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Inky
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249 Posts
Discussion Starter · #1 ·
Hi all
I would really welcome your comments:

I am fairly new to the forum. I was DX in 2000 and it has been pretty up and down since then. I have "mild" ;) Lupus, Hughes and SS and currently take Mepacrine (can't take other antimalarials because of eye damage!), Arcoxia for the joint inflammation plus Paracetamol and dyhyrdocodeine for the pain. Also aspirin (to help the sticky blood) and lipitor (high cholesterol) and Losec (stomach protection). I have been on steroids but came off them 18 months ago. I also take fish oil and glucosamine to help the joints and cholesterol prob.

I was managing fine(ish) in that I could work part time from home, do a bit of housework and go out very occasionally if I stored up some energy and rested for a week after ha ha. Now I seem to need to be in bed for most of the time. I get up for an hour so so at most and have to retreat again.

I got cold after cold and then a fluey thing in the winter/spring and have felt truly dreadful since. I struggle to do any work, I wake in pain and can't sleep because of pain. I am utterly fatigued. I do one thing, like cook or an hours work and feel pretty immediately dreadful. Hot flushes have come back, they went a good year or so ago. (I am 53). Rheumy changed my antiinflammatory to Arcoxia about a month ago and I felt much more capable for around 2 weeks but then I started feeling totally crap again. :mad:

Am I being unrealistic to try to work part time (from home, not physically very demanding) and also wanting to go out more than once a week without being exhausted. I literally break out into a sweat if I do more than bare minimum. And I fell over this week which I am sure is because I am so fatigued.

I know the rheumy is trying to limit side effects of drugs, and he knows I am trying to avoid steroids if I can (high blood pressure when I was on them). But how on earth do I weigh up the possible gain in well being and mobility against the possible side effects? I really do need to be working again as we are really struggling for money after six months of illness.

I am thinking of going to the doctor to discuss pain medication options. Has anyone any other suggestions. Is there any alternative to steroids? Should Itry yet another nsaid? I want to sort this out and get some ideas together before Rheumy appt in Sept.

Thank you in advance.
Sara
x
 

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Hi Sara,

Sorry you are having a rough time at the mo, I have similar symptoms to you the last week has been really rough not been out of bed much although I have been given medication to try I am waiting for some test results to confirm SLE. I am on some anti-inflams and strong pain killers but they just take the edge off the pain rather than getting rid of it? It may be worth speaking to your GP and finding out about pain management centres?

Regarding working do you claim DLA??

I hope you can get some relief soon, take care.
 

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Inky
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249 Posts
Discussion Starter · #3 ·
HI Beci, yes I do get DLA which helps, but the little bit extra I earned really made a difference to our life as my partner does not earn too much and prices are shooting up! I agree about pain killers, they take the edge off rather than "kill" it. I am typing this because the pain meds are working again but they don't last through the four hour gap before taking the next, and pain is awful if I wake in the night and can't take any more. I hope your test results come through soon. Nothing worse than waiting. I think knowing what is wrong is half the battle. I just worked out I have been living with this illness for 8 years since DX and off and on before then without knowing. They haven't all been as bad as it is at the moment. And it usually gets better after a prolonged bad patch. Just this bad patch has dragged a bit.

Thanks for replying. Bet there are a lot of us on this list in bed at any one time ha ha.
Sara
 

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Nettyunicorn
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133 Posts
Hi Sara,
I'm sorry you feel so awful right now! I think we all tend to have a close relationship to our beds! Its awful and can make you feel guilty, but please dont. Rest is good!!!!!!

hope you feel better soon.

Netty
Devon ukxxxxxx
 

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Hi sara

I'm sorry you're struggling at the moment..I can definitely empathise with you as even my 'normal' (good) days still consist of pain & stiffness in my joints and feeling fatigued etc..I try to get on with my life as much as possible, especially as I have children too, but some days rest is the sensible thing to do :)

Has your rheumy suggested immunosuppressants (sp?) at all sara? they lower your immune system so it's not attacking your body & the one I am on (azathioprine aka immuran) also relieves my joint pain...If you continue to feel bad it may be the next step for you?

good luck with your appointment and I hope you feel better soon.
let us know how you get on.
:hug: love karen x
 

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Hi:

I agree with Karen, talk to your doctor about steroid sparing treatment.

There are a bunch of 0ptions these days, Methotrexate, Imuran, Arava, CellCept.

