Not again... :(

[ribitribi]

As most of you know my lupus is a mild one.. Last Saturday I got my last prednisolone pill and I was feeling very very happy for that. But the last few years every time I was trying to stop the prednisolone the pain was coming back and I had to start over again.

The last few weeks I did not have the best mood, I was feeling stressed and worried and there where many nights that I could not even sleep properly. I have an anxiety that I dont understand where it comes from!

So from Saturday I have pain again... a few fingers, my back and the back of my heel.

I went to the gym today as I was ok, I didnt try too much I just needed it. I am feeling tired and disappointed. I don't want to start the prednisolone again..

The doctor always telling to wait for about a week to be sure that I am on flare cause it might just be the body's adjustment without prednisolone.

What if I get rid of the bad mood? What if I try to cheer up!

I should have known better after 16 years of lupus but every time I feel bad.

[Sher78]

I think a lot of the time the anxiety & depression comes from the fact that we know what's going 2 happen & that MAKES us anxious, plus the pain that we tend 2 go through is bound 2 make us feel down, even depressed. Hope things perk up soon x

[Purpletop]

I agree with your doctor, it will take you at least a month, if not more, to get rid of the withdrawal symptoms and although it isn't pleasant, once you do it and get through the other side you'll have a much better quality of life. I know it is scary without the prop of the steroids but you can do it, just give it a go and try not to get yourself in a panic that a flare is coming.

[Jaxqueline]

You sound quite similar to me. My lupus is referred to as "mild". I have a supply of prednisolone for flare ups but haven't taken it in a year as my severe flare ups only last about four days so I never know when to take it and then half way through I wonder whether it is worth taking it just for a day or so. I always regret afterwards not taking it, I tend to have monthly cycles of flares. Re the depression, I suffer from this and am on Venaflaxine from my consultant which helps but would rather this wasnt a long term thing. It's good that you can get to the gym, I think change of scene is definitely a good thing. When I feel down my first instinct is to hibernate which is the worst thing. I have a dog and having to walk her gets me out and is very therapeutic. I am also able to do yoga which I find relaxes and calms me and helps me physically too. I haven't quite got the hang of the mindfulness/meditation bit but I am getting there and hope that that will help. Good luck and take care. x

[Sue2803 in reply to Jaxqueline]

My Rheumy told me that Lupus is classed as mild if it doesn't affect your major organs like kidneys etc. Severe muscle, joint pain and all the others bits and pieces that go with SLE still classes it as mild. I find this hard to believe because the pain is awful a lot of the time and doesn't feel very mild to me at all.

[Hidden]

The depression might actually be a result of coming off the steroids, ribitribi?

I have read that it can take a year for your body to adjust to being steroid-free. Certainly I have been horribly down in the dumps and bad tempered while tapering prednisolone. I think maybe you need to just wait a while and try to be a bit philosophical. Steroids are awful things (my GP tells me this) - so it may be worth persevering for a bit longer.

[copdber]

My consultant put me on Imuran as a steroid spareing drug it's working well for me with no side effects at least none that I can see. I do have to have monthly bloods done to check for liver function and full blood count. I too have "mild" lupus with no organ involvement.

[ribitribi]

Thank you guys for the useful information and the understanding.

The good thing is that for the next two months I will be working part time on something that I really love to do and that distracts me from my health condition. I wish this fear, anxiety and pain comes from my psychology and fear of having a flare up again..

Let's see how it will work according to the new things in my life. Next week I am meeting my rheumy for my casual appointment I will talk about this with him too.

Fingers crossed!

Hugs and kisses to everyone

You are making me stronger xx