Just need to let off steam...

tillytop · 15. May 2010, 15:19

Hi all - please bear with me cos I am about to vent and I could really do with some understanding ears (if that makes sense). My husband, G, is so supportive and understanding but I just can’t put him through another one of my downers.
Right, here goes:
I am soooo fed up (understatement). I have been really ill over past year and a half with what I (and everyone else close to me) believe are Humira side effects. I had to give up work last July because of my health and I have spent the past year being pushed from hosp appt to hosp appt, consultant to consultant and had just about every test going. All tests came back inconclusive so I was discharged from each one and basically left to get on with it. Every symptom I was experiencing was listed as a Humira side effect but not one doc would even consider that Humira was responsible. They preferred to try to diagnose me with epilepsy, migraine, Crohns disease, Coeliac disease, dermatitis, dental abscesses and so the list goes on...
Finally, when one side of my face swelled up a few weeks ago, my GP thought he ought to talk to Rheumatology about it and eventually, after I chased the GP because he had forgotten, and a rheumatology appt which I had to fight for I was told that the consultant “wasn’t convinced” that this was to do with the Humira (!””£”£!”£!”£!”%^^^****!!!!!) but to be on the safe side to stop taking all RA meds (bar anti inflamms and injected steroids if needed) to see what happened before making a decision on a third anti-tnf or an alternative biologic drug. When I expressed concern about how I was going to manage for 12 weeks without drugs they said “oh the Humira will stay in your system for a while so you’ll probably be ok”. I think they live in cloud cuckoo land – it’s just a good job I’m not trying to work at the moment.
I was both terrified and relieved to be off the Humira – and when I got over the shock thought it would at least give my body time to recover after 14 years of continuous pounding from a cocktail of RA meds. Anyway, after 3 weeks RA is starting to kick back in and, to add insult to injury I am still itching almost to the point of distraction – think it is continuation of skin infection cause by or related to Humira damping down immune system. Hoping not liver related – liver enzymes were raised at last blood test for first time ever. Relying on Valium to sleep. Refuse to go back to GP at the moment – have had enough of being treated like a hypochondriac or just being palmed off with more drugs so trying to manage and trying not to worry (never my strength – I could worry for the universe).
G has a week off work this week and we are on hols - not going away but days out and just generally relaxing. But I am really struggling to be upbeat and cheerful because of how I am feeling and don't want to feel I am ruining yet another holiday. Last year we cancelled 2 hols when I was so unwell and interrupted another to come back for a hosp appt which was a complete waste of time. G is so wonderful and understanding and never makes me feel bad but I am so frustrated at the moment that I just want to scream (VERY LOUDLY!!!!) and I can feel myself slipping down into that deep black hole.
For those of you who stuck with it to the end of this long moan – thanks for listening. It really helps to know that you understand.
Tilly x

barbara12 · 15. May 2010, 15:56

Hi Tilly
Now dont you dare apologise for the vent of emotions, that what we are here for, to support one another.
I am sorry you going through all this, I have OA so I cannot comment on the drugs you are taking, but I totally understand where you are coming from.
What I can understand is the battle you are having with your gp and consultants, please go back to see them.
It is you that has to take the drugs and it is your body, so dont be put off by there attitude, they get paid very well to treat you.
I do hope you enjoy your time together this week, and please rest in between
Sorry I am sounding like a gp.
You take care
and we are always here to talk to.
Love
Barbara x

frogmorton · 15. May 2010, 15:56

Hey Tilly

Blimey girl! You are going through it and have been for a very long time so I'm suprised you havent cracked before.

Ranting is ok on here as you know

Your OH sounds a real bless and thank goodness you have him eh?

You know what though OH probably knows you are feeling so bad as he clearly loves you very much. he will likley be wondering if you are ok anyway. You feel as though you have 'ruined' two holidays already

I bet G wouldnt care how many you 'ruined' if you could just feel better. Bet he would give up all his holidays ever if this RA would go AWAY!!!

