sleeping problems

[JennyT]

Hi everybody,
I ques i can say that my weg's is in stable condition at the moment:biggrin1:
but i have a lot of sleeping problems lately:sad:
anyone have any suggestions

thanks jenny t

[elephant]

Jenny glad your WG is in stable condition.
Jenny are you on prednisone still? What medicines are you taking? How much caffiene are you drinking?

[Geoff]

Hi Jenny,
I found sleeping a real issue even when my pred levels came down. I have been taking Zoplicone sleeping tablets for the past year. I am informed they are non addictive but I would, like you, be pleased to hear of an alternative. Too many tablets going into my body!!

[Sean48]

Hi Jenny

When I can't sleep I listen to my breath. Its a form of meditation. It takes practice but it works. Have you ever tried meditation? I don't do it anymore on a daily basis but I still do it for sleeping. People use different techniques other than breathing but you can get books at the library or even take classes if your interested. Like you my WG is in stable condition too.
Best of luck for sleeping....

[Sangye]

Jenny, this may sound silly but what kind of sleeping trouble are you having? Some common patterns are:
-- can fall asleep alright but wake up later and can't get back to sleep
-- can't fall asleep at all
-- can get into a near-sleep but don't fall into full sleep
-- can't sleep because mind is racing

[JennyT]

cann't fall asleep at all because mind is racing

[elephant]

Are you on prednisoen JennyT? That can make your mind race. Or are you thinking of " would ifs?" I had that pretty bad and it seemed to get better once the prednisone dropped.

[JennyT]

i am on 7 mg prednison for awhile now and haven't had this problem before yet at least not as bad.
also on 500mg cellcept
I do think alot about what if it comes back it has been in remission for awhile now
U don't trust you're own body anymore

JennyT

[elephant]

You are on a low dose of cellcept too. I am on 7 1/2 mg of prednisone. Will they keep you on 500 mg for life?

[JennyT]

no i think he is taking me slowly of the cellcept

[jola57]

These meds produce a yoyo effect. I am tired and can't keep my eyes open or I can't sleep for days at a time.

[Luce]

I'm have issues staying awake at work, I get to the afternoon and have major fits of yawning and feel that if I closed my eyes I could just drop right off. My boss has noticed and has said that I need to pace myself (hard to do in a job that is mostly reactive and involves lots of trips around the office) although I feel he is generally losing patience with me being ill. I think he believes because I'm working full time I'm cured and he has the attitude that I'm using the Wegs to wriggle out of some of my duties.

I sleep so much, usually an hour or two on the couch in the evenings and another 7 hours or so overnight with lots of afternoon napping at weekends. I sleep well, it just seems that it's never enough.

[elephant]

Luce, what medicines are you on now? I still need to nap too almost everyday. It could be medicines, or we just need more sleep. Have they check your hemoglobin? Thyroid? It could be many things..

[Luce]

I'm only on 6mg pred, blood pressure meds (candesartan 32mg) and stomach protector (omeprazole). I had two doses of Rtx in April but no immunosuppressants since. I was anemic back in March and had IV iron, Hb was 11.4 last time around so it worked as my docs are happy with anthing above 11 due to the kidney involvement.
Just had blood taken today for an appt on 7th Sept so of course I will mention it then, did bring it up at last appt but as Hb and ferritin were ok the doc put it down to long term steroid use and didn't think he could help.

I'm sure even during a flare I had more energy and could stay awake longer than I can at the moment, the tiredness wouldn't kick in until 7pm or so but now its 2pm. They've not checked my thyroid, although my Mum has underactive thryoid problems.

Really don't want to have to reduce my hours at work as I can't afford it, not sure what I can do though.

[Lightwarrior]

I'm only on 6mg pred,

I'm sure even during a flare I had more energy and could stay awake longer than I can at the moment, the tiredness wouldn't kick in until 7pm or so but now its 2pm. They've not checked my thyroid, although my Mum has underactive thryoid problems.

Really don't want to have to reduce my hours at work as I can't afford it, not sure what I can do though.

Don't rule out adrenal insufficiency. If you are getting tired in the afternoon this could be it. I was running slight temps and being totally wiped out by 2 pm. Our bodies don't make cortisol because of the long term prednisone use. IV solumedrol and an increase in my prednisone for a few days and I felt much better.

[Luce]

Ok thanks Lightwarrior, maybe that's where my doc didn't quite make the connection and he dropped me down from 7.5mg to 6mg which has probably made it worse. I quite often feel like I have a temp but the thermometer says I'm fine, it's like a hot flush I guess. I have also been known to resort to a big mug of coffee when I'm really bad and it helps, although no need for the nag as I know I'm not doing myself any good in the long term.
I'll hang on til my appt as I'm not confident enough to mess around with the pred by myself

[RCOSSIO]

In the beginning I had some sleep insomnia...docs says it was due to the pred (who knows) Anyway one way to cure it is to count some sheeps backward and if that does not work, well then whack then as they jump over the fence I never really like them woolly animals anyway.

