP throat still swollen pains in chest back and now vomiting, Flashes my card at him, I might as well have shoved it up his jacksy for all the good it done as he looked shrugged his shoulders saying well whats this. I was armed with a water sample and a quick dip showed I had a kidney or water infection but no medication as he thought it may not be a good idea as I was on humira. I’m choking in so much pain and can hardly get my breath. I’m sure its just the side effects of the Humira he says, I explain to him that whilst not coming from a medical background I am aware what the problem is and need for him to fix it. Come back in 7 days and bring another water sample he tells me. My wife explains in a little more detail how ill I am and the throat swelling is rather scary. He should be ok on PREDNISLONE and I will see him in 7 days.
(pm Tuesday Evening still cant breath properly back to Causality.
I remember very little apart from the words get him to resuss now. I drifted in and out of conscious for the next couple of days. Seems I had Acute pneumonia and a kidney infection to top it off. Dad has been visiting me from his ward what a turn about.
Anyway I’m home today and feeling better Dad getting stronger and stronger cant believe he has been visiting me lol. Poor kay left with all the running round again. Regarding the NHS and the Rheumy departments they need to get the information out to all the other departments, they need faster access to stuff they don’t understand, The most serious thing to happen whislt taking Humira is swelling of the respiratory system, end result death through lack of air. I was informed by the nurse that this can all happen in a very short space of time and the importance of seeking help as soon as possible. My Rheumy visited me on the ward on Friday. She told me that there was no doubt that Humira had its part to play in causing Pneumonia.

ritnew

OMG Colin how awful it's been for you and your family. I just wish these bloomin dr's would listen, we know our bodies.
I'm so glad you're feelong better now and how nice is it to hear your dad is getting better as well.
Did you see the news today about RA saying they don't act quickly enough to diagnose or to prescribe the correct drugs.

Take care.

Rita x

lindah

What the hell can I say.Good to hear from you but sorry about your latest conditions. It doesn't bear thinking about.
Linda H 8)

elnafinn

Echo - OMG Colin. Thank goodness you have posted here as to how the humira affected you. I am really sorry. You must have been so ill - I cannot believe the doc saying call by in 7 days when he could see how very unwell you were. I hope he is eating humble pie and has learnt something from this.

It really is frightening that we put our lives on the line with these medics if they don't know enough about drugs etc. Surely he could see you were so ill that he should have sought advice there and then from someone else.

Kay must have been demented with worry over you. Bless, your dad calling in to see you, both being in the same hospital.

I did wonder where you had gone and hoped it was nothing untoward as you are a "regular" on here. You were missed.

I am so relieved you are ok and thank you for posting all this information. It may well help others. It definitely sounds like a great deal more awareness has to be made to the medics about this drug.

You are a brave soul,

I wish you a much calmer episode, for a long time to come.

Luv

Elna

mash65

hi colin,i cant really add much as its been said.
im so sorry that youve been through such an ordeal.
i sometimes think these drs get there qualifacations out of a xmas cracker,pratts.
glad to hear both you & your dad are on the mend.
luv debsx

alicea

Hi Colin, sorry to hear of your terrible time with the hospital they really dont give you confidence , I bet you were terrified,. They will stand by and watch you die they dont listen. I went in with pain that was so bad i thought i was going to die .they put me in a corridor because i said i was on the atkins diet . It turned out to be burst appendix and then i got pnuemonia. They dont listen to a thing you say . i am really glad you are on the mend and your dad is doing better, all the best sandra

page35

What a nightmare
glad your getting better and your dad
page

denpen

Hi Colin
I have been on holiday and when I returned I noticed your absence on the site....wondered where you where....and now I know...Good Heavens above...The Good old NHS and our A & E Doctors strike again I must admit that absolutely nothing surprises me anymore with all the contact that I have had of late with the GPs and A & E Doctors, but to think our life is in there hands is a scary thought. Doctors dont have a clue about Arthur the syptoms and treatments, they dont realise the pain that arthur sufferers go through because they arnt specialist in the area to them its just "arthritis". Hope you are feeling well again soon.
Take Care
Denise.x

debatat

Colin, how awful, I am so sorry for you. I can only begin to imagine how frightening that must have been for you and your wife. Thank you for posting the info about it on here. Hopefully it will help someone else.

I hope you are recovering and that your dad and wife are okay as well.

Take care

Deb

angel1

I`m absolutely horrified to hear of your recent experiences Colin. I sincerely hope you - or Kay if you`re not up to it - have reported the doctors concerned. They should be taken to task.