So you are off all meds at the moment. I do think that is wise given your symptoms and hope that your liver is not affected.

When are you due to see someone I wonder? I hope it is soon so that your health can be reveiwed sooner rather than later.

In the meantime please use us - we are here to help and give you any support we can.

You ahvent been around that long but Tilly you have fitted in so well - already helping others.

Take care

and...have you got your runner beans in yet?

Love

Toni xx

cheshirefay · 15. May 2010, 16:49

Hi Tilly,
You are having such a rotten time of it , it is no wonder you are fed up

I know from personal experience about every diagnosis under the sun except the right one . Sometimes I think that they havn`t got a clue!
I would trust your instincts about what is wrong regardless of the multiple diagnosis , I think we are the experts of our own bodies and usually get it right in the long run.
It is very draining trying to be "OK" when you are really suffering , your man sounds fantastic though and a rock.
I would imagine the Docs are worried about admitting that you could have had a reaction to Humira in case of litigation or maybe that is my cynical nature! Hope you feel a little better soon xx

mummyb · 15. May 2010, 16:57

Hi Tilly so sorry to hear that your are having such a rotten time at the mo. Hope they get your meds sorted out real soon and hope you soon start to feel better. I, too have a wonderful hubby, we're so lucky, don't know what I'd do without mine. Try to stay strong and keep your chin up, here are some hugs for you ((((())))), Best wishes, Brenda

page35 · 15. May 2010, 17:08

Hi Tilly
it is mad isnt it that all your syptoms are on the meds side effects list but docs wont listen :x well i guess at least your off them now for a while.
sorry you feel so rough and i hope things improve for you.
best wishes
sharon

tillytop · 15. May 2010, 17:08

Thanks so much everyone - it's so lovely to know that you understand. And you are right - I really couldn't cope without G - he has been wonderful all through the RA joy and always knows the right thing to do and say. I do think that beiing off the Humira is the right thing for me the moment but I just want to feel better (don't we all)! The RA I can cope with for now - have done it before and know what's coming but I really thought that the other things would be improving by now. S'pose I thought that once the RA kicked in again, the other things would start to get better. Some have - but if I could only stop itching! I have routine blood test appt next Friday so at least I'll be able to find out what's going on with my liver. I think I have another rheumatology appt on 10th June but they've also sent me another letter for a later date so I'm not sure if the June appt is still on and I can't face phoning to find out at the moment. They haven't officially cancelled 10th June, so I might just turn up anyway and hope they will see me.
Thanks again - I'm off to take my "happy pill" now so I can go to sleep - and looking forward to a quiet day at home tomorrow - pottering in the garden if the weather is nice. Might get those beans planted Toni! Love Tilly x

skezier · 15. May 2010, 17:47

Hi Tilly,

Sorry your feeling so battered at the moment. Its often a problem with side effects that they go undiagnosed and every other wrong diagnosis they can come up with is mentioned.

I am also sure your G doesn't see it that way and he would probably rather you were talking to him than wondering whats going on with you maybe?

Tilly you will get through this with out the back hole but just in case there is a ladder in it so you can get back out easier than you think. I wish I could do something but sending a ((( ))) and a hope the next bloods are shwing a better liver result and I think your right don't cancel the 10th yet and see if they do. I really do hope you will start to feel better soon. Luv Cris xx

dolittle · 15. May 2010, 18:00

Hello Tilly,
I haven't posted for a while. I've been a right misog! I have RA.

I'm on Humira - 5 months into it - it has been Ok for some time but about 6 weeks ago I started to itch. I could have scratched my scalp off. I've been waiting for a dermo appointment, which I finally got. They have told me that I have Rosacea on my face and psoriasis (mild version) and it's probably a reaction to the Humira ........ although not in so many words - but it's been known to happen.

