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sharon palmer
#1 Posted : Friday, December 27, 2013 10:53:39 PM Quote
Rank: Member

Groups: Registered

Joined: 1/19/2010
Posts: 13
hello all

I have been a member for 7 years but I have not posted for quite some time so I will re introduce myself, as I said I was diagnosed 7 years ago and my consultant thought that I had signs of the disease at least 4 years prior to that. All my joints are affected, and due to other health issues treatment has been limited. I am asthmatic so anti inflamatories are not an option for me, I was given methotrexate but had to stop straight away as it made my asthma really bad, I then tried Arava leflunomide but that was also stopped straight away as it affected my liver enzymes. All I had was pain relief which is Fentynal patches, oxycodone and orimorph and paracetamol.
It was decided that I was a good candidate for anti TNFs so I was started on Humeria, I had 14 infections in 18 months whilst on it so it had to be stopped. Last year I was seriously ill I had 4 large blood clots on my lungs which left me with lung damage, which means that I can not try any more anti TNFs. I am seeing my new consultant on The 2nd of January I have been without a consultant for over a year as mine left and they have only now replaced him.
I wanted to ask if anyone is on a low dose of steroids long term as I want to ask about this as a possibility for me as I can not think of anything else that I will be allowed to try. It would be good to know your experience of taking the steroids and how much they have helped you. I have not been well for the last few months and my RA has been particularly bad I really hope they can do something for me.

thanks

love shraron
Paul Barrett
#2 Posted : Saturday, December 28, 2013 10:12:38 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/24/2013
Posts: 703
Location: Hexham
Welcome back Sharon

Low dose steroids is a bit of a vague term because the rheumies idea of what constitutes a normal dose is very different from other disciplines. When I had was hospitalised with a severe RA flare I was prescribed 40mg per day in A&E and I am currently on 17mg and unable to get any lower. But when I asked the rheumy team they said that they would consider 5-7mg as a normal dose.

As a short term treatment steroids are OK but their long term side effects make them unsuitable for long term use. That said, there are plenty of people on here, including me who have been on them for longer A year in my case.

You need to speak to your rheumy / GP
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Paul Barrett
#3 Posted : Saturday, December 28, 2013 10:14:10 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/24/2013
Posts: 703
Location: Hexham
BTW, the steroids have helped me a lot, getting me from an in patient to an out patient.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
jewelsh
#4 Posted : Saturday, December 28, 2013 11:25:56 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 9/15/2013
Posts: 125
Hi Sharon
Sorry to hear your RA is so bad and that you have been so poorly this last year especially. I really hope your new consultant can help and has some decent answers for you. You certainly deserve some having waited for so long without much help.

Keep in touch!

Love Julie
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