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Discussion Starter · #1 ·
:)

Just wanted to say hi. I was diagnosed with SLE when I was 18 and i'm now 30. I've been taking prednisolone (and only it) the whole time.

I'm a boy and i'm from Australia. Are there any fellow Aussies around?

hehe
 

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Stuart:

Welcome to the site. You have found the right place. Lots of friendly helpful people.

I am surprised that your Rhumy has not tried any of the steroid sparing medicines that are now being used to treat Lupus as the long term side affects of extended steroid use are so well known now.

Either way, I hope you are well and again welcome to the site.

Stephanie
 

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Discussion Starter · #3 ·
sam101360;550207 said:
Stuart:
I am surprised that your Rhumy has not tried any of the steroid sparing medicines that are now being used to treat Lupus as the long term side affects of extended steroid use are so well known now.
I don't, nor have i ever seen a Rheumatologist. But he looks after me and consults with the right people. The main thing is I have been seeing him for 12 years and I trust him. He is a nephrologist.

I suppose I should talk to him about other medications though.
 

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Hi and welcome Stuart!

I hope that your SLE has been well controlled and any flare-ups don't occur that often or you are in remission period!

I to find it strange you have been on steroids for so long without the use of Plaquenil (disease modifying med) and to replace the steroids or cut down on them a steroid sparing med!

If I was you I would definately get some more expertise help via another specialist for the SLE!
 

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Discussion Starter · #5 ·
Ive only ever had the one original bad flare - 12 years ago. That lasted about 6 months.

I have been pretty much healthy (in terms of SLE) since then except for the day to day stuff and the side effects of the meds. I've been hospitalised 5 or 6 times over the last 12 years due to infections caused by the meds though, the last one being at the beginning of the year after i shredded my knee down to the bone after coming off my motorbike.
 

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Hi Stuart

Welcome. Not an Aussi but have close family and friends living in Darwin, Sydney and Adelaide areas. I have not visited for 7 years, unfortunately.

Hope you enjoy making friends on the message boards.

Jen :wavey:
 

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Hi Stuart, what dose pred have you been taking and for how long? Iam glad you are being treated by somebody you trust that is a massive help, but does your nephrologist have the auto immune experience for SLE disease? Sounds as if you have been getting along ok so far so don't mean to be rude..just wondered. Take care of yourself, sure some aussies will be along soon:)
Claire
 

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Discussion Starter · #8 ·
I'm just taking 5mg/day which i've been taking for maybe 3 years. Prior to that it was higher and has been reduced down to this amount.

I do trust him and since I havent been sick i've been reluctant to change anything. Maybe i'm getting a bit superstitious :)

edit: fixed typo - gm -> mg
 

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Hi HST and welcome to the board.

The old saying if it is not broken then don't fix it...............well if your health has been stable for the best part of 12 years then your very lucky but I would be concerned at what the future may hold.

Personally I think you should be on Plaquenil along with the prednisone to help prevent future damage but this is just my humble opinion....for whatever it is worth.

It is nice to meet you and please join us in the chat room sometime.:wink2:
 

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Hi Stuart and welcome! Another Aussie here :bigsmile:

I too am surprised that your treatment is only Pred, albeit a low dose nowadays. It's good it's kept you stable all this time though. Most of us are started on Plaquenil and other meds added if and when needed. Obviously if you had kidney problems at such a young age then Pred was the way to go at the time to get things under control quickly - however it's not ideal as a long term med unless you are not able to take any of the other meds. I'm on a cocktail of Plaquenil, Imuran, NSAIDS and a few other things to boot :wink2: Hope the doc has you on calcium and Vit D to protect your bones?

Hope you enjoy the site and it's nice to have another Aussie on board, there are a handful around :)

love
Lily
 

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Hi Stuart,
The reason most people are on calcium & vit d is that the long term use of prednisone/prednisolone tends to cause bones to move towards osteoporosis. Since you went on pred at a very young age, you would do well to talk to your doctor about whether it is the right supplement for you to add in. I'm not very familiar about kidney problems, so don't know offhand if it would be good to add to your protocol or not. Hence, would suggest you talk to your doctor before starting anything.

I trust you get your labs drawn routinely. As long as you stay stable, you are doing well.

I think you meant mg for your pred, not gm - would be grams not milligrams.

Welcome aboard,
Sally
 

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Hi again, 5mgs of pred as a background dose isn't considered too damaging to your body and preferable to alot of the others, I am glad it has kept everything at bay for so long, its good to know what else is out there though in case anything changes later and plaquenil is the one to be aware of as a first line. I have been up and down on Steroids since diagnosis, got to 4mgs then got a virus...then back up etc etc, I take vit D tabs (1 twice a day) and have been since starting Steroids, I also will be having an annual Bone Density Scan to ensure the steroids are not having a detrimental effect on my bones..so far so good.. I walk alot though!!! According to my Rheumy the longterm probs with Steroids..(particularly if up and down) is risk of diabetes and osteroporosis. I am just hoping I can get down to your dose Stuart and stay there for a few years, that would be fabulous for me!:hehe: I am on plaquenil too though and a few others...grrr....Take care,
Claire
 

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Hi Stuart, welcome to the site. It is very friendly with loads of helpful info.

Take care

Deb
 

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Hi Stuart,

:eek: Yes!

Some medical conditions and medicines predispose people to secondary osteoporosis. These include:

  • long-term or frequent use of prednisone;
http://www.mydr.com.au/seniors-health/osteoporosis-risk-factors



Up to 6% of men and women over 60 in Australia use
corticosteroids. It is estimated that 30- 50% of patients on
long-term corticosteroid therapy will experience fractures.
Facts about fractures and corticosteroids
I
Minimal trauma fractures are a serious complication of
treatment with corticosteroids.
I
The extent of bone loss depends on the dose, duration of
therapy, age of the patient and underlying disease.
I
Bone loss is greatest in the first year of corticosteroid
therapy, occurring within months of therapy commencing
http://74.125.153.132/search?q=cach...dnisone+osteoporosis&cd=4&hl=en&ct=clnk&gl=au

I would raise the subject with your doc, maybe there's some reason you can't take it but it is not normal protocol to not be on it due to the risk of osteoporosis. Everyone I know who is on Pred either in high doses for a short period of time or even lower doses for a long period of time have been given calcium and vit D as a matter of course.

bye for now
Lily
 

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Hi Stuart and welcome :)

There are a few men around, they're just less "chatty" than we are - well that's what they claim anyway :wink2:

Katharine
 

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Discussion Starter · #19 ·
what a wonderful welcome guys, thanks :)

edit: regarding the chat, is that the link on the top of the forum that takes you to the java chat? if so ive never seen anyone in there.

Either doing something wrong or its being in australia in a weird time zone
 

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If someone is in chat you will see a number next to Chat Room, top blue bar across the top of the page, and it will let you know how many people are chatting. Typically there is always someone on the board so if you want to chat, go in and a number one will show up letting others know that someone is there waiting to chit chat.

We have loads of fun in chat and please get on some Vitamin D and things to protect your bones.:wink2::wink2::wink2:
 
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