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wide awake after steroid injection! Options
Ailsa-H
#1 Posted : Tuesday, October 12, 2010 6:30:00 AM Quote
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I had my rheumy appointment yesterday. I had to stop leflunomide 3 weeks ago when my bp went too high. The rheumy did the 1st assessment for biologics and I have an appointmeny for next month to be assessed again. Meanwhile I have had to restart MTX and Leflunomide and have had the steroid injection too.

Don't know if the combination of starting the 2 meds didn't agree with the steroids, but in spite of feeling really tired at bedtime, I was awake again before midnight and have been up since just after 4. Everything feels worse in the night - I've worried about the meds, whether biologics is the right thing, the children and particularly my Dad who is very low and unwell - he is the main carer for mum so it has serious implications for her too. Feeling a bit more positive now. Anyone got any good ideas for middle of the night panics? I have had this after the last 3 jabs but not quite as bad as this time. XX Ailsa
Rose-B
#2 Posted : Friday, October 15, 2010 11:35:05 PM Quote
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Dear Ailsa.
Sorry for late reply - I have been without a laptop

You poor thing - no body replied to you either. Yes you definately need your nights
sleep and as you say all our worries are multipied. I used my i pod and play
music when I don't sleep. However I now take amitryptline 40 mg and i must admit
I do appear to sleep better.

I was interested to know about your counselling and visit (no computer while we
were all seeing the specialist) Have they told you which drug yet ?

I had a steriod last Friday and i must admit the inflam is much better. I
am now like you being referred for anti TNF so now I am waiting my appointment.

We are very similar

Take care

Rose
annamaria
#3 Posted : Saturday, October 16, 2010 2:25:13 PM Quote
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Hi Ailsa
Just to say that this sleeplessness is quite common after steroid jabs and hopefully should pass and then you may see some improvement in your joints. You propably should mention these side effects to your doctor though especially if it is worse every time, as steroids can cause mood swings as well as many other side effects. I've been having the jabs for 30 years now and always get very red and hot afterwards and its important to drink plenty of water. Sometimes they work better than others, I dont know why. I have noticed that the dosage is much larger too these days, 120mg, twice what they used to give me.

The anti TNF drugs are very good if they work well for you and can reduce the need for so many steroids in many cases.

I can really understand your worries and everything seems worse in the middle of the night. I listen to the radio with a little earpiece so I dont disturb hubby and it does stop me thinking about things too much.

Do hope you are feeling a little better today.

Take care,
Liz
xx
Kathleen_C
#4 Posted : Saturday, October 16, 2010 4:02:33 PM Quote
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Hi Ailsa,

I think worries are always magnified and are at their worst when you can`t sleep - I hate feeling like that. I think the steroid jab can make you feel a bit "hyper" for a couple of days, so things may settle.

I can empathise with your worries about anti-TNF drugs - I was scared stiff at the thought of them, but absolutely nothing else has worked for me, and my bloods were always "rampant," so it was really a case of Hobson`s choice. Prior to anti-TNFs I was in a wheelchair to go any distance, and was convinced this would always be the case. I started humira over three years ago, and things are much improved.

I was lucky that I have a very GP, who is always prepared to listen when I`m anxious, and I have a good rheumy nurse too.

I take amytriptiline too at night, like Rose - I take 20 mg alongside my painkillers, and they do help. I always read before settling for sleep, and sometimes listen to music on my i-pod. I`ve just seen a pillow advertised that you can plug your music into, then hopefully drift off, but I want to know a bit more about it first.

Hope you feel better soon,

Kathleen x

Ailsa-H
#5 Posted : Saturday, October 16, 2010 5:33:56 PM Quote
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Thankyou Rose, Liz and Kathleen - really value your advice. I'm sleeping better now that the effects have worn off a bit, and also sorted a few of the pains out. It definitely makes me irritable and impatient though! Not good in a classroom full of noisy teenagers!

I seem to be ok with the leflunomide for the time being - no headaches yet. I was worrying about restarting MTX and Lef but the rheumy said it can take several weeks to complete the antiTNF process and she didn't want me to be without anything in the meantime.

I've been on amitriptyline at night for 18 months and it really does help with night pain. I take 75mg about 2 hours before I want to be in bed and it usually works well. We do seem to be RA 'twins' Rose! It really helps to have a buddy in the process! Sorry about your poorly laptop - I hate it when I can't get online! Take care everyone and have a good weekend XX Ailsa
Rose-B
#6 Posted : Sunday, October 17, 2010 11:55:31 AM Quote
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Ailsa

Yes we are twins and sue from Somerset the same as us. We can all keep up our
story and see how we all go.

It beautiful day today so going to Stourhead GArdens they picking me so not
even having to drive.

Have a good sunday.

Rose
Sally B
#7 Posted : Wednesday, October 27, 2010 5:40:16 PM Quote
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Location: Little Dewchurch, Hereford
Hi Ailsa! I find that IM steroid makes me feel really fuzzy & wired - it does wear off after a few days though & they do make the joints feel better....
My daughter (who doesn't have RA) has a neck pillow with speakers inside - it's great for when she wants to listen to audio books in bed so we don't all have to listen as well! - she can't fall asleep with earphones in or on. Argos now sell a more conventional pillow with speakers in - Immie used to just plug hers into a bedside CD player, but you can use with ipods/MP3 players as well. Ive tried borrowing hers & it's great as you can have it on quite quietly but still hear OK
Hope everything settles soon. Love Sally
PS Goog luck with biologics assessment
Ailsa-H
#8 Posted : Wednesday, October 27, 2010 8:29:00 PM Quote
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Hi Sally - what an excellent idea. I will look out for one of those pillows at the weekend. XX Ailsa
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