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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Today is Friday, I must remember that, I thought it was Thursday when I did my earlier post wishing you luck for tomorrow, silly me, oh well, I can blame the drugs.
Whats all this about signing a form? Someone else mentioned this, I haven't signed anything yet.
It looks like we are both in the same boat about starting it before Christmas, I am hoping to go away for a month, nothing booked yet and I am getting a bit worried now. When I had my second assessment I did ask when they thought I would be starting on it, was told by the end of October. Well. that's gone now due to waiting for the x ray report. I'm still waiting for the phone call re delivery and then I've got to wait for a nurse to come to my home, I think the way it's going at the moment it will be more like the end of November. I really wanted to have a few injections before I go or even book, worried about having initial side effects from the drug and it spoiling Christmas, plus the fact I can't get to see anyone if anything does happen. Eldest daughter asked if I could postpone it until after Christmas, I don't think a few weeks waiting will make much difference then at least I won't be worrying about things over Christmas, hopefully if I do decide to do this they will understand at my hospital.
Pleased to see that you have had a steroid injection today, hope it kicks in soon.
I've thought about ringing the helpline for someone to ring me who's already on the drug to.
Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi susan - that's great news about the humira - one hurdle out of the way and closer to getting a comfortable life back. Hope you have a lovely trip at Xmas - it sounds as if you've got it well planned out and I'm sure it'll run smoothly for you. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member
Groups: Registered
Joined: 12/6/2009
Posts: 81
Location: norfolk
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Hi Sylvia and Paula,
Cor the steroid pulse has left me feeling "normal" just a few sore joints but thats all ...I feel as though I have won the lottery, its great.
Warm hugs
Sue
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Yes, steroids are wonderful, just a pity we can't keep on them all the time.
Hope they keep doing the magic for you until Humira kicks in.....fingers crossed.
Paula x
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Rank: Advanced Member
Groups: Registered
Joined: 12/6/2009
Posts: 81
Location: norfolk
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Hi
Steroid pulse is working so well but I now have a rotten cough and Doctor has given me an inhaler to use. Feeling very well and its so lovely not having to crawl into bed around eight in the evening because you cannot take any more. The concentration has improved too.
I have decided now to postpone starting Humira until I return from two weeks away over Christmas as I would hate having side effects whilst being abroad.
Hope you are all ok
Sue
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Sue
Pity about the cough, hope it clears up soon. Lovely to read how well you feel at the moment.
I'm really dithering at the moment about waiting to start after Christmas, just had the phone call about delivery, they want to deliver next Monday and then I am to wait for a phone call from a nurse to arrange appointment for her to see me. Just been talking to my husband about it all. Really struggling trying to make my mind up what to do now. There is no guarantee that it will start to work over Christmas, been told it normally takes around 6 -8 weeks before I will get any real benefit from it, so wondering what's the point of taking it now, might as well wait until after Christmas then I won't be worrying. Told husband that I am managing with things at the moment, but wouldn't want to go away feeling like I am, not sure if I will beable to walk far, so I would need to increase my steroids anyway. So that in turn will mean that I've got a larger dose of steroids going in my body and then the anti tnf on top of that, really hate having to take all of these drugs. Husband thinks we should go away for two weeks instead of four, just looked at flights (not booked anything yet) and it is twice the price of what it would cost if we went earlier and came back later.
Stupid, stupid illness!!!!!!
Dithering Paula
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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More Ramblings from Cooke Towers Spoken to nurse earlier, told her I am dithering, she spoke alot of common sense. What would we do without these nurses? Her gut feeling is for me to start taking it sooner rather than later, telling me that the longer I leave it the harder the Enbrel has to work to get it under control. Said that I should have a few injections done before I go and if anything does happen regarding side effects I just have to stop it. I won't have much in my system so it shouldn't take long for it to go if I did get any reaction. Told to either phone them or email them if anything does happen while I am away and they will let me know what to do.....I'm probably worrying about nothing and sail through it all. Also advised me on taking extra steroids, adding that she knows I am sensible and know what I am doing.....well she thinks I am so I must be  So all systems go now!!!! Watch this space!!!!! Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Paula,
so glad to hear you've had a chat with the Nurse,
it is such a big step to start on these drugs i totally understand you dithering .. especially as you are going away.