Great news about your dad. I had this lovely image of the pair of you in the hospital ward, and I`ve been smiling ever since. Was it Fazakerley you were in?


Hope things start to pick up for you. Remember what I said before "You can`t keep a good Scouser down............Ange.

joanlawson

Hi Colin

I had noticed that you were missing from the forum, but assumed you were busy visiting your Dad. Little did I think that you could be so ill, and in fact, your Dad was visiting you!!

What a mix-up at the hospital! It sounds as though the right hand doesn't know what the left hand is doing, and you are in the middle practically fighting for your life. I hope you have told someone at the top about your terrible experience, in the hopes that they will get their act together in future.

You certainly are made of tough stuff, and thank goodness that you are feeling better now. Poor Kay will have been worried out of her mind too. I am so glad that your Dad has rallied round, and I send you my very best wishes and hopes that you will stay well.

Joan

frogmorton

Hello Colin
Blimey!!!!!
This is terrible!!!
This needs to change!
So very very glad you are ok :shock: :shock:
For Goodness sake - they are idiots! Are you going to complain (not for money) to try to get the system changed?? My frined whose hubby dies of cancer in sept has had GOOD and postivie changes made here, which will really help current aptients and their partners.
Of course prob like others I though you were with you Dad....what a star he is looking after you!!!
Kay desreves a medal too
Take very very good care now (are you off it?)
Toni x

moleymoo

Gee whizz!

I was just wondering this morning where you have been! Now I know. I am so glad you are feeling better now. So scary for you and for Kay too.

Kat xx

colinone

Thank you all for your best wishes for both dad and i. looking back i dont think you could invent a story like this let alone live it. what a scary time its been. I'm told it will be months before i'm back on my feet so bare with me if i dissapeer from time to time.
Regarding doing something about the situation with these type of meds. I'm not after suing and my Rheumy has already apologised although i believe its not her fault i just drew the short straw or some underlying reason as to why i dont have a good responce to anti TNF treatment. My Rheumy care is second to none, the problem i have is that the three main anti tnf drugs are not known or understood propperley by doctors outside Rheumy. Its not so long ago i had to explain to a doctor why and how depot medrone can alter or hide in the blood. At the end of the conversation he replied yes but its ok yours has come back normal its like banging your head on the wall. Yes i told him thats what it does but he could not get his head round it. I have made some notes and will try and start the ball rolling when i next see the rheumy. Once again thank you
Colin

suncatcher

was wondering where you were sorry to hear about all you troubles but glad to see you back on site joanne

joanlawson

Hi Colin

I hope you are feeling a bit better today after your nasty experience. I think all medical students should have to talk to people like you in order to learn how to deal effectively with certain situations. It doesn't inspire you with very much confidence if a doctor has to look something up on the internet, or if you have more knowledge than them about a drug.

As you said, you drew the short straw regarding humira, and I suppose these powerful drugs are bound to have side-effects, but you would expect the doctors to know what to do immediately if someone has a bad reaction.

I hope you will regain your strength and be back on form soon.

All the very best

Joan

mistywillow

joanlawson wrote:

Hi Colin

I hope you are feeling a bit better today after your nasty experience. I think all medical students should have to talk to people like you in order to learn how to deal effectively with certain situations. It doesn't inspire you with very much confidence if a doctor has to look something up on the internet, or if you have more knowledge than them about a drug.

As you said, you drew the short straw regarding humira, and I suppose these powerful drugs are bound to have side-effects, but you would expect the doctors to know what to do immediately if someone has a bad reaction.

I hope you will regain your strength and be back on form soon.

All the very best

Joan

Hi Colin
I have only just seen your post but I have missed your presence on the site. What a dreadful ordeal for you and Kay. I hope you are beginning to feel better now. The whole episode is so worrying, its good that you have brought it to the attention of others who might be taking the drug.
IYou take good care of yourself. Its good to hear that your dad has been up and about. The pair of you are quite amazing!!
Gillx

debatat

How are you doing today Colin? I hope things are improving for you.

Take care

Deb

skezier

Hi Colin,

Sorry to here whats been going on, I hope you soon are back to your old self. Glad your dad is picking up well, its a very worrying situation and the stress doesn't help.

Look after yourself, Cris x

jackie1955

Hi Colin, I've just caught up with this thread...... good grief its unbelievable!

I do hope things settle down for you. I havent been on too much because of problems with OH's health, its all so worrying isn't it trying to get the 'right' person to treat you, someone who knows what to do?

Sending you my best wishes - and Kay too, if shes like me she must be suffering as much if not more to see what your going through.

Jackie x