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Discussion Starter · #1 ·
Hi,

My name is Atlanta and I am 22 years old. I am the only person out of all the people I know who has SLE and myositis. So like other lupus sufferers I guess you have felt as lonely as I have at some point. I have had the problems for two years but was diagnosed about 6 months ago. The first doctor I saw tried to pass it off as depression because her lab was so crap, it didn't pick up the lupus. Went to a better place in London and they diagnosed me straight away. I was put on prednisolone and MMF. I hate the prednisolone because it has given me the worse ever skin problem, although I have not put on any weight yet. Also, are we meant to get severe mood swings with these drugs?

I feel that I would benefit from getting in touch with other people in the same situation as I feel really isolated and lonely at times and want to moan to other sufferers. My constant fear is of being labelled a hypochondriac because people without the condition sometimes struggle to understand what it is like living with this on a day to day basis.

Sorry for the essay!
 

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Hi Atlanta,

I'm 35 and I'm living in Belgium though originally Irish. I too have sle and the docs think also a possible myositis overlap.

Even though the labs here were fine, I still had trouble with diagnosis as nothing much shows in my blood. I was eventually dx through a skin biopsy and have been taken seriously since.

I haven't gained any weight on the 15 mg of pred I'm on and my mood is in fact much improved due to significantly less pain :lol:

I hope you enjoy the site and learn as much here as I have,
all the best,
Katharine
 

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Hello and welcome!

It's certainly possible for prednisone, especially at higher doses, to bring about psychological effects like mood swings, depression (or even the opposite!), and difficulty sleeping, or aggression. Or as Katherine has noted it can improve your mood due to less pain.

You've come to a great place to find support and share information and stories. People here will certainly understand what you are living better than other people in your life that are healthy. Feel free to commisserate, and share success stories from time to time too.

Take care!
 

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Hi Maia,

I'm sorry to hear about your troubles. I know it is really hard to get people to understand and frankly, I don't think they ever will.

Yes, prednisone does cause mood swings and psychologic changes, I just got off of pred for 3 weeks of a low dose (10 mg for 2 weeks, and 5 mg for 1 week) I did not want to taper because for the entire 3 weeks I barely slept. I didn't gain weight, but I was going completely crazy from no sleep. I think you should let your doctor know about the mood swings. There might be something your doctor can help with.

Hope you feel better.
 

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Atlanta,

Welcome to the Lupus Site. You have come to a good place to "talk" with other people with lupus and similar diseases. I have Lupus overlap with Scleroderma, RA and Fibromyalgia. There are many of us here who have multiple diseases/conditions so you shouldn't feel alone having more than lupus to deal with.

I would call the lupus nurse and let her know about your mood swings with the prednisolone perhaps there is something they can do about your dose. I know that steroids are the main medication used to treat myositis but it is always important to let your doctors know about side effects that are problematic. When I am on steroids I get acne and weight gain. The higher the dose the worse the acne. Again I would ask about help for the acne as there could well be something the doctor will suggest to help deal with it.

When is your next appointment with your rheumatologist in London? I know that at St. Thomas the wait for the follow up appointments is sometimes much longer than is optimum.

Take care,
Karen
 

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Discussion Starter · #6 ·
Hi Guys,

Thanks for your friendly welcome! It makes me feel better already getting to chat to other people with the condition.

I currently attend the Royal Free Hospital in London every six weeks as I was so ill with it last year (I lost so much weight doctors thought I was anorexic). While I am happy it gets looked at every six weeks, I sometimes get the feeling that when I am feeling ill with it the doctors don't really listen because my blood results are taken every six weeks and they don't take into account what happens in between the six weeks. I am currently signed off work for a week or two.

I would like to ask a question - do you find it hard working? I am having problems trying to hold onto jobs as things are still quite unpredictable (I get migraines, sickness and terrible depression). Also, does anyone attend the lupus clinic at St. Thomas'? My doctor was thinking of referring me there and wanted to know what they're like?
 

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Many here find they have to take off work for a period of time - or longer. But many more do NOT have to do this. I am presently on long term disability through my former employer. The reasons I went on disability were joint pain, fatigue, frequent infections, cognitive dysfunction, and other pain problems caused by lupus (e.g. costochondritis, pleuritis). All of this made it impossible to work with enough regularity to stay on with my employer, as it was I was actually "fired" due to too many absences! But I had applied for long term disability as I knew it was coming down to that.... so it all turned out OK.

I have heard very good things about St. Thomas Clinic. Others will be by with personal experience I'm sure.
 

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Discussion Starter · #8 ·
I find a lot of my absenses are due to things like frequent infections too and have lost some jobs over it. I have applied for disability living allowance and now I'm waiting to see what happens next. I am thinking about looking into setting up my own business so that I can work from home, but that costs money. Networking on this message board is doing me wonders already, I am spilling out everything that is bothering me already and feel better.
 

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Hi there and welcome to the site.

I am glad that you found it as everyone is so kind and helpful here.

I had a similar effect on the Pred. and did not stay on long....but coming down off the dose was horrible.

I am wondering if your doctor started you on Plaquenil along with the pred?

I hope that your appointment and treatment go well.

Nice to meet you.
 

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Discussion Starter · #10 ·
Hiya,

It's great that people here seem really nice. It does everyone good to share experiences.

I was on plaquenil a while ago but it just didn't seem to work. I'm on something else called MMF which is an immunosuppressant. I've only discovered today that these also cause mood swings and bad skin!

But I am having a better day today! Apart from a minor stomach upset, I am feeling nice and chilled.

It's all about getting good and bad days isnt it?

:)
 

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Hi Atlanta,

I found that Lupus is one of the toughest things to live with when it comes to employent through the summer I work 50 hour weeks and then I come to winter get one dose of the flu and then it sets everything off again.
I think as unique as we are with our illness work cannot be our biggest worry when we suffer a flair I have been lucky in that my employers have always been sympathetic. Be sure to be upfront with them warts n all if they haven't heard of Lupus gather them a breif overview on the disease.
If you do a great job when you are well they will wait it out.
I recently had a performance review with my boss & I decided I was going to tell him I couldn't do it any longer (I have a very physical job), He responded that he fully understood my physical setbacks and has offered to employ a man to help me with my every day work.

You just never know :)
 

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Hi there Lis,

I doubt you'll have a reply to your post as this is a very old post.

For that reason I'm going to close this thread.

Katharine
 
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