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View Full Version : Anyone else haqve trouble sleeping?



mikebonella
07-22-2009, 10:57 PM
I sure as hell do. Wondering if its common and why you think you cant sleep if you do have this problem.

Jack
07-22-2009, 11:37 PM
I have no trouble at all in falling asleep, I can do it anywhere, anytime. The trouble is that I sleep for a maximum of 2 hours at a time due to the problem I have with coughing. I also tend to get up at around 5 in the morning for the same reason or some other problem.
My solution is that I grab a few minutes in a chair after everyone has left the house in the morning and then also have an hour laying on my bed after lunch.

Sangye
07-22-2009, 11:47 PM
Are you on any pred, Mike? Even the smallest doses gave me insomnia.

After a life of never having a moment's difficulty sleeping (falling or staying asleep), insomnia was one of the first signs I had that something was wrong. Once the Wegs was diagnosed, the pred continued the insomnia, of course. In the past few months, the insomnia was creeping back, which was a sign to me that the Wegs was flaring. It's not a universal sign of active Wegs, though.

mikebonella
07-22-2009, 11:49 PM
I have trouble falling asleep and once I do, I rarely get more than 5 hours unless I take a sleep aid (ambien). Im not sure how much of it is wg and how much of it is due to other stress in my life. Just curious if others had the same problem. I know that when I was on steroids, the sleeping was worse.

Doug
07-23-2009, 12:35 AM
The older you get, the less sleep you get, primarily due to increased aches and pains. I don't know what aches and pains you have associated with WG (joint pain, cramps, breathing issues, etc.) but they alone can affect sleep quality and duration. Myself, knee aches (WG or non-WG ~ I don't know!) often thwart sleep. I recently read that people regarded to be in remission often have symptoms of an active flare. I believe it. I've often referred such pain to my doctor, but test results indicated I was still in remission. Go figure!:)

mikebonella
07-23-2009, 01:41 AM
Yes, when the pain is bad, it definately affects sleep. For me, I just am not that tired at night though. Not in THAT much pain right now. My new doc said that just because the anca count is really low right now, that it doesnt necisarily mean that the disease isnt flaring.

Luce
07-23-2009, 03:21 AM
I have trouble sleeping, I'm 25 and not in any pain from the Wegs.
I also don't stay asleep for more than 2-3 hours if I'm lucky and I put this down to an incredibly weakened bladder from the cyclophosphamide. I can go to the bathroom up to half a dozen times overnight and suffer a lot from cystitis-type feelings which can get really bad at times.

I also sleep really lightly which would normally frustrate me but it did mean that I actually heard the half-dressed, very drunk man that crawled through my front room window the other week! It was very warm overnight and we have a ground floor flat so left the window open - this guy saw it as an invitation to come in and take a nap on the couch!
My fiance was useless, he thought I was talking and fidgeting in my sleep as is quite normal for me and I thought we were being robbed. Not quite sure what came over me but I stormed into the front room and flicked the light on. A man in a t-shirt and underpants stared bleary eyed back at me and asked me what I was doing in his house!

That was a night to remember...

Jack
07-23-2009, 03:57 AM
You should perhaps increase your fluid intake Luce. The weak bladder feeling is probably due to irritation from the cyclophosphamide and can be damaging. I used to have to go a couple of times a night when I was taking it and got so that I could almost sleep walk through it without waking.

Sangye
07-23-2009, 04:05 AM
Okay Luce, I guess I shouldn't be laughing, but seeing as you're okay and he was a pretty benign character, I'm laughing myself silly.

On a not so funny subject, what do you mean by cystitis-type symptoms? You can email me about it if you like.

Luce
07-23-2009, 05:05 AM
The intruder incident turned out to be hilarious as he wouldn't leave until we'd searched for his trousers, shoes, wallet and cellphone - none of which he'd come through the window with (at 2.30am I might add!). Luckily he was docile and had obviously got the wrong house, not sure how we'd have handled it if he'd been aggressive.

Thanks Jack, I was making myself drink about 2.5 litres of water a day when I was on the cyclo but as I've been on CellCept for about 6 weeks now I've relaxed that quite a bit.

