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Date: 05.04.2010
From: Abbie

Subject: Come back steroids all is forgiven

Can't believe it! Only took last steroid on Tuesday and already my joints (especially my ankles) are swollen, hot and very painful. Gonna phone the dr tomorrow coz despite morphine i'm still in pain. If anyone else has been on MST morphine, what dose? I'm taking 40mg 9am & 9pm and about 4-5 teaspoons (10mg) of liquid morphine (oramorph) in 24hrs and still in pain. Surely that can't be right! Before this recent flare over last few days, was Only needing 1 teaspoon of liquid. Didn't fall asleep till about midnight last night coz of this and was up at 3:40am coz of pain and discomfort. Hate letting people down but suppose to look after my 4yr old niece and 5month old nephew tom morning but no way I can manage that and it wouldn't be safe either I don't think. Anyway enough of my rambling think i'm just feeling sorry for myself lol Thanks for reading!
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Date: 06.04.2010
From: sally

Subject: Re: Come back steroids all is forgiven

Hi Abbie, sorry to hear you are in so much pain. Let us know what the dr says. Maybe you need to go back on steroids for a bit and tail them off more slowly. I can't remember what you said about that on previous posts.
xx
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Date: 06.04.2010
From: Lynn B

Subject: Re: Come back steroids all is forgiven

Abbie sorry to hear your in so much pain, hope Dr can help tc xx
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Date: 06.04.2010
From: jill

Subject: Re: Come back steroids all is forgiven

((((hugs 4 Abbie))) Abbie im on Zomorph 100mg morning and night( apparentkly enough to kill a horse lol) anyway, MST Morphine I had that intraven in hosp....so cant compare my zomorph(morphine tabs) to what u r on, also u do know taht U can take Oramorph more thatn that in 24 hrs.....I take(when bad like u< But pls dont follow waht I do) ask GP, I take oramporh every 4 hours, take ten....u cant just be on 10mg in 24hrs, in hosp they give it every 4 hrs.....ask Abbie, it will help u, but u seem u r in a bad way, U Must go see someone, ring up the Rhummy sec, get an emergency clinic appr, ask if u can be fitted in at the end, and sound distressed! phoning them often gets u places quicker, U need to see your rhummy....sallys right, mb u need longer period on steroids.......what other meds r u on??
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Date: 06.04.2010
From: Abbie

Subject: Re: Come back steroids all is forgiven

Hi Jill! Called GP this am and he's not in till tomorrow so will call then. Also on mtx injections but Rheumy said she doesn't want to see me unless after 6 shots i'm still in pain. Only had four so far but was on mtx pills for 7months previous. Also had 3 depot steroid injections in the last 8months but they're getting less effective every time. Been up since 3:20am and in alot of pain again. Been taking 5ml/10mg of Oramorph every 4hrs since waking up. Gonna ring dr again tom and maybe He can increase the MST and get through my Rheumy's thick skull that I need to be seen. I'm kinda at the end of my tether now Argh!
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Date: 06.04.2010
From: sally

Subject: Re: Come back steroids all is forgiven

Hi Abbie, It all sounds awful. I do sympathize with you as I am struggling at the moment as well, though not as bad as you from the sounds of it. How often do you have the shots of mtx - when are the other two due? Can you at least get them to give you an appointment the week after your 6th shot? Is your gp sympathetic, maybe he can help? I tried to ring my consultant today but he's away for 6 weeks. This is third time he's had a 6 week break since I got ill - he's moving to research soon - maybe he's fed up seeing patients! I've reached the end of my tether too so all I can say to you is to hang on in there and will try and do the same myself. It's not easy
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Date: 06.04.2010
From: jill

Subject: Re: Come back steroids all is forgiven

Awwww Abbie, deffo go c ya GP(hope he/she is goood) he will see the state u r in, and will ring your ask him to FAX a letter to the rhummy ok, he can explain just how bad yu r....sending u hugs, love and comfort xx
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Date: 06.04.2010
From: jill

Subject: Re: Come back steroids all is forgiven

((((((( hugs n love for Sally))))) xx
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Date: 06.04.2010
From: Verity

Subject: Re: Come back steroids all is forgiven

Hang on in there girls. Youre doin well : ) xx
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Date: 06.04.2010
From: Sally

Subject: Re: Come back steroids all is forgiven

thank you Jill and Verity. Had a really bad day today, feeling angry about this disease and sad at everything that's happened over the past six months - but then I've found you lot through it so there is a silver lining. Going to take a sleeper tonight and some strong painkillers as am after oblivion. Thanks for being there when I need you most! xx
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Date: 07.04.2010
From: jill

