Date: 27.04.2010
From: Tracey
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Subject: What's your experience of steroids?!
Went to hospital today as they called and told me to stop Sulfasalazine last week and go and see specialist nurse. Saw her and she said I am not having a flare as such but my symptoms have actually got worse in last 4 months. Rheumy came in to see me and said to go back on Sulfa and rather than give me MTX at this stage he suggested an injection of steroids there and then and then 8 weeks of steroid tablets.
He suggested in some cases that it can re-boost your system and ease symptoms, so depending on how I am in 8 weeks will depend what course they take next!
Have many of you been on steroids or are currently on them? If so, what is your experience of them..good and bad!! forewarned is forearmed I think!
Thanks and hope you are all as pain free as you can be today xxx
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Date: 27.04.2010
From: Lynn B
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Subject: Re: What's your experience of steroids?!
Hi Tracey I have only ever had steroid injections cant help with the tabs soz, but i have an injection every 4 to 6 weeks would not get any relieve otherwise. I dont think i could manage without them. sorry cant be more helpful.tc xx
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Date: 27.04.2010
From: Verity
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Subject: Re: What's your experience of steroids?!
Hey Tracey, Ive only ever had steroid injections directly into the joint so can't really help you there. Good luck though! xx
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Date: 27.04.2010
From: Tracey
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Subject: Re: What's your experience of steroids?!
Thanks both!
I have only ever had injections in to the joint before too...the injection in to the bum was surprisingly unpainful!!
xx
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Date: 27.04.2010
From: Abbie
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Subject: Re: What's your experience of steroids?!
I have the depot steroid injection into my bum every 2-3 months. It works less every time but last one I had was given oral steroids too for 8wks. 10mg 4wks 5mg 4wks. Wasn't sure how they were doing till I finished and then bam AWFUL symptoms. Little did I know I was to taper off steroids but apt I was due before end of 8wks was never given. My GP put me back on 5mg for 4wks and then symptoms eased. Since then seen Rheumy and I've got tons of 1mg so at end of 4wks can taper off 1mg a week for four weeks. Steroids offer good relief but downside and i'm gonna be honest is weight gain, moon face and spots. Good luck with it all Tracey and keep us posted X PS I'm also on mtx injections.
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Date: 27.04.2010
From: Tracey
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Subject: Re: What's your experience of steroids?!
Hi Abbie - did you get moon face and spots etc even within 8 weeks?? I already have a bloody moon face due to weight gain!!!
I have been told to take 10mg per day for 2 weeks then do alternate days 10/5 for 2 weeks etc etc. I have looked on internet and see you can have serious affects if you stop too soon, but I too have not got an appointment before the 8 weeks ends!! Oh Joy!
And I thought this was good news today...preferable to going on MTX!!
Did you get hyper when you first went on tablets? I had injection today and start tablets tomorrow...woohoo!
All this crap we have to go through with unknown side effects and rubbish being put in our bodies!
Oh well....no pain no gain I guess!
xx
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Date: 27.04.2010
From: Jill
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Subject: Re: What's your experience of steroids?!
See Abbie, told yu were good, Your experience is invaluable, I agree with everything ya said to Tracey.... ive also had the Jabs Tracey in the joints, ass, etc, and also had the tablets, I try and NOT have the injections unless im real bad! had one behind the knee cap and i cried like a baby, took my breath away!...ive also has probs in past with the injections, sometimes they dont work at all, or mb for a week, the tablets initially are brill, (if not on for too long)neve been on them for longer than 3 weeks at a time tho.... i think the Moonface etc happens when u have had far too many steroids over a period of time, and weight gain is a deffo..... however, on a positive note for u, I think the rhummy is doing the best for u, and the steroids will give u an energy boost too, but dont agree with him still giving u the sulpha, shame he didnt take u offf them, its nasty stuff, and the side affects dont get any better, if u r suffering now beos of it....tc Jill x
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Date: 27.04.2010
From: Tracey
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Subject: Re: What's your experience of steroids?!