Like you I have tood and froed from one consultant to another, with various reasons for the symptoms I've got ... never the meds, so I can sympathise with the way you feel. Wish I could wave a magic wand, even to let you have a pain/symptom/illness free holiday. Glad you've got such a supportive OH - it must be hard on them. I sometimes feel awful when I see the look on R's face, 'cos he can't do anything to help.

Hope they get you sorted quickly and nicely. Keep your chin up, ducks and I wish you well.
Dolittle

frogmorton · 16. May 2010, 02:59

Hi Tilly

Only me!!!!

Just checking in and hoping you are feeling ok today - yes keep that apt i would if it hasnt been cancelled it shold still be yours.

Hope the bloods come back ok too - let's cross our fingers eh?

You keep your chin up and get out in that garden - my beans are out - poor things think it might rain today :roll:

You take care

Love

Toni xx

tillytop · 16. May 2010, 05:01

Hi Cris, Dolittle and Toni. Thanks so much for your messages - really appreciate the support.
I am feeling much brighter today - thanks to Cris's ladder I don't feel quite so scared of falling into that big black hole and not being able to climb out!
Dolittle - I was interested to hear about your itching. Did they give you anything to help or do you just have to put up with it? Mine was grudgingly diagnosed as a skin infection in the places where I had an obvious rash but the itching elsewhere - particularly on my scalp is a real nightmare. It's enough to drive you barmy isn't it?!
Toni, thanks for "checking in". Wonderful OH has just made me breakfast and I am just going out to open the greenhouse. Even when I feel too fed up to think about gardening (not often I might add) I find that as soon as I get outside I start to potter and soon feel much better. I think gardening should come on prescription don’t you? Works brilliantly and no nasty side effects except when, like me the other day, you fall over flowerpots head first into the border!!!!!!!
Hope you all have a happy Sunday, whatever you are doing.
Love Tilly x

bertyboy · 16. May 2010, 09:24

just popping on togive a gardening glove hug , and wish you well xxxxxxxxxxx

sarahrockfan · 16. May 2010, 09:39

Hi Tilly, Giving you a cyber hug((((((((((((((())))))))))))))

bertyboy wrote:

just popping on togive a gardening glove hug , and wish you well xxxxxxxxxxx

annie_mial · 16. May 2010, 10:02

Oh, Tilly, just caught up with this.............so so sorry you are on the lip of the black hole, hopefully you could put Cris' ladder across it?

I love your gardening thread so much and I can't wait to make a start on our own little garden. I will have to exercise much restraint for the first week or so once we are down there as I must tackle the inside first..........but I think I will be hanging on to the door frame desperately trying not to let go as it calls seductively to me!

Glad to see you are feeling a little better today; I believe firmly that the fresh air cures many complaints.

Annie

dreamdaisy · 16. May 2010, 12:15

Afternoon gorgeous girl. I am so sorry that it's rough for you at the moment. I've been sitting here, thinking about the itching and I have some suggestions that may (or may not) help.

When I was plagued with eczema as a child my ma used to bathe me with salt water to soothe and heal the skin where I had scratched myself raw: I think her brew was a teaspoon of salt to a pint of warm water. I still use salt water now when necessary but I don't measure - I just tip salt into the water and taste it - if it's salty it'll do! Mum would also measure it out in bath water too so I could be totally immersed. She would then moisturise me from top to toe with aqueous cream - I am allergic to lanolin, a common ingredient in moisturisers, and aqeuous cream doesn't have any. I do remember this helping. Olive oil is good too, or baby oil with added aloe vera.

Brushing the itchy places with a feather duster can also help - the tickling alleviates the itchy feel.

Regarding the docs - it is so frustrating when they don't appear to listen or take you seriously. This is not in your mind, you are not making it up, and if no-one is listening then it's time to protest. Write letters to important people, name names and express how disappointed you are to be fobbed off - you expect better from their service. See if that does any good!

Meanwhile lovely girl, rant away to us, that's what we're here for. I too have a very supportive husband, and I know that is a blessing, but I don't t like to talk to him too much because there is nothing he can do and that upsets him. You gave me a lovely, warm welcome when I joined, and I will always remember your kind words. This will pass, the bad times always do, but they seem to pass more slowly compared to the rapid rate at which the good times end! But it will pass.

