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Date: 30.05.2011
From: Gillian

Subject: Long term oral steroids

Following yesterdays visit to Dr at Asda and subsequent prescription for oral steroids. She said I would probably be on oral steroids for quite some time. My question is :- What is the daily dose which you kind people find beneficial? Also, have you experienced any of the side effects which are noted for long term use? Thank you, Gillian
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Date: 30.05.2011
From: Patricia

Subject: Re: Long term oral steroids

Hi Gillian - I have been on steroids since last June. I started on 30mg and took that amount until four months ago when I started weaning down and am now on 10mg daily. They have helped me enormously because I was in bed unable to move before taking them. At 10mg I definitely feel more pain and stiffness and don't cope as well.

The most important thing to know is that you need to take a calcium and vitamin d supplement. I wasn't advised of this and now have Osteopenia (precursor to Osteoporosis). You can get a script from your Doc but I buy Osteocare which has a lot of other minerals in for good bone density.

I have regular eye health check ups with my Optician because I am taking Hydroxychloroquine (Quinoric/Plaquenil) and there is a slight risk of retinal damage. He told me that there is a risk of cataracts with steroids.

The other 'problem' is weight gain and a puffier face. The thing to remember is the weight will go once the steroids are stopped - I hope!!

Dryer skin which is helped with a LOT of moisturiser.

I am sure there are more side effects but up until now I haven't experienced them :-)

The way I look at it is, that until my Consultant can stabilise my condition I need the steroids. I absolutely could not function at all without them. Not everyone gets all the side effects either Gillian.

Hope this helps....x
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Date: 30.05.2011
From: Gillian

Subject: Re: Long term oral steroids

Thank you Patricia. I too am on Plaquenil and have been advised to tell my optician when I next have a site test. They did a basic one at the hospital. I am currently on 40mg daily (started yesterday) but dont know what the consultant will say regarding dosage etc., Does the lower dose make your face go round and make you gain weight. I cant really afford to gain weight!! But if its that or not be able to walk then no contest really is there. Thank you.
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Date: 30.05.2011
From: Patricia

Subject: Re: Long term oral steroids

My weight gain and rounder face didn;t come straight away Gillian. After about three months I think. However, my face has slimmed down a bit having gone to the 10mg daily but my body has stayed the same - lol!!!

I completely agree, weight gain or not able to walk and in excructiating pain - no contest.

The people that count to us are really not concerned with how we look. Health wise - all we can do is try to make sure we eat our healthy stuff - and of course some cake/chocolate to help us cope. Now that's what I call balanced.

I read somewhere recently that it took someone
about nine months of plaquenil to take full effect. There's hope for us yet.

Take care Gillian...x
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Date: 31.05.2011
From: Gillian

Subject: Re: Long term oral steroids

Thank you Patricia. Sounds like you and me are soul mates!! You take care as well. Do you have family? Mine have all grown up and left home (thankfully), just me and hubby at home now. Dont think I could have coped with a growing family and all that brings feeling the way I do some days. xx
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Date: 31.05.2011
From: Patricia

Subject: Re: Long term oral steroids

Yes soul mates indeed!! Even down to the grown up family and one of mine has left home (thankfully for me too!) and one left to go. I absolutely agree I couldn't have coped with bringing children up and feeling this awful. I admire all the ones that can. Do you work?? I don't which I am glad about.

I am researching Antibiotic Protocol for RA Gillian. A lady called Maz left a note on here for me and has emailed me about it. She also has contact with a girl in America who is well now having been on this therapy for about a year. Before I have to go onto the biologics I would like to give this a go. There is a book called The New Arthritis Breakthrough about it. Am going to order the book. Asked my rheumatologist about it the last time I visited him and he said we can discuss it at the next appointment in September

If you want to keep in touch my email is patricia.haase@ntlworld.com. If not, no worries Gillian :-).

Hope you start feeling better very soon with the steroids. It is quite remarkable how effective they are...x
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Date: 31.05.2011
From: Gillian

Subject: Re: Long term oral steroids

Thank you for your email. I will email you so you have mine. Thank you so much for asking if I would like to keep in touch. Hugs G x
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Date: 01.06.2011
From: Maz

Subject: Re: Long term oral steroids

Nice to see some serious networking ladies !!

Good for you,
Maz
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Date: 01.06.2011
From: Patricia

Subject: Re: Long term oral steroids

How good is that Maz??? Won't it be quite something when we are better :-) Have received an email off Eileen now and she has had great results hasn't she. Will email you both later today.

Hope you are feeling better...x
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Date: 01.06.2011
From: Gillian

Subject: Re: Long term oral steroids

my email is wigglebutts22@hotmail.com
No laughing out loud please !!
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Date: 01.06.2011
From: Patricia

Subject: Re: Long term oral steroids

Thank you Gillian. I LOVE the email address. Good to know you still have a sense of humour through your pain :-)...x
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Date: 01.06.2011
From: Gillian

Subject: Re: Long term oral steroids

I have emailed you. Last night. It may go to your junk folder if your email does not recognise it. At work and its glorious sunshine outside..........wish I was sat in the garden x
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Date: 02.06.2011
From: Maz

Subject: Re: Long term oral steroids

Pat,

Just letting you know my friend Eileen has sent you an email, hope you reply to her she is good money!

Maz
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Date: 02.06.2011
From: Patricia

Subject: Re: Long term oral steroids

Thank you Maz. I have received it and I will DEFINITELY be replying. She sounds brilliant and is well again. That is fantastic.

I was going to email you both yesterday but I had visitors so just didn't get time :-(

By the weekend they will be winging their way to you both.

Hope you are feeling a little better?

Have a great day...x
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