Hi jill
Thanks for that! I have not been suffering on Sulpha, just not been improving. I felt sick when I first took it but have had no real problems since then. It just appears that it is not enough on its own. From what I can gather it is nothing like as bad as MTX??
I had injections in to my elbow 3 times before for tennis elbow and I hit the roof each time! I admit I screamed! The boost one in my butt today was no different to having blood taken so I can live with that!
Told my other half I might get a sudden rush of energy in the next few days so he told me to make sure I had the hoover in my hand at the time!!! Oh ha ha ah aren't they funny! (He is actually brilliant and couldn't do this without him) xx
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Date: 27.04.2010
From: Sally
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Subject: Re: What's your experience of steroids?!
Hi Tracey,
I've been on them since last August and no palpable side effects at 8 weeks. Am a little surprised at the alternating thing though as I always drop down by degrees. First few times by 2.5 mg for six days and so on and now 1mg a week for two weeks. I have NOT got a moon face! Everyone keeps remarking on how I've managed to avoid that after all this time and it's just good bone structure :) - actually I have quite an angular face so it prob doesn't show much. The weight gain is easy to manage - just don't eat more food ha! ha! I put on a stone but ate a lot of comfort food when I suffered a bereavement last year and now have lost it at Weight Watchers. The other side effect that crept in after about 6 months is facial hair. I just use a cream on it every two weeks. I have tiny spots but think they are from the mtx as it lists acne as a side effect. (ABBIE! I read somewhere that you are treating them. Can I ask what you use?) I've had two systemic jabs. The first one was a miracle, went from not being able to walk to being able to in a matter of hours, though it didn't sort everything out. The second one was less dramatic and has just worn off and I can feel the difference unfortunately. Sounds to me as if you don't have a choice but I think you will feel a lot better. I can't manage without them at the moment.
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Date: 27.04.2010
From: Tracey
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Subject: Re: What's your experience of steroids?!
Thanks Sally...there is hope!! I had my systemic injection at about 10.30 today and nothing yet. She said about 2 days so will see what tomorrow brings! I will skipping around the place no doubt! lol!
Re weight loss, I lost 3 stone last year on Cambridge diet but put about half of it back on recently due to being fed up and immobile! No excuse I know! When I get myself more sorted I will have a better mental attitude to do something about it...until then I must only nibble carrots!! xx
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Date: 28.04.2010
From: Abbie
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Subject: Re: What's your experience of steroids?!
Hi Tracey! Yeah I got moon face and spots just after a couple of weeks ugh! Sally, for the spots I use Liz Earle spot on and cleanse and polish. Not cheap but works wonders! X
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Date: 28.04.2010
From: Sally
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Subject: Re: What's your experience of steroids?!
Thanks Abbie, I'll give it a go. Have been using Clearasil but it drys out my skin too much.
xx
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Date: 28.04.2010
From: KayJay
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Subject: Re: What's your experience of steroids?!
I've had them in my hip and ankle twice. Also a systemic one in me bum. I have to say they didn't seem to help but that's just me. What I must warn you about though if you are Diabetic the systemic ones can push up your blood sugar level. I had to find that one out the hard way because the Rhuemies never told me of that complication >:( - But so glad to hear it's does help o lot of you peeps ;0)
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Date: 28.04.2010
From: Jill
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Subject: Re: What's your experience of steroids?!
Abbie did u say yu got the Moonface Only after 8 weeks?....thats so fast, thort it might take a lot longer, and i guess face shapes make a difference, im lucky, ive also got strong bone structure, strong chin, so hopefully that wont happen to me.....anyway U take care xxx
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Date: 28.04.2010
From: Tracey
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Subject: Re: What's your experience of steroids?!