i am sure you will be fine, it's the lead up and anticipation i think is the hardest,
i will wait to hear how you get on.
i truly do understand how you feel, and i am thinking of you.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hi Paula & everyone Been catching up on your post. Its the unknown.....I'm scared. Went to rheumy this afternoon - because I'm now on waiting list for knee replacement she will wait until after op and I go on tnf.....I said do I really have to choose which one or can you help me?!? The 2 main one's rheumy nurse mentioned was enb & hum. I score enough points to be an ideal patient  Set the ball rolling with bloods for ra, hep, hiv etc... Chest xray at a later date. Scary stuff - I know many of you on anti doo daas are happy and more mobile. I also got referral form for hydro (what a bonus)!!! That's cheered me up.  Got steriod injection. Rheumy nurse gave me a das booklet, knee booklets - lots to read. I keep you all posted. Jane Xxx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Paula - maybe the nurse gave you good advice to get started sooner rather than put it off till later. You sound as if you're worrying yourself to bits - just keep in mind that most problems are no where near as bad when you actually face up to them. It's the worrying and fretting that makes it all so horrendous! And as she says you can always stop if you get totally awful side effects and you'll be no worse than you are now - But what if you take it and get a few irritating side effects??? Well you're a tough cookie, aren't you? You've been through so much already, you can cope with a bit of discomfort if the prospect is to feel better in the longer term!! I know that you are strong and able to face this - all your posts ring through with courage and strength - so take a deep breath and make the decision....... But of course the most likely thing is that you'll take the jab and nothing will happen!!!!! Well nothing at first. No side effects. No improvement - you'll most likely feel exactly the same as you do now........ but of course you'll have faced up to your fear and conquered it!!!!!!!! And then you'll be able to look forward to feeling benefit of the medication, which will come eventually if you give it a chance to work for you. I do hope that you find your answers to this one - it's a difficult decision and I really feel for you - much love and hugs - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Bless you Sylvia.....thank you!!!!
I have been worried about side effects, but to be honest I haven't really had many with SLZ (not even the orange wee) and no initial ones with MTX. My liver function did go up when I started injecting a year after I started taking it, had my dose dropped and it's normal now. I've not got such a mop of hair that I use to have, folic acid was increased to try to combat that, but to be honest it's easier and quicker when I blow dry it, so in some respects I am glad.....just don't want to lose anymore. I do think that some people have a higher tolerance level to these drugs than others.
Paula x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Paula
Take a big breath Paula and go for it...I would try and start treatment as soon as possible so that you can get your active inflammation down. Try and think really positive thoughts about the treatment, side effects are mainly skin reactions around the injection site and infections, you will be monitored closely with regular blood tests to start with so try not to fret too much. It's always scary starting a new treatment but you can really help yourself by believing the drug will work and thinking positive about the outcome. Be strong and calm.
Love and luck
Rebecca
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Great post Rebecca - positive thinking is a much underrated "drug"!! Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member
Groups: Registered
Joined: 5/22/2010
Posts: 51
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Hi Paula,I was told it takes up to 6 months for enbel injection to kick in.Although along with it i take sulfalazine,mtx 20 mg 30 mg steroids,8 months later i still ahve awful flares only last week i had to call my GP out my foot was so swollen & red the pain was really bad although i was taking strongest co-codmel she had me morphine delivered to me.Ohhhh all these drugs what is happening to us?.
So good luck for your future.
Valerie_R
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hello.
Just to help reassure you if I can..... it took me only 3 yes 3 weeks to get
good results and they have continued, that was 4 years ago. Yes it is worrying
before you start these newer drugs but so is going to the dentist, in my opinion!!
The Enbrel doesn't stay in the body for long ( can't remember what) but it means
any side effect if intolerable will be eradicated. Take care Anne
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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THat's lovely news Anne - great to hear. Hope you're having a lovely weekend (despite the torrential rain!) - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Thanks again for all of your kind replies.
I have done my first injection and put a post up in the blog section of how it went.
Paula x
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