Date: 12.04.2011
From: Tinkpink1
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Subject: Steroids... what are you on and what side effects?
Hey guys I am on Prednisolone.. have been for the past 7 years... what should I expect the long term damage to be? I am on a lose dose .. 2.5 - 5mg normally and I up it when a flare seems imminent.. as it did last week when I was told to up to 30mg! Its scary being on these drugs long term....
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Date: 12.04.2011
From: davina
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Subject: Re: Steroids... what are you on and what side effects?
hi tinkpink i wanted to also know this as i've been on now for 10 months and put on loads of weight but the long term is what is also important. i am on 7.5 at the moment and not controlling or helping my ra but my rheumy is adamant she wants me off them even if my drugs not working. oh well.
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Date: 12.04.2011
From: Patricia
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Subject: Re: Steroids... what are you on and what side effects?
Hi! I have been on prednisolone for about ten months now and have had a Dexa Scan which showed I have Osteopenia. Although the Doctors aren't telling me it is due to the steroids I am certain it is! I also went to the Optician because I have been put on Hydroxychloroquine (and this can damage the retina apparently) and he told me that steroids can cause cataracts. I had never heard this but I guess it must be true. It must also depend on the dosage. I have been on 30mg for many months and am now on 15mg reducing to 10mg. I have put on at least a stone and a half in weight and my face looks like a chipmunk. Not a pretty sight!!! It is terrible having to take them but I would be in a mess if I didn't. I agree completely that they don't control all the pain but until they can control our ra with a dmard or biologic we have to stay on it really. This is such an unpredictable illness isn't it and one day is never the same as the other. Oh dear.
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Date: 13.04.2011
From: nicci
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Subject: Re: Steroids... what are you on and what side effects?
I was put on 7.5mg daily at the end of march. It only takes the edge off the pain. Had 30mg for a week and that was amazing. Also on hydroxychloroquine and I think my consultant is hoping they will work and then I can come off the pred. That's in July so I will have been on them 12 weeks by then. Interesting about the retina and hydroxychloroquine.
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Date: 13.04.2011
From: louloubelle
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Subject: Re: Steroids... what are you on and what side effects?
Hi I've had 3 injections over the last 12 months of Kennelog (not sure that's how you spell it) which is a steroid. I've also had it injected directly into the joints about 15 times over the last year (only a small dose enters the whole body). I have developed a delightful buffalo hump (that is actually what the rheumy called it) which is high up the back about an inch or two below the neck. It is apparantly a fat deposit as steroid cause this in certain areas such as the upper back and face (hence the moon face appearance that some patients get). Hope this helps
Lou x
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Date: 13.04.2011
From: Tom H
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Subject: Re: Steroids... what are you on and what side effects?
I started on 50mg in October and it totally sorted out the constant flair in my knee, have graually reduced now to 10mg. I have put 2 stone on and have a moon face, I hate it and want to stop them. Want to stop my MTX and pred asap and am going to ask to try enbrel.
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Date: 13.04.2011
From: Patricia
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Subject: Re: Steroids... what are you on and what side effects?
Oh yes, the moon face. I have that also. I hate it too:-( It is so embarrassing - and the weight gain is awful.
The thing is even reducing the steroids my weight is still the same - haven't lost any. Hope I don't end up looking like this forever - lol.
Tom - I hope your rheumatologist listens to your wishes about the enbrel. It is certainly worth asking about. I know someone who is on MTX and Enbrel is almost back to normal :-)
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Date: 13.04.2011
From: Tinkpink1
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Subject: Re: Steroids... what are you on and what side effects?
Thanks for you comments guys, its so nice that others are in the same boat as me... I am on MTX too 10mg a week... this seems to do the trick.. I think. Coupled with the steroids. I am seeing a new specialist soon, who is apparently completely against steroids so I will update you all on what the contingency plan is. Keep strong everyone and enjoy life as much as you can! Love Tink
xxx
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Date: 13.04.2011
From: Maz
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Subject: Re: Steroids... what are you on and what side effects?
Lucky you guys for being able to tolerate steroids like pred .. for me a 3 day stint wilst trying to calm a latex allergy response produced every, & I mean every, side effect known to man -- now there is a red label on my medical file stating 'do not give prednisone'
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Date: 14.04.2011
From: TINKPINK1
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Subject: Re: Steroids... what are you on and what side effects?
Maz.. what do you taken then? Just curious. Tink
x
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Date: 14.04.2011
From: nicola
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Subject: Re: Steroids... what are you on and what side effects?
hi, remember that a lot of the weight gain is caused because steroids make you more hungry! i notice a massive increase in my appetitie when i'm on them. Methotrexate totally killed all interest in food, so i've actually lost weight over the last year of treatment for RA despite being on prednisolone most of that year. So if i'm on a high dose of steroids i try to make sure the biscuit cupboard is empty and try very hard to snack on healthy food. My main problem with steroids is how they affect my sleep and mood, i have a lot of difficulty sleeping, however my mood increases massively (though i'm not sure if thats beacuse i'm usually feeling v stiff and sore and sorry for myself before starting them and they make my joints feel so much better)
as a physio, before i was diagnosed with RA, i used to tell people about the long term problems associated with steroids and encourage them to come off them ASAP. BUT as someone who cant really live without them just now.... i make sure i get as much exercise as i can to keep my bones and muscles healthy, i take them early in the day in the hope they dont keep me awake too long and try to eat healthily.
nic x
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Date: 14.04.2011
From: TINKPINK1
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Subject: Re: Steroids... what are you on and what side effects?
What dose of Metho are you on Nicola? Tink
x
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Date: 14.04.2011
From: Patricia
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Subject: Re: Steroids... what are you on and what side effects?
Nicola - is physio and remedial massage okay to have when the RA is still active? My muscles are very weak and I now have osteopenia because of the steroids but think physio/massage may help me get on the move exericse wise again...Pat x
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Date: 15.04.2011
From: nicola
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Subject: Re: Steroids... what are you on and what side effects?
Tinkpink, I'm on my 12th week of crystal meth and taking 15mg - feeling fine on it with minimal side effects thank goodness! Patricia, when your RA is active its a pretty fine balance between exercising enough to keep your joints mobile and your muscles strong... and not causing more inflammation by doing too much - its all about pacing yourself! Its always better to be doing some form of exercise and its probably best to be done under the guidance of a physio for starters, as they can advise on whats the best for you depending on what joints are most affected.
massage might be good, again depending what the main problem areas are but i'd go to a massage therapist for that.
does your rheumatology dept have a specialist physio, they are often a great source of info regarding exercise classes etc that are more tailored to your needs.
good luck & have a nice weekend
nic
Good luck
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Date: 15.04.2011
From: Patricia
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Subject: Re: Steroids... what are you on and what side effects?
Awww thank you so much Nic for that good advice. My rheumatology department doesn't have a specialist physio and no mention from my rheumatologist about physio. Sadly, all my joints are affected at the moment 'dampened' down with the steroids etc. I used to be soooo fit before this too. I try to go for a short walk most evenings. I do appreciate your advice and kindness. Will seek out a good physio for starters and take it from there. Really happy to hear that your treatment is working well for you...Pat x
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