The cysitis symptoms have been with me for months and it's pretty much frequent urination, pain after urination and a constant low-level uncomfortable feeling needing to urinate. I went to my GP after a horrendous incident overnight that left me running for the bathroom every 10 mins only to pass a miniscule amount, I drank 3.5 litres of water overnight to try and flush it through. GP tested a sample but it didn't show any blood and my renal doctors didn't seem too concerned.

Thanks for the offer of emailing you Sangye but I'm not shy, just hoping the lads don't mind too much!

Jack
07-23-2009, 05:12 AM
Although it is only well known for affecting women, men can suffer from it too (me!). My heart used to sink when it came on at night and I just wanted to sleep instead of spending a couple of hours going to the loo. Drinking plenty always worked for me, but it was still very unpleasant. Have you tried drinking cranberry juice? It is supposed to be very good.

Sangye
07-23-2009, 05:19 AM
It sounds like you could have a persistent bladder infection. Have you tried something as simple as cranberry juice? If you can't get straight cranberry juice (no sugar, no other juice types added), you can get it as a supplement.

Also try probiotics. I imagine you've been on antibiotics as a Weggie and may need to repopulate your gut with the good guys. Take at least 5 billion on an empty stomach.

Luce
07-23-2009, 05:26 AM
Thank you both for the advice and your understanding.

Looks like cranberry juice is the way to go - shame I really can't stand them!
I will definitely look into supplements though as it's really starting to get me down.

I'm on Bactrim which according to the GP is the main antibiotic for treating UTI's - what sort of probiotic would you suggest? I can only think of the yoghurt based drinks that are always advertised here.

PS: Jack, I should have known. There doesn't seem to be much you haven't experienced!

Jack
07-23-2009, 05:42 AM
PS: Jack, I should have known. There doesn't seem to be much you haven't experienced!
Yes, it's getting embarrassing. It must sound like I'm making it up or am a hypochondriac (I wish :rolleyes:). My episodes date back to the time before I started taking Co-Trimoxazole, so perhaps this is one of the things it has helped to eliminate.

I do wonder about the long term effects of antibiotics though. I sometimes wonder if some of my gut problems are due to this. I might try giving them a break for a while and see what happens.

coffeelover
07-23-2009, 05:49 AM
Sleep? What is that?

Luce
07-23-2009, 05:53 AM
Haha Lisa, you've reminded me of a Barenaked Ladies song:

"Who needs sleep, well you're never gonna get it. Who needs sleep, tell me what's that for?"

coffeelover
07-23-2009, 05:55 AM
Like it Luce!

Sangye
07-23-2009, 06:02 AM
The amount of probiotics in yogurt doesn't even approach what you need to recover from antibiotics. Even one round of antibiotics can create imbalances that persist for years if not corrected. If you're on antibiotics, you should stay on probiotics. If you're off antibiotics, take probiotics for a full 6 weeks at least.

For a good probiotic, go to a health food store and ask for the medium-priced brand. Too cheap and there aren't any live bacteria. Too expensive and you're paying for stuff you don't need.

Many bladder infections are yeast-based, not bacterial. Even the bacterial ones can usually be treated better with natural remedies, without upsetting your entire system. Cranberry juice works because it prevents bacteria from adhering to the bladder wall, and it also changes the pH of the urine, which neither yeast nor bacteria like.

Luce
07-23-2009, 06:20 AM
I think I love you Sangye, I will confirm my affections once I've had a chance to try this out.

Just a thought - neither of these things will interact with the drugs I'm taking for the Wegs will they?

I take 1500mg Cellcept daily, 40mg Omeprazole, 480mg Bactrim, 7.5mg pred and 32mg of Candesartan for blood pressure.

Sangye
07-23-2009, 06:31 AM
LOL-- I hope you won't love me less if you still have bladder problems. There aren't any Hallmark cards for that. Who else but a Weggie would buy the card "I love you, even though my bladder's still a mess!"

Cranberry juice and probiotics are fine with those drugs. No need to go crazy with the Cranberry juice. If you're drinking it, 3 oz twice a day is probably plenty to begin with. It's potent stuff!

Luce
07-23-2009, 06:39 AM
Ok I've just had a quick google at probiotics and have only just understood your "take at least 5 billion on an empty stomach" comment!
I thought it was a bit of a throw-away comment meaning take as much as you can, rather than the number of bacteria the pills contain! D'oh!