Well, not skipping round the room yet! Felt quite strange last night and feel a bit odd today....nothing new there though! I will have to stop looking for changes and give it a few days and see how I feel!
I already have a fairly round face shape so will be looking in the mirror every morning expecting to see Mrs Moon looking back at me....hopefully without the spots too!!
I hate all this waiting to see if medications work or not!! Just part and parcel of the joys of Old arthur!!
xxx
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Date: 28.04.2010
From: Lynn B
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Subject: Re: What's your experience of steroids?!
The only ones i have are the ones in the bum, they take over 5 to 7 days to feel any benefit and usualy last for 14 to 18 days and then it all slowly comes back s..t. xx
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Date: 29.04.2010
From: Abbie
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Subject: Re: What's your experience of steroids?!
@Jill, I got the bloody moon face after TWO WEEKS of being on steroids and last bum injection ugh! lol. As Kayjay said you need to watch blood sugar levels diabetic or not coz of the steroids. Due to my PCOS I have some sort of insulin thingy which means I have to take diabetic meds. Because of steroid history for brain disease and current bum steroids and oral steroids I have blood sugar blood test every month and GTT every 3months and last came back borderline diabetic. You have to be careful!
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Date: 29.04.2010
From: KayJay
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Subject: Re: What's your experience of steroids?!
Sorry to hear that Abbie. Yes I think even a non Diabetic would have to watch out for high blood sugar levels with Steroids. Can you believe it Abbie the Rhuemie knew I was Diabetic and didn't warn me at all. I actually found out on a Diabetes Forum when my blood sugar went sky high !! What meds are you on for the insulin problem ? I take Metformin.
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Date: 02.05.2010
From: Abbie
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Subject: Re: What's your experience of steroids?!
Kayjay that's awful you weren't warned, you could of got right poorly eh? Yes, i'm also on Metformin. 1g after lunch and 1g after dinner. XXX
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Date: 02.05.2010
From: Paul
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Subject: Re: What's your experience of steroids?!
i've taken injections and tablets but never again, i've put on about 2.5 stone if not more in weight and have a round face which i hate. The doc's keep telling me to go back on steriods but i refuse point blank...
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Date: 02.05.2010
From: Lynn B
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Subject: Re: What's your experience of steroids?!
They told me the steroids dont put on weight.. I have gained nearly 3 stone in weight, deff dont think i am gonna have any more. I have heart problems and I dont think it is helping that at all.
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Date: 02.05.2010
From: Paul
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Subject: Re: What's your experience of steroids?!
everyone i know whose taken steriods be it injections or tablets have put on weight.
The problem i have is that i cannot seem to lose it even though i do not take steriods any more and am pretty fit :-(
I look at a photo of me 4 years ago and the difference is unbelievable, i look a totally different person.
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Date: 03.05.2010
From: Sally
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Subject: Re: What's your experience of steroids?!
hi Paul, I have just lost a stone at Weight Watchers and am still on steroids so it is possible. I also am careful about salt in my food as you can have water retention too. My mum had steroids years ago and put on a lot of weight but she lost it eventually. Do not despair.
xx
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Date: 04.05.2010
From: Lucy30
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Subject: Re: What's your experience of steroids?!
Hi Tracey, I havehad both oral and joint injected steroids. I had the oral stroids whn younger but they did very little to get the RA under control and I gained so much weight. The steroids into the joint are a temporary relief an I got about 6 weeks relief from the pain. I had them twice into both hip joints but decided that the 6 weeks relief wasnt worth it and I needed a permanent fix
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Date: 07.05.2010
From: Abbie
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Subject: Re: What's your experience of steroids?!
@Paul' I was on 80mg pred June 2007 - June 2008 then took till July 2009 to come off. This was for a brain disease and they saved my life. I put on 4stone, had acne and major moon face I vowed never again. managed to loose a stone but have been back on them 3 months now for the arthur. I think you've really got to weigh up th argument vanity Or suffering
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