Thinking of you in your garden. Dreamdaisy

ironic · 16. May 2010, 12:15

HI Tilly,

Really sorry that you are having such a uncertain time of it.

Cannot really help with med advice, but sending my support anyway. Hope the Friday appt goes well and they can give you some advice.

Lv, Ix

tillytop · 16. May 2010, 16:39

Hello all and thanks Bertyboy, Sararockfan, Annie, Ironic and DD for your hugs and thoughts. Thanks too DD for the suggestions about how to cope with the itching. Salt water bit is probably a bit physically challenging at the moment but I will definitely try the feather duster thing - if nothing else it'll give me a giggle!

Feeling much more positive today - had a lovely day - went out for lunch and planted my beans and other seeds in the greenhouse this afternoon. Rather stiff and uncomfortable now but valium and bed are calling - ooh and a couple (or ten) squares of Green and Black's organic chocolate - medicinal of course!
Thanks again.
Love Tilly x
PS: Annie, glad you are enjoying the gardening thread so much and looking forward so much to tackling your own garden. I really believe that gardening is good for the soul!

skezier · 17. May 2010, 13:52

Hi Tilly,

Glad to see your feeling better and I am building a cover over the black hole so you can't fall in.

A ((( ))) and cdm is my medication..... I know its not so ethical but I do have a huge amount of guilt cus I do actually do ethical..... just .... not all of it..... :oops: You will get there completely soon flower. luv Cris xx

tillytop · 17. May 2010, 15:34

skezier wrote:

Hi Tilly,

Glad to see your feeling better and I am building a cover over the black hole so you can't fall in.

A ((( ))) and cdm is my medication..... I know its not so ethical but I do have a huge amount of guilt cus I do actually do ethical..... just .... not all of it..... :oops: You will get there completely soon flower. luv Cris xx

Thanks Cris - cover much appreciated! Not sure what cdm is? But hey, if it helps..... Love Tilly x

dolittle · 17. May 2010, 18:00

Hi Tilly,
Just picked up your question.
They did say it was the Humira and it was Rosacea on my face and mild psoriasis on my arms and legs & a little bit on my scalp. They've given me some Dermol to use in the bath - it's an emollient and Diprobase too moisturise the skin. It seems to have calmed everything down and I haven't 'grown' any more rash. Haven't done anything with my head, but am using a baby shampoo and letting my hair dry itself. That seems to have settled down a bit. Rosex for the face - which has cleared that up nicely.

Yes, the itching drives you mad, but I chewed gum and tried not to scratch.

Must say, it was my GP who sent me to a dermy and it took a few months to get there. Will bump this up if I get any more 'itisis' with it, so that you'll know. On the whole it's working well for me - after what the mtx and so forth did to me!

Hope you get sorted. If I can help any further, shout out.
Do

woodbon · 18. May 2010, 04:40

Hello,
What a rotten time you've been having.

No wonder you feel so down and depressed. I have OA, but I've been sent to so many different departments I feel embarresed when hospital doc looks at my notes! :oops:

I hope things start to improve soon.

Love Sue

suncatcher · 18. May 2010, 04:51

Im sorry to hear this you rant on girl. We get messed about so much. I dont blame you for sharing bottleing it up is worse.

tillytop · 18. May 2010, 15:06

Thanks for your posts Suncatcher, Sue and Dolittle.
Dolittle - thanks for the info on the skin related "stuff". I do think at least some of mine is down to a yeast/fungal based skin infection as a result of the humira but I also get strange marks and lumps and bumps (some itchy, some not) appearing periodically. If my itching etc doesn't get better once the Humira has had more time to get out of my system I think I will need to push for a Dermatologist referral too. Thanks again for the info - and glad that the Humira seems to be working for you overall.
Love Tilly x

Just need to let off steam...

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