I promise to still love you even if this doesn't work for my messy bladder.

pberggren1
07-23-2009, 09:15 AM
Luce, what is Omeprazole?

crackers
07-23-2009, 10:11 AM
phil,omeprazole has also been marketed under the names losec and prilosec.it's a gastro drug used for ulcers and the like.i also take it to counteract the effects of the meds.i didn't take it one day and the acid pains in my stomach were awful.
john.

coffeelover
07-24-2009, 04:58 AM
I too take prazole twice a day and Zantac every night for my acid reflux/gerd situation. Helps, but still not perfect.
Darn Meds! Reak havoc on a body!

Lisa

Luce
07-24-2009, 06:06 AM
Phil

As others have mentioned Omeprazole is to protect my stomach from pred eating away at the lining. I also found it helped with some of the nausea while taking cytoxan.
Several times my docs have told me that I shouldn't really need it but I nearly die of indigestion every time I try to stop taking it. Even cutting back to 20mg is really noticeable.

If you're suffering from these problems then get yourself some, I couldn't be without it now.

Jack
07-24-2009, 06:49 AM
I take Lansoprazole which is a very similar drug and like you, I can't get by without it.

jola57
07-29-2009, 05:52 AM
Luce, are your realy on 480mg Bactrim, I'm on 80.

Doug
07-29-2009, 09:37 AM
And I'm on a generic version that's abbreviated SMZ/TMP DS tablets 800-160. Who knows what we're taking??:D


http://www.prescriptiondrug-info.com/forums/view_drug_submission.asp?Drug=smz%2Ftmp+ds+800-160&Page=110771

Sangye
07-29-2009, 09:48 AM
Doug-- that's Bactrim Double Strength.

Doug
07-29-2009, 10:03 AM
Do you suppose the DS stands for....!? Boy, do I feel lame! Thanks!:p

crackers
07-29-2009, 10:08 AM
ds.got to be doug spielberg.wow fancy having your own personalized meds.
john.

Doug
07-29-2009, 12:21 PM
Not really. Just pass a few bucks (or Euros, which are preferable anyway!) under the table, and you can get "them" to name anything after you! In this case, I got it for free because they wanted to try addicting weggies to the generic form (DS ~ "They'll think it's for Doug Spielberg. Hee! Hee! We'll get them hooked on the double strength stuff, then we can have the Taliban burn the poppies fields!"):)

crackers
07-29-2009, 06:48 PM
damn "them" and their cunning plan.
john.

Luce
07-30-2009, 12:38 AM
I'm on 480mg of Co-Trimoxazole, I used the name Bactrim as I was being lazy :D

Doug
07-30-2009, 02:38 AM
I'm on 480mg of Co-Trimoxazole, I used the name Bactrim as I was being lazy :D

Me too, Luce. I don't even bother with the DS/Double Strength business. Oh, sometimes I'll speak of "generic form of Bactrim", in case any lawyers are around. Ha!:cool:

Luce
07-30-2009, 02:46 AM
I'm surprised Jolanta is only on 80mg - I didn't think it came in a lower dosage, although technically I think my dose is written as 400/80mg as it contains 400mg of sulfamethoxazole and 80mg of trimethoprim.

Doug
07-30-2009, 03:13 AM
damn "them" and their cunning plan.
john.

I know, I know. That's why I'm having that special Air America flight out of Afghanistan make an unauthorized drop off at 42.6N 102.52W. "Them"! :eek:

p.s. Yesterday, I had to offer proof to an insurance company that my 95 year old mother isn't a closet terrorist or drug lord who'll take the money (hers...!) they are going to pay out to her and launder it. There is zero common sense any more! Granted, I can't vouch for her activities all times of the day and night. (Maybe she'll meet the Air America flight in her wheelchair. Better be a noisy plane: she's virtually deaf.)

sumsum5587
08-06-2009, 03:28 PM
i take the same thing sulfamethoxazole-tmp ds tabitp 160/800 (bactrim)

