[Meriel]

Hi again,

Thanks for all your answers to my questions recently...I'm afraid I have another one! I was diagnosed with Lupus in September 2008 through blood work and symptoms (mainly joint and muscle pain, mouth ulcers and fatigue). I was put onto 200mg Plaquenil (this has just been raised to 400mg daily) plus amitriptelene and also Mobic (an anti-inflammatory).

The Plaquenil hasn't kicked in yet although I do feel less flu-ey than I used to. Anway, my muscle and joint pain got really bad in mid December and I have just been put on a short course of prednisidone (20mg daily) to try and get me out of this bad phase. I woke up last night and noticed something different...some of my joints weren't aching and were no longer as tender This is the first time I've felt any improvement in my health for months. A lot of my body still hurts but I've no doubt that the steroids have helped a little. I have a few questions. Do the improvements steroids bring last after you stop taking them (I'll be taking them for a week only to begin with)? Does fibromyalgia respond to steroids?

My rheumy thinks that I might have fibro as well as Lupus but he says we won't know until I've been on the Plaquenil for longer to see if the pain responds to this. I thought I'd read somewhere that fibro doesn't respond to steroid treatment but I might be imagining this? Are there any other ways to distinguish Lupus and Fibro symptoms?

Sorry for all the questions...I'm very confused !
Thank you!
Best wishes
Meriel

 

[sam101360]

Meriel:

I can't tell them apart either. I dont know how they can tell, except fibro pain is more muscular that joint (I think). Steroids only helped me while I was on them, they usually have you taking something and the steriods assist until the other med can kick in.

I hope this all offers you some relief soon...plaquenil can take quite a while to kick in...6 weeks to many months...

Stephanie

 

[Lily]

Hi Meriel,

I don't have Fibro but many here report that changes in steroid dosages upset their Fibro for a little while whilst weaning down. How you will distinguish that from perhaps finding it hard to come off steroids due to persisting Lupus symptoms I don't know though

As Steph said with Lupus steroids usually only help whilst you are on them. If problems continue then he may have to keep you on low dose Pred until the Plaq starts to kick in. Play it by ear though some people respond a little earlier to Plaq than many of us.

love
Lily

 

[LolaLola]

Steroids don't help Fibro pain, BUT when you decrease the dose it does make the fibro pain worse for a while. I find my problems are more Lupus pain than Fibro. I feel that when all the Lupus symptoms are out of the picture due to high steroids then the bit I have left is Fibro plus the effects of doing all those neglected jobs because of feeling a bit better. I do know other people though he find the Fibro pain worse than Lupus.
Hope this doesn't confuse you more.
x Lola

PS The fact that the nature of your pain has changed is a good positive sign.

 

[Joandublin]

Hi Meriel

I have been on low dose steroids for over three years now. I have Lupus and fibro. Everytime I try to come off the steroids the fibro pain seems to kick in unmercifully. Im like Stephanie. The steroids only seem to help when I am on them. As soon as I reduce even 1mg from my usual 5mg dose I get quite intense all-over body pain.

Right now Im attempting another taper and I got down to 4mg but have gone through weeks of pain to get there. When I started to feel half human again last week, I dropped another half mg to 3.5mg and once again the pain is kicking in everywhere.

I cant say with absolute certainty that its all fibro pain though. Most of it seems to be muscle related but some of it is in the joints, e.g. my hips, ankles and finger joints.

Here is a small image of the classic Fibro Trigger points. See if any of these 'pain points', feel familiar to you. For me the most painful ones are the ones around the buttocks area, the arms (particuarly the right one), the shoulders and the spots over the left breast area.

The other symptom of fibro is poor or disturbed sleep. Do you suffer from this? If so make sure your Rheumy knows. There is a drug treatment for Fibro - Lyrica. Unfortunately it didnt agree with me - my stomach bloated out hugely - but others have had great success with it.

Take good care
Joan:rose:

 

[Meriel]

Hi

My sleep is ok although when my Lupus gets bad the pain makes my sleep quite disturbed. I can definitely say that I have pain in all of those trigger points but I also get pain in lots of other areas too (fingers, toes, ankles...well everywhere really ). I reduced my steroid dose yesterday and I can hardly move today, I'm not sure whether it's the reduced dose or because I have a virus (I saw my GP today and he thinks I have a virus).

Thanks,
Meriel