Vindicated!

tillytop

I am so chuffed today because, after a year and a half of being told by numerous GPs and specialists that alll the horrible things which were happening to me couldn't possibly be due to the Humira and basically, just to go away and live with them (despite being unable to work, drive, or basically live any kind of a normal life) I have just read a copy of the letter from my most recent rheumatology vist (after 20 weeks off the Humira) which says:

"...multiple symptoms on Humira have not returned, and we can be confident that it was the drug that caused these, including visual symptoms and hand and foot symptoms".

I am tempted to photocopy this letter and send it to every one of the doctors I have seen during this time ...

I am so angry by the way I have been treated over this, but finally I have been proved right (I said all along that it was down to the Humira) and hopefully I can put this horrible experience behind me and move on.

Vindicated!!!

Tilly xxx

skezier

Hi Tilly,

I am glad you have been vindicated and I so hope now they will be able to help you?

I think I might be tempted to send the letters..... Then instead of posting them maybe burning them and yet it would be better that know it can happen.... difficult one isn't it? I know when I lost my toes I wanted to tale it to the gp who told me it was only mildly infected! I didn't though

Sending you a ((((( ))))) an a bucket of hopes you will now get some decent help. Love Cris xx

tillytop

Thanks for your message Cris and for the ((())))s and hopes!

I do think I will now get some decent help - and burning the letters might be a good idea - would save on postage and probably make me feel better too! So sorry about what happened with your toes Cris - your GPs response was unforgiveable.

(( )))) s, and energy buckets coming your way, together with a big mug of tea!

Lots love Tilly xxx

maggiemoo

Hi,Tillytop,so glad you eventually got some vindication.I was on humira and had to come off, got sore mouth, blisters on my lips, sun reaction. Great thing if it suits, but not so good when it causes worse things than what it is meant to help. MM

skezier

Hi Tilly,

Glad you will at last get some decent help! Hey I was going to turn it all into a paperweight and give it to him! he nearly lost me a leg.... I mean I can take them being wrong but he was really bad!

Doing letters and then burning them can be a very rewarding feeling More (((( )))) and hopes. Cris xx

dorcas

Hi Tilly

What a letter! what an outcome! :shock: you were right all along.

it's been so awful for you, all this time, and I'm sorry that you had such an experience with a drug that's supposed to help.....but at last the proof is there in black and white.

I hope now that they will move on with your treatments Tilly. what's the next step for you?

love n congratulatory (((hugs)))

Iris xxx

tillytop

Oh you do make me laugh Cris!!! How you keep a sense of humour despite everything I don't know and I really admire you for it!

Think if I did try to burn the letters, knowing me, I'd probably end up burning the house down, so maybe better not!

Hopefully you got my email thanking you (belatedly) for the latest foal pictures? If not "thank you" again. I can't believe how much they have grown!

Love Tilly xxx

tillytop

Thanks Iris!

Re next steps - Metho starting Monday (if I can pluck up the courage to start it again) and then possibly Rituximab (ditto).

When is your next Infliximab? Is it next week? Are you seeing any benefit at all yet? Sorry if I'm asking questions which have already been answered on the forum - I've lost track a bit recently.

Fingers crossed for you.

Lots love Tilly x

skezier

Hi Tilly,

I did thanks flower, just really bad at answering :roll:

You did well on the mtx last time didn't you? Hey mine might just be starting to sort of work... bi less fluid in the arms and wrists.....so far....

Shall have a look later and see iris's answers as i have a special sheep to get ready.... in the Laura Ashley dress

You have a good day and I shall get you a special triple cone ice cream... now they are to die for ((( ))) Cris xx

dreamdaisy

I think you should photocopy it, many times, then send the arrogant t****rs who wrote you off a copy each, preferably including a nice smear of cat poo (I have tons you can use, it is far worse than dog) then burn the rest for your satisfaction. After that, go to the shops and buy something sparkly as a 'thank you' present to yourself for holding out, being strong, and for reaching a new beginning. I am so pleased for you tillytop, it is good you have been proved right. Enjoy your week-end, it's about time you had some nice stuff happen. DD

dorcas

Hi Tilly,

good luck with restarting the Mtx flower. I have had a stop start relationship with Mtx over ten years ... but fingers crossed.. since being on injectable meth it has been so much easier to tolerate.