GeorgiaInOhio
08-06-2009, 07:17 PM
haha, its 5:16am here. i woke up about 3:30. Gonna try to get in a few hours before my son wakes up. Ya, trouble sleeping, it sucks! Sorry, just had to throw in my 2 cents. BLAH!!! Stupid prednisone!

jola57
08-09-2009, 01:36 AM
Hi Georgia, i think you will see that a lot of us are sleeping alone these days partly due to the prednisone nights. after 25 years it hurts to sleep alone:( but my hubby is a light sleeper and has to be in the OR at 7 am. I don't think he can tell his patients if he is not 100%, sorry my wife woke me up:eek:

Sangye
08-09-2009, 01:41 AM
One of my dogs sleeps under my bed, directly under me. He's the one who "talks" and grumbles like an old man. I can always tell when I'm having a particularly rough night, when I hear him start grumbling down there. It's pretty bad when even your dog can't get some rest!

jola57
08-09-2009, 01:49 AM
Ha, ha, ha

Cindy M
08-09-2009, 02:41 PM
I have been having alot of trouble sleeping lately. I lay in bed til 3 or 4 in the morning, tossing and turning. Then it messes up the next day because I am so tired I cannot function, I have a nap in the late morning/early afternoon but then at night its the same thing. It is very frustrating.

jola57
08-09-2009, 02:45 PM
For me it comes in spurts or if I miss the time that I am tired. I just go downstairs, plop on the couch and watch TV or watch computer movies. Then when I get drowsy just fall asleep on the couch.

Jack
08-09-2009, 03:37 PM
I accept disrupted sleep as part of my "new normal" and don't worry about it too much or feel guilty or embarrassed about sleeping during the daytime.
A typical pattern is -

Bed at 10:30 asleep by 11:00
Wake every couple of hours until 5:00
Get up, shower and dress
Sleep in a chair for an hour
Lay on bed and sleep for an hour after lunch

On a bad day, I could also doze in a chair at other times too.

coffeelover
08-09-2009, 11:56 PM
This has probably been said and I am too lazy to go through all the threads right now, but, my rheumy suggests taking the meds that keep me awake in the early morning to help with the nightly sleep factor.
I also take trazadone to help keep me asleep which works about 30% of the time, but that is better than nothing so I am satisfied for now.
I, Like Jack have accepted interrupted sleep as the normal from now on and like Jack again, I realize when I am tired, I need to sit in a chair and take a quick doze.
I am not good at this yet, but should be!
This lack of sleep is why those of us on this support group are on at all hours of the day:p
coffeelover ( oh yeah....should give up the caffeine too!)

Doug
08-12-2009, 01:45 AM
One of my dogs sleeps under my bed, directly under me. He's the one who "talks" and grumbles like an old man. I can always tell when I'm having a particularly rough night, when I hear him start grumbling down there. It's pretty bad when even your dog can't get some rest!


How did I miss this one! I repeat: go to Sangye's blog! She's updated it with new blogs that are hilarious! Following that is the story on healthcare that she mentioned elsewhere that was on NPR. An excellent story.(Sangye, you're lucky Pat:mad:ch doesn't make you sleep in the front:(room. Dang! A dog needs his rest!)


http://sweetnotalways.blogspot.com/ < < This get's you to Sangye's blog

Jack
08-12-2009, 02:28 AM
I have recently started to take Paracetamol with Codeine to help me with my campaign to reduce the steroids, but now I can't stay awake! For the past two days I've spent most of the afternoon asleep in a chair. This has got to stop!
I'm down to 8mg of pred now and don't feel any worse than usual so I'm sure I'll be OK with just the odd paractamol. :)

Doug
08-12-2009, 03:09 AM
Paracetamol and Codeine Caplets (Boots Company plc) - Summary of Product Characteristics (SPC) - electronic Medicines Compendium (eMC) (http://emc.medicines.org.uk/document.aspx?documentId=7899)

I'd not heard of this drug, so checked on it. Are you sure you should be taking this particular drug, Jack? It looks like people with liver issues are vulnerable to the worst of it. Take a look, deep into the attached link.