Subject: Re: Come back steroids all is forgiven

Awww Sally, your such a sweet gal.... I take two diazapam at night and guess what? they keep me awake...Y is that? lol....even when I use to be on Tramodol, they kept me wide awake(not initially tho)
Ive also been given Tamazapan, guess what, same thing, dont sleep, and sleeping tabs, zopiclone, need two, and then i only get two houts, but end up with a thumping headache!!! \My gp cant beleive that the Diazapam keep me awake, and trust me, ive taken 3, and its worse, its like im hyper.....so all i take now is one at night, to stop muscle spasms, and that is kinda ok....
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Date: 07.04.2010
From: Sally

Subject: Re: Come back steroids all is forgiven

thanks Jill. You are a tough cookie aren't you? What does it take to knock you out - ketamine? lol.
Felt much better today after having a good sleep and chatting to friends.
xx
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Date: 07.04.2010
From: Abbie

Subject: Re: Come back steroids all is forgiven

Hi guys! Thanks for your kind words. Sally, so sorry to hear you are going through it too BIG HUGS! Sally my 5th mtx injection is Friday and my sixth next Friday. I was actually due an apt with Rheumy 2wks ago but 'there weren't any to allocate!' WTF! Pain still Soooo bad, can hardly walk, keep stumbling and hands keep either seizing up or giving out. Called today and left message for GP to ring but nothing and he's not in tomorrow. Not gonna bother Friday coz my apt with him is Sat am. Argh! Got a really bad feeling i'm not gonna sleep tonight. You can just tell eh? Anyway guys, Go well and Thanks for keeping me sane XXX
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Date: 08.04.2010
From: Sally

Subject: Re: Come back steroids all is forgiven

I'm so sorry to hear you are in so much pain Abbie. I know two weeks is a long time to wait to see someone but can't your GP give you a steroid injection? Or what about going to A&E - they would probably give you one there. It might help. I had one about 6 weeks ago as I was in loads of pain and it worked well and is only just beginning to wear off. Of course, I wouldn't wait another day if it were me (except I did once, waited 3 weeks for my rheumy appt, sounded very much like you, couldn't walk, sleep do anything, they took one look at me and gave me steroid inj and took me into hospital!) So don't wait if you can't.
xx
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Date: 08.04.2010
From: jill

Subject: Re: Come back steroids all is forgiven

Sally LOLOLOL, When i was bk in other night, as my fella was leaving, he actually told the nurse "jills on a lot of Morphine, so if U give her any, make sure its a lot" and then Added, I think she neesd Ketamine!!!! lolol

Abbie, Saslly is sooooo correct, if U feel your getting worse, Please ring an ambulance, and I promise U, whilst in hosp, they will go thru everything, your drug chart, and they will Help U control that terrible dreadful pain.....lots of love xx

Btw gang, sorry about my long huge posting up top....long one, but one I beleive needed saying!! x
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Date: 08.04.2010
From: Verity

Subject: Re: Come back steroids all is forgiven

I agree Jill, the initial post made me feel uncomfortable and wasn't sure whether to say owt or not lol. Now I dont have to!

How ya doin my dear?
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Date: 08.04.2010
From: jill

Subject: Re: Come back steroids all is forgiven

Im Ok Verity, its You im worried about x U have a lot happening soon and now the very sad news of your lovely friend....V, please do your best to Not over stress yourself emotionally, daft thing to say, I know, but u know what I mean....pls dont over do things x
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Date: 08.04.2010
From: Sally

Subject: Re: Come back steroids all is forgiven

Posting was good Jill. Too many self righteous gits around for my liking.

You alright Verity? I guess you've had some bad news from what Jill's said. HOpe you ok?

night gals!
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Date: 08.04.2010
From: Verity

Subject: Re: Come back steroids all is forgiven

Cheers Sally, I just posted to ya on the other link. Im Ok though : ) xx
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Date: 08.04.2010
From: Sally

Subject: Re: Come back steroids all is forgiven

Good, just read about your colleague, shocking. Glad you ok though.
xx
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Date: 14.04.2010
From: jill

Subject: Re: Come back steroids all is forgiven

Hi V, when U have ya op, r u going to go straight on to antibiotics, and / or steroids? im goona ask them to put me on antibiotics, be typical that i get the infection he mentioned, due to immune etc.... hope ya coping ok Verity Love to u xx
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Date: 14.04.2010
From: Verity

Subject: Re: Come back steroids all is forgiven

What are the antibiotics for? When Im healing? Im not sure what theyre gonna do to behonest! What time is ya op tomorrow?

Saw rhummy this morn and shes bent all the rules and got me on etanercept. This way I have 3 weeks of it. It's all she could do. She actually said she didnt know what to do. Scary...... I just hope to god it helps coz theres not alot else that can be done.

Im coping OK : ) Totally exhausted at the mo so im walkin round in a bit of a daze. My last CRP was 52.4 so god knows what it was in my last ones. Just hoping for the best, its all I can do at the mo. That and be patient!

Good luck lady! I'll be thinkin of ya tomorrow : )

xx
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