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Discussion Starter · #1 ·
Hi everyone. I'm feeling so miserable at the moment. I haven't been on here much over the last couple of years. I've been lucky so far and have had a medicated remission for 2 years which has let me lead a fairly normal life. Well that all came to an end about 12 weeks ago. I've had a dreadful time with lots of scary things happening including now finding it difficult to walk. I've also had difficulties getting an earlier appointment with the consultant - my routine appointment was next July! I finally got to see him yesterday and he's put me on steroids. I know this probably sounds fairly light to all of you, but for me this is a huge step as I never thought it would come to this and I'm frankly scared of what will happen next. To make matters worse I now have to wait to get them until a letter is sent to my GP and he writes the prescription. I've been told this morning this could take a week!

Sorry to moan but you have all been so good in the past and I know you'll understand.

Lis :(
 

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Hi Lis,

I'm sorry to hear that your remission seems to be over :( Let's hope that this will just be a short interval and that you will go back to feeling better soon.

I think it is normal to be scared by any changes in our "usual" disease state. We are all aware that this is a complex and potentially very serious disease. For me that level of seriousness is probably a good thing as I would tend to live in total denial all the time if that knowledge wasn't there. I would ignore things too long, not go to the doc enough...just generally let things go.

The steroids may just be a short term thing but really the important thing here is to take it one day at a time - really a case of crossing each bridge as it comes.

lots of hugs :hug:

Katharine
 

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Hi Lis, lets just hope its short lived and you be ok real soon, but i know what you mean baout being scared when anything new happens


u take care of yourself Lin xx
 

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Dear Lis

Im sorry you are facing the unpredictability of the wolf once again. Hopefully the steroid treatment will kick this flare to the kerb fast for you :hugbetter:

If its any consolation I had a short lived flare a couple of months ago when I could barely walk. I ended up on 40mg of pred and now reduced back down to 5mg. The flare didnt last too long and I seem to be getting back on an even keel at the moment. I hope its a short journey for you too :hug:

Let us know how you are doing and if we can help with anything

Luv n stuff
Joan:rose:
 

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Completely understandable how you're feeling - I've felt much the same way. I hope you get your script soon and get back to feeling better. I've also had very short term flares, only needing prednisone for 2-4 weeks sometimes. Maybe this will be the case for you too!
 

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Dear Lis,
I am so sorry to hear of this downturn. It must be so disappointing after such a long period of the Lupus being under control.
I share your hesitation about steroids and have (so far) managed to avoid them. I pray you will avoid any complications and that this will get you back to a better relationship with your body.
Isn't it the pits when your own body doesn't seem to fit you?
All the very best.
Douglas+
 

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Discussion Starter · #8 ·
Thank you for all your kind comments and concern. I'm sure things will get back on track once I actually get the steroids - no sign of the prescription yet. I've had flares before but this one has definitely been the worst and is lasting longer than I've had before which is probably why I'm so worried about it all.

Lis
 

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Dear Lis
I am really sorry you're flaring so badly and your worry is very understandable. When we're in remission we start feeling secure and naturally stop thinking all the dread what if's that go through our minds when first diagnosed until we get effective treatment or fall lucky and the disease abates of its own accord. It really can be a very nasty, very sneaky disease.

I hope the Pred does help and if not perhaps you can get back to the doctor who might consider letting you have a higher dose in those circumstances.
I know it's a bit complicated but the risk benefit equation does change. Of course there's the double frustration factor of finding yourself so weak when you have so much to be getting on with and a job to do, plus the appalling inadequacy of care in your area.

It might be a good moment to push for an anti depressant especially if the Pred isn't effective. Probably not a good idea to start taking both around the same time or you can't be sure what's causing what, either good things or not so good.
It was good to chat the other day and catch up on 'real' life. It's so crazy to have to wait for the prescription to come through.
Keep in touch ! Best of Luck !

Love and hugs
Clare
 

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Discussion Starter · #10 ·
Thanks Clare. You don't know just how good it was to chat to you and Katharine. You both made me feel so much better and reassured that when the prescription comes and I get started on the steroids things should improve. I'm trying to be positive about things but to be honest I'm not happy with having to wait. I'm not sure anyone should be made to suffer the level of pain I have for over 12 weeks and no help. It's not as if they are waiting for test results - I've been diagnosed for over 5 years now. Nothing pain wise has improved but psychologically I feel much better - so a million thanks.

Lis :)
 

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Discussion Starter · #11 ·
update

I've finally got the steroids. I've been taking them for about a week now and the swelling in my joints has started to go down. I feel a bit better too and even found myself with a bit more energy today - so did a bit of Christmas shopping. My GP has been great - he's so understanding and is doing his best to help me cope with all this. I'm so glad this forum exists as you are all so supportive too. Things are far from back to normal but at least I think I'll get there eventually. I have to go back to the rheumatologist at the beginning of March which seems a long time but at least I've got a good GP now who I've got confidence in.

Lis :)
 

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Hi Lis,

I am happy to hear the Prednisone has given you some improvement. Take care not to overdo during the holidays so you don't end up back where you were.

:flower2:
Lazylegs
 
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