Jack
08-12-2009, 04:56 AM
Sounds about as scary as the other drugs I take. :eek:

I have decided to do without it anyway, but the odd paracetamol helps me to walk in the mornings so I'll stick with those. In any case, when my reduced steroid regime kicks in, I won't need them anymore! :rolleyes:

Sangye
08-12-2009, 05:50 AM
Doug, that was pretty funny, about Patch making me sleep in the front room. I live in a 1-room basement (kitchen in the same room), so by sleeping under my bed, I guess you could say he sleeps in the downstairs area!

Thanks for the nice comments about my blog. :) I've been in so much pain lately, I've been writing a lot just to distract myself.

jola57
08-12-2009, 06:51 AM
Sangye, your pain is our pain so share!!!! Wish I could make it better. What did the specialist say?

Sangye
08-12-2009, 07:23 AM
I've been on the cytoxan for 4.5 weeks now, and the last 2-3 weeks the joint pain has been increasing terribly. It hasn't been like this in 3 yrs, since the Wegs was diagnosed. It isn't the usual "overdoing it" joint pain--it's the full-blown pain that is just there no matter what. My lungs are doing better, though. No coughing up blood, etc...

I haven't talked to my Wegs doc about it yet, because I've been waiting to see if it improves as the ctx is getting up to full speed (that happens at 4 wks). I do blood work every 2 weeks, and last week I was in awful pain when I did it. He'd call me if anything was off with it (eg. increasing inflammation). He's very good at staying on top of that and has me in his highbeams right now. He's checking with my insurance to see if they'll cover Rituximab, just in case we need it.

The Wegs was already rising when I started the ctx, so I think it just hasn't gotten contained yet. I'm going to see how it goes this week. If it's still awful by next week, I'll call him. I'm really trying to avoid the pred. Not just due to the usual horrors of the drug, but because of its ability to increase intracranial pressure.

Jack
08-12-2009, 07:43 AM
Sorry to hear about all your problems Sangye, it does sound like more Pred is what you need at the moment, but not of course if it causes more problems than it cures. As you know, I'm only too familiar with the conflicts involved with taking medication. :(

Hope you start to feel better soon.

Sangye
08-12-2009, 07:56 AM
Even though I'm way over the weight limit, my doc only put me on 150 mg ctx, instead of 200 mg. I think--all things considered--I'd rather increase the ctx if necessary than use pred.

If it's just a matter of waiting on the ctx, I can live with it. It's pretty bad, and I can't do things I could do a couple months ago (which was seriously limited!), but I can get through anything if it's temporary.

Jack
08-12-2009, 08:07 AM
Personally, I'd rather take my chances with Pred (or are my experiences with it one of the factors putting you off? ;) ). Cyclophosphamide scares the hell out of me and I believe the risks of taking it are cumulative. I know that my own consultants were unhappy about its extended use. But you know all this anyway so must do what feels right for you.

Sangye
08-12-2009, 08:31 AM
No, your experiences aren't scaring me with the pred-- I have a good healthy fear of it on my own.

My intracranial pressure is just barely kept under control. If the pred increases it, it can go from severe pain to total blindness or death in one day. It almost did before. The only way to treat that is a spinal tap, which is bad enough, but since I'm on blood thinners, I'd have to go off them for a few days or be paralysed. I'm already seriously pre-disposed to more clots, but especially with active Wegs, so going off blood thinners even for a day is a deadly risk.

It's a horrible little box I've got myself in. Worse than The Room, if you can imagine.

jola57
08-12-2009, 08:57 AM
Sangye, unfortunaely both cytox and pred must work together which is a bummer but if cytox hasn't worked its magic by now its a clear indication that pred is needed. With my last bout last year I was on pred but not cytox for 2 months and in pain if you remember it was only when they put me back on pred and cytox that within two weks I was good. I honestly would't know what to suggest, only that you and your docs know better.

Sangye
08-12-2009, 09:05 AM
I thought ctx and pred had to go together, too. My Wegs doc explained that the reason why they use ctx and pred together is that pred really knocks down the inflammation while the ctx gets to work suppressing the immune system. In my case, the Wegs wasn't that riled up to require pred to knock it down. My doc feels the ctx alone can do the trick.

Remember, the ctx has only been fully working for 1/2 week right now. So it isn't clear to say it won't be sufficient all by itself. Given that my lungs have improved during the past couple weeks and I'm no longer having constant sweats, I just don't think the Wegs is going nuts on me. Lungs and sweats are big indicators for me. I'm just taking it a day at a time right now.

jola57
08-12-2009, 09:08 AM
I just hope it does the trick for you. I am an empath and feel strongly when any of you guys feel pain. It just like it was me. so get better OK?