I hope it'll be the same for you.

are you due to see rheummy soon to discuss the anti tnf's? maybe Rituximab will be just the right one for you..... it has a different target cell to attach itself to than Humira or Infliximab so may suit you better. I shall have everything crossed for you Tilly.

I can't really say I'm benefiting from Inflix ...yet. but I'm not up to full dose until my next infusion which is on the 1st October... so Hope's got plenty time to get her best dress organised.

The infusion absolutely flattens me, like being run over by a steam-roller, for two days after. It also made me nauseous and head-achey but less so with the last infusion. Instead I've had mouth ulcers and spots .... not serious enough to phone about... just annoying and enough for my dentist to remark about.

Some joints seem less swollen... others remain doggedly the same. ... so it's a 'wait and see'.

I wonder how Janies' doing on the ritux?

Iris xxx

barbara12

Hi Tilly
Good for you, I think it is disgusting that we have to fight doctors like we do.
I had this with my last gp, you could not talk to him, or tell him anything, has far has he was concerned he was right and that was that.
Like you said photocopy the letter and send it out to them all.
I am so glad you are at least clearer about what has been going on,
Good luck with the treatment
Love
Barbara xx

frogmorton

[
"...multiple symptoms on Humira have not returned, and we can be confident that I am tempted to photocopy this letter and send it to every one of the doctors I have seen during this time ...



Vindicated!!!

Tilly xxx[/quote]

You DO that Tilly!!!!

You do it!!

They deserve to a) know and b) apologise to you

Love

Toni xxxx

ironic

Oh Tilly,
Do hope you start feeling better soon. What a awful rollercoaster it has been for you.

Great that you have a decent dr this time. When trust is broken it's difficult to believe in them.

Savour your vindication

Lv, Ix

speedalong

Hi Tilly,

I'm glad that finally you have been believed. It must be such a relief that the awful symptoms have gone, now that you are no longer on humira. I would make some copies of that letter and whenever you attend one of the aforementioned docs - give them a copy and say you'd like this on file please.

Speedy[/b]

coco67

hi tilly

im glad youve been vindicated, i WOULD send coppies of the letter out, how else are these drs ment to learn there not god and can be wrong sometimes.

keep smilling hun

coco xx

tillytop

Thanks all for your messages!

Maggiemoo - sorry you had Humira probs too. Hopefully you are now taking something else which is giving you some relief?

Cris - thanks for the ice-cream! It was, as you say, very, very yummy!!!! Don't worry about not replying to the e-mail - didn't expect a reply, just wanted you to know I'd got the lovely piccys and to thank you for sending them! Metho did work for me last time round, yes - and really pleased to hear that you think it might be starting to help you too. Everything crossed for you. ((()))).

DD - love your reply!

Iris - thanks for your good methotrexate wishes! My next rheumy appt is 30th Sept so I can discuss more with him then. Sorry you don't feel the Infliximab is helping you as yet. Will be thinking of you on 1st Oct though and hoping you feel less steamrollered afterwards next time. I too have been wondering how Janie is doing.

Barbara and Ironic – thanks for your good wishes.

Toni, Speedy and Coco – thanks for your messages too. Think I will make some copies of the letter and keep them with me when I go to the hospital, ready to hand out as appropriate.

I also plan to inform the Medicines and Healthcare Regulations Agency which is what the docs are required to do – particularly with newer drugs like Humira. Apparently as a patient there is a way to report these things.

Thanks again all – hope I haven’t missed anyone!

Tilly xxx

lavenderlady

hi Tilly Well done you in proving the DRs wrong, I wish Drs would take into account that we do know why our bodys not playing by the rules, and we do know whats up and when it started and the effects on our own body we are more intune to our bodies then they are ,
I would write EXACTLY what you want to say to your drs, do it while being angry then file it away and get it out when you are a lot more calmer about it, no doubt it will make you laugh with what you called him etc

tillytop

Thanks Lavenderlady and Lynn for your messages.

I keep looking at the letter today just in case I imagined it!

I definitely feel that I don't just want to let this go - and if I can do something to save anyone else going through the same thing, it would definitely be worth it.

Love Tilly xxx