Good luck I know sleep deprivation can be...well...quite EXHAUSTING!

[RCOSSIO]

i meant sheep...sorry for the incorrect tense

[woodsman1972]

I am recently diagnosed, but am told I have been carrying Weg's for about a year when I started having sinus problems. Am on 60mg Prednisone a day right now due to a heavy flare up. Sleeping is completely out of whack. I sleep about 3 hours then lay awake for another 3. Always tired, but the steroids make me feel like I need to get up and get busy. Very strange sensation. I just try the tried and true herbal tea and measured breathing. I'll still be awake in 3 hours anyway. Good luck. I know it's exhausting.

[Sangye]

Luce-- that sounds like classic adrenal insufficiency. Six mg pred will wear off by 2 pm. Stress (and caffeine) demand more from the adrenals, so if they're struggling to keep up, that would completely do them in. When you're tapering pred, caffeine will damage you immediately, not just in the long-term. Your adrenals are trying to come back to life, and adding caffeine is like hitting them with a whip. I don't mean this as a nag but to give you info you might not have.

[Lightwarrior]

I'll hang on til my appt as I'm not confident enough to mess around with the pred by myself

You are correct, don't mess around with the dosing yourself, you may need to make a phone call before your appointment to get direction.

[Sangye]

Yes, I totally agree with Lightwarrior. Going in the wrong direction with those low doses can create havoc. Make sure you emphasize to him/her that this fatigue is beyond what you experience even during flares. That got my attention!

[elephant]

Luce, I agree with Lightwarrior and Sangye.

[Doug]

...and good luck with the boss, Luce.

You are right about unrealistic expectations from bosses (and co-workers, who can complain) when we get back to work. We look OK, but we still are in a medical state oftentimes, where the drugs we take contribute to health but also ruin sleep patterns, leave us weak or vomiting from both ends (I cleaned that up for the squeamish, if there are any left after all we go through!), and generally leave us as if run through the wringer.

I hope the UK has laws that protect you from dismissal for things you can't control. Perhaps others can point you to UK laws that protect people with disabilities or long term health issues in the workplace. If you feel that your boss may undervalue your work for reasons you have exactly no control over, as I think I understand you do, then document, document, document. You need the work, not just for money, but for self-worth, your human dignity, maybe even for the joy of work. (I hope you have a place like that!)

Having pressure to quit or do more than you are able at this point puts stress on you. That is exactly what you don't need now.

[Luce]

Thanks everyone, I'll make sure to discuss adrenal insufficiency with my doctor as it does sound like that might be my problem. Just because the wegs is in control doesn't mean you have the green light on tapering pred, I do wonder if I should stick it out (without any more coffee) to try and coax those adrenal glands back into functioning. I want to be off pred more than anything and the longer I let those adrenals snooze I think the harder it will be.

As for the boss, we have plenty of laws in the UK to protect people like me and the company has been very understanding and I'm in no danger of being made redundant due to ill heatlh. It's just on a local level with my boss that I'm having a few issues, we going through a merger with another local council and my dept could be deemed uneccessary so my boss wants to make sure we're airtight and indisposable. I thiink I'm seen as a weakness.
I've decided to visit the occupational health nurse that visits the offices and see what she has to say, there is a facility where my manager can approach her and ask for more information on my health issues and what effects the disease has on my ability to work (she'll write to my GP and consultant). As far as I know he's not bothered to do that and if I can get him better informed then I'm sure it'll help him understand.

PS: Doug, I love my job!

[Sangye]

Luce, it's true that the longer you're on pred the harder it is to get off it. But trying to taper off too quickly and causing adrenal insufficiency actually lengthens the time it will take you to get off it because it further depletes the adrenals.

In June I found myself in that position--having tried tapering off pred from 4mg, I got in trouble below 1mg. I didn't know what was happening. I bumped it back up a bit after several days of feeling extremely tired, but it didn't bring me out of it. I continued in adrenal insufficiency for 3 weeks by the time I told Dr Seo. He said the only way to fix it is to go back up to the starting dose for 6 months before attempting to taper again. He said if I'd corrected it within a few days (max 3) I could have tried tapering again in a couple weeks. Beyond that, the adrenals are so stressed there is no way to continue a taper or even just bump it up a tad. They actually require more pred than they did when you began.

You might find it helpful to read through the thread where I discussed all this. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/864-lessons-learned.html See if it looks like what's happening with you.