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Ailsa-H
#1 Posted : Tuesday, November 09, 2010 9:46:25 PM Quote
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I had my 1st screening for anti-TNF last month. My GP called me in to discuss the letter he was sent which stated that with DAS of 7.1 I am 'clearly eligible'. I have the 2nd screening on Monday.

I am nervous about agreeing to start as it is such a difficult time for me. I "lost" my entire half term holiday that I was desperately hanging on for as my Dad was taken into hospital. He is the main carer for my mum who is in a wheelchair after a stroke. In the last week I have had 2 really dreadful situations with 2 of my sons and then my daughter wanting to leave College. Seriously, if this happened on a TV soap, viewers would say it was too far fetched.

I've tried to cope with each individual situation but tonight I feel overwhelmed. It doesn't feel like a good time to change meds. I can't risk being more unwell as there is only my income, only me for my parents (brother visited for one afternoon in past 13 months) and only me for the kids (unemployed alcoholic ex husband). Ofsted are iminent and all I want to do is sleep and cry.

Sorry for going on. Don't know who else to ask though. Am I likely to feel worse for a while on anti-TNFs? If I delay it for a while, would I have to go through all the screening processes again? I just don't know what to do for the best. XX Ailsa
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flw93
#2 Posted : Tuesday, November 09, 2010 10:04:00 PM Quote
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Location: Stockton on Tees, Cleveland
Hi Ailsa

So sorry that you are having such a hard time. I understand completely. I too am a teacher with an impending OFSTED, working flat out and trying to cope with RA. I am on an anti tnf drug Enbrel. I have been self injecting for the last six weeks. To be honest I was dreading starting it having failed on 3 DMARDs, but although I have a terrible reaction around the injection site, I have had very few side effects. However, I am not having much success with the drug and am off work tomorrow with extreme fatigue and swollen hands. Got an appointment with the RA nurse tomorrow so hopefully will get some steroids to reduce the swelling.

Hope you give the anti TNF drugs a chance, after all you have nothing to lose and I hope your home situation improves with time. Hopefully OFSTED wont come in until you feel better!!!!

Louise
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dorat
#3 Posted : Tuesday, November 09, 2010 10:55:39 PM Quote
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Oh Ailsa, I really feel for you, what a dreadful time you are having!
I really don't know whether to say start on the new drug or not. It could be that this is the lifeline you need and the Enbrel will turn out to be THE drug for you. On the other hand, you may have side effects that make you feel worse. No-one knows how they will react to a drug until they take it but for you it would be disastrous if it makes you worse, the way things are at the moment.
Are you already taking a drug that you will carry on with alongside Enbrel? If so, that could help that you are only adding a drug and not changing.
My own experience on starting humira was quite good, no side effects but I did have a flare which can happen with a new drug.
Can you talk it over with your rheumy nurse at all? She would be able to advise about delaying it, I have no idea if you would have to go through the screening process again.
Whatever you decide I hope it works out for you and I really hope things get better at home very soon. It's such a lot for you to cope with on top of the RA.

Love and hugs,
Doreen xx
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lisapamela
#4 Posted : Wednesday, November 10, 2010 10:13:09 AM Quote
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Location: Blackburn, Lancashire

HI Ailsa

Oh you poor thing, you are certainly having a tough time at the moment.

For me Enbrel was THE drug, after taking 3 different ones that did not work or I had terrible side effects with. No drug can stop the flares but on a day to day basis it gave me my life back.

I know everyone is different, but from my own experience, I did not have any side effects apart from some redness round the injection site for the first few injections.

I sincerely hope that things get better for you soon.

Best wishes
Lisa
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JulieM
#5 Posted : Wednesday, November 10, 2010 1:28:41 PM Quote
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Location: W. Yorkshire
Ailsa I can totally sympathise with you. Sometimes we get so much thrown at us all at once that we just can't cope with making our own medical decisions on top of it all.

I think if it was me I would go and have the 2nd assessment done and then see what the results are for that. I would at the same time tell your consultant all that you have just told us and ask his/her advice re having to have the assessments again if you wait a while.

Then I would ask for a depo injection.
After that I would go away and carry on as I am for the time being on the meds you are on then that is one less thing to think and worry about.

Maybe once ofsted is out of the way, you may feel more relaxed and able to cope by taking one thing at a time like that.

Can I ask if you are taking any anti depressants at the moment? It sounds to me like you could maybe use a little lift just to get you through these rough times. (I take them)

Things have a way of working themselves out sometimes-I also wonder if maybe your children could help with Grandma?

Keep us up to date won't you?
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rose-B
#6 Posted : Wednesday, November 10, 2010 2:27:51 PM Quote
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Location: Somerset


Hello Ailsa,

Poor you. What a lot you have going on at the moment. Sorry to hear about your Dad I hope your children
can help you with errands / shopping for your Mum. Have you asked Social Services for help for your Mum
just a thought.

With regard to the RA, the stress you are going through certainly will be enough to give you a flare. I would
speak with the RA nurse again and spill all your troubles and take a lead by what they say to you.
Also I too take anti depressants as I was at a very low ebb earlier in the year . It made a big difference to
me so may be worth considering.

Take care.

Rose
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suzanne_p
#7 Posted : Wednesday, November 10, 2010 4:36:32 PM Quote
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hi Ailsa,

just wanted to say i really feel for you ... life sure has a way of kicking us when we're down.

i totally understand about you feeling overwhelmed and i was going to suggest the same as Rose, perhaps a visit to the GP might help and a short course of Anti-Depressants to get you through this difficult time.

i can understand about not wanting to start the TFN at this time as you just can't take it all in and cope with it.

hope some of your Children could help with your Parents needs and take some of the pressure away from you.

all i can do is send you love and hugs and hope to hear things are improving for you soon.

Suzanne x
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Mairead-H
#8 Posted : Thursday, November 18, 2010 5:22:18 PM Quote
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Oh no, it's been a terrible year for everyone seemingly. Just when you think things can't get any worse they do.

Now I'm onto my third lot of drugs I do understand that feeling of not being able to take time off sick or be ill in a crisis. Believe me, this year I've had my dad needing a knee replacement then finding out he needs open heart surgery, my mom having a very bad fall and breaking her arm very badly, a cancer scare for me, job losses, my own job being threatened, my husband's job being threatened, rushing to Ireland for a wedding I had little notic about and could barely afford and now my boiler has blown up costing me £2k and even more pain to my badly flared hands.

I would LOVE to be able to have the luxury of trying different meds and taking a few weeks to get used to them. Even a few days would be nice. Not in this lifetime.

A friend with worst case scenario eczma (he's like the chap from the Singing Detective without his meds - and sometimes with them) said to me recently, "The healthy don't deserve to be healthy. They have no idea how much the ill suffer." It's not until you get sick you realise what a luxury good health is. The world doesn't stop when you get sick. Nothing changes other than you're sick. I wish they'd teach you that at school.

Good luck. Believe me, things will change for the better. One day something will go right and after that it'll carry on going right.
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Lorna-A
#9 Posted : Friday, November 19, 2010 10:12:45 PM Quote
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Hi Ailsa,

Really sorry to hear about your problems at the moment, it's true what they say, " It never rains but it pours." Things have to start on the up they cannot get much worse for you. Try your new drug and try to be positive it will work, you never know it just might. There is one out there for us all and we just have to find it.

Sit and have a good talk with your kids, tell them they have to help pull there weight or you will go under and where would they all be. I really hope all this extra stress does not bring on more problems for you. Try to rest as much as you can, soak in the shower, I used to do that when I was bad, it does help.

Love and best wishes for a peaceful time. Take care Lorna x Smile
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