Jack
08-12-2009, 02:27 PM
What about non-steroidal ant-inflamatories such as Ibuprofen?

Sangye
08-13-2009, 12:31 AM
Ibuprofen is a big no-no if you're on blood thinners. I avoid acetominophen unless I have pain that is undoing me. It doesn't work that well, and is extremely hard on the liver.

A couple times apple cider vinegar has helped--when it's moving into the muscles (not typical for me).

jola57
08-13-2009, 05:57 AM
Funny you should mention apple cider vinegar, my cousin in Calgary swears by it for all type of aches.

Luce
08-13-2009, 09:04 AM
Sangye, what about 2 or 3 pulses of ctx?
Really hit it hard, then switch back to the oral?
I don't blame you for avoiding the pred - I'm down to 7.5mg now and am desperate to get off altogether.

Sangye
08-13-2009, 09:25 AM
I don't know. I'm trusting my doc to figure it out. He's very conservative about using these drugs. A lot of his Wegs research is on decision-making for Wegs treatment. I had less pain today, so maybe it's turning a corner.

jola57
08-13-2009, 02:16 PM
I am keeping my fingers crossed. Sending good vibes your way

Sangye
08-13-2009, 11:45 PM
Good vibes arriviiiiiiing.....NOW!!! Got 'em! Thanks, Jolanta! :)

pberggren1
08-14-2009, 12:50 PM
Sangye,

I'm sad to hear you are going through such rough joint pain. Is this the only symptom you are experiencing with the WG's right now? Which joints are affected?

I have a friend of mine that takes apple cider vinegar as well. He's a total health nut - no meat, dairy, sugar, pastries, cookies, cakes, gluten, etc.

I've had 4 relapses to date and my Rheumy has always used the Cytoxan and Pred together. From talking to other people in the past and doing much research about WG, I thought that the 2 were almost always used together in a flare of WG.

Anyway, I hope the Cytoxan kicks in for you soon and gets you feeling better with no joint pain. I wouldn't want to have to go back on the Pred either. I am currently on 20mg per day. I don't have a scheduled appointment with my Rheumy until December 10. So I will probably stay at 20 until then. What do you think? I would like to start decreasing off the Pred right now. Maybe I should send an e-mail to my Rheumy discussing this?

Sincerely,
Phil Berggren

Sangye
08-15-2009, 12:08 AM
Hi Phil,
I think we'll be seeing more and more divergence from the typical protocols as time goes by. Weggies are staying alive longer because of the new drugs, but as a result, the long-term problems are becoming more evident. The Wegs research is leaning more towards conservative approaches, and understanding the nuances of Wegs.

December sure seems like a long way off for you! (Unless you just saw your doc) Did s/he want you to stay at 20 mg until then? I wouldn't change it without asking.

pberggren1
08-15-2009, 08:25 PM
Sangye,

I last saw my Rheumy back on June 10 when I had that lung infection. My Pred was down to 20mg back then and had been at that level since about sometime in March if can remember correctly. I think she wants me to stay at 20 until I see her again in December. Maybe I should send her an e-mail asking about tapering off.

Sangye
08-15-2009, 11:41 PM
Is your doc a Wegs specialist? To keep you at 20 mg for 6 months automatically like that seems odd to me. If she saw you more often and re-confirmed that dosage, then fine. What other immunosuppressant are you on? Isn't it working well enough for you to decrease the pred more? I really think you need to have a talk with her so you understand her reasoning, and she understands your questions.

jola57
08-16-2009, 01:09 AM
It does seem to be a long time to be on 20 since march to december, would she advise you over the phone if you could start lovering by 2.5 every month until you see her?

pberggren1
08-16-2009, 01:16 AM
Dear Sangye and Jolanta,

I'm quite sure she has about 8-12 other WG patients. I've been on Cellcept since January. I'm taking 1.5g twice a day. I feel relatively OK. I will contact her office on Monday and see if I can talk to her or get her to call or e-mail me back. Thanks again you guys for your input.