These are either mild chemotherapy (not what they give cancer patients) or immunosupressants (what they give to organ transplant recipients). Both of these type of medication suppress the immune system without destroying it.

The use of these can reduce inflammation and pain considerably, they can also assist with the fatigue.

I must say I have not found anything that will get rid of the fatigue...if I did I would be shouting it from the mountains!!! for all my lupie friends!

I hope you get relief soon - Stephanie
 

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Normal...................what's that???

Sorry your feeling so bad.

No guilty feelings allowed.

Rest and relax.:wink2:
 

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The one and only
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I am sorry you are having such a rough time right now...

When you figure out what normal feels like,,, could you please tell me! :lol:

I pray that you start having some pain free days!

Much love....
 

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Inky
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249 Posts
Discussion Starter · #9 ·
Thank you for all your support. I am going to discuss steroid sparing drugs with the rheumy. I know because my lupus is mild he was sort of hoping I could cope with mepacrine and a nsaid. I meet people in my lupus clinic who have more 'serious' lupus - hospitalized flares, organ involvement etc who seem actually fitter than me in terms of energy available and some of them are holding down full time jobs which I find amazing. Their health must overall be more reliable than mine because I never get a run of health strong enough and long enough to be employable. It has struck me that this may be because they are on stronger medication. My other concern with methotrexate and cellcept etc. is the increased risk of infections. I seem to pick them up much more easily than most and wonder if these drugs would lower my immune response to colds, bites, throat infections and winter viruses all of which knock me off my feet and into bed with alarming regularity.

I am getting on with things here and coping very well really, but I feel that things have slipped over the last 6 months. I know I have felt much better with lupus than I have this year. I am not expecting to suddenly be fit and well, I would just like to get back those occasional days when I can almost forget I am ill, as I used to get them. Even if I did find I could not move the next day :)

Thanks again to everyone.
Sara
 

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Mildly stricken; blue
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100 Posts
Hi Sara!

I love your description:

"I was managing fine(ish) in that I could work part time from home, do a bit of housework and go out very occasionally if I stored up some energy and rested for a week after ha ha. Now I seem to need to be in bed for most of the time. I get up for an hour so so at most and have to retreat again."

I'm alternating between these two, and neither is acceptable!

Is there something that could cause the constant fatigued state, like, something causing an ongoing flare? Is this normal for mild lupus? Is it just a matter of knocking our immune systems down a few levels with short-term meds, and hoping that sticks?

I haven't learned how to manage the netherworld of fatigue, nor that of being removed from a more active life. I've had depression for most of my life, so I've always been waiting to become more involved and busy, not less!

I'm so thankful for this forum. I start thinking it's all in my head, because I assume some of it must be, because no one else acts this way or is this way. And then, sometimes, it will occur to me to come on here, and I read everyone's posts, and I don't feel so alone in this. Thanks, Sara, and everyone else, for being here and reaching out.

Please keep us posted on any new medications or treatments, and how they work out!
 

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Inky
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Discussion Starter · #12 ·
Hello hardcandy

Well I am not alone that's for sure. Thanks for replying.

I am not sure this is normal for "mild" lupus as I have felt much better than this whilst still knowing I was not functioning anywhere near normal. Now I am out for the count, breaking into dripping sweats just typing this (sorry if that was a gross description).

I cannot even face going down to the ground floor of our apartment block to get the post at the moment my energy and strength so low. (Plus a bright red and very wet person arriving there might freak the concierge out!). ;) And this is when the journey there and back is mostly just being in a lift.

I honestly thought i was managing - using rest periods, meditation, spacing of activity, healthy diet, all the things I have learnt over the past 8 years or so as coping mechanisms. As you say the frustration is in watching life go by without seeming part of it. With me I think the flu-like illness in February kicked the lupus into increased activity and it has not died down to its "mild lupus normal (ha ha) level". :mad:

The lupus nurse had hoped that changing my anti-inflammatory might "trick" the increased symptoms into going away. It worked for a few days is all. Doctor tomorrow to discuss this, then I will also phone the lupus clinic and see if together something can change to get me back into the world. My bed is very comfy, my partner very lovely but it would be nice not to want to be in bed and also to want to see friends again and travel further than the kitchen or bathroom.

Thanks again for replying, I will of course post any answers that might miraculously appear.
as you say this board helps so much.
Sara x
 

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Inky
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Discussion Starter · #13 ·
Thanks Lucscinda
Sara x

Luscinda;514681 said:
No... I don't have normal days either

Sijnk, I hope your new medications work well for you!!!!
 
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