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golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/11/2009 7:09 PM (GMT -7)   
I feel like I'm going round in circles. My sero negative arthritis is still flaring, I'm on humira and methotrexate for that, have a mouth full of ulcers from mtx plus I'm losing my hair!!! My back is becoming a real hassle, getting harder and harder to bend. I went back to my doctor and she put me back on the NSAIDS with another drug to help settle my stomach (I was getting bad stomach pains on them) plus tried me on another anti depressant (endep.) This last one is to help me sleep as I have major trouble sleeping and I did sleep on it plus it pushed my arthritis pain down, but the trouble was I couldn't wake up either. I need to do alot of driving and I found I kept forgetting where I was going!!! I became too scared to take my pain meds becaue they also make me sleepy and then my back got so sore I decided to ditch the endep, now I'm back where I started. Not sleeping from pain mainly in my hips and knees and struggling during the day mainly from my lower back. I feel like the biggest grouch around my family, I'm usually such an optimist, I feel like I've gone through so much angst to decide to take all these toxic drugs and they're not working!!! Its hard to find the energy to decide what to do. Do I go back to alternative treatment? Do I try another anti depressant? Do I just accept to live on pain killers? Am I being unrealistic in my expectations of the arthrits drugs? Should I just accept my current level of pain? Any advice would be much appreciated, golitho.

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 5/11/2009 7:32 PM (GMT -7)   
Golitho,
I took a medication ones to keep me away during the day when I first started taking methadone a long time ago as it made me so sleepy. Geeze, I can't remember the name but it started with a P and it's used for that very reason. It was developed for people w/ narcolepsy I think it's called? People who fall asleep all the time anywhere at any time. It will come to me if someone else doesn't think of it first. Maybe you can ask your Doc about it. I know it sounds bad like the upper<>downer syndrome but they say it's safe and is widely used. I appologize, I'm getting worse at remembering all the time. Does anyone know the name of this stuff? It may be just what you are looking for??? I'm really sorry you are having such a tough time. Hang in there. You are on the prayer list tonight!
Your Friend,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis somewhere in the Far East and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" on their way to the Middle East w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/11/2009 8:51 PM (GMT -7)   
I think Pete is talking about Provigil. It is basically a stimulant.

More later.

Skeye

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/11/2009 9:26 PM (GMT -7)   
Hi golitho!

Yes, the medication Pete is referring to is Provigil. I take narcotic pain relievers and also fatigue is part of my fibromyalgia. When I caught myself dozing off at a stop light on the way to work one morning, that did it for me. I had read about it on the forums somewhere so researched it. Next doc trip I asked about it and if he thought it was reasonable for me to try it. He said sure and I've been taking it ever since. It has made a huge difference in my life. I can still take my pain meds and not worry about driving.

I would suggest starting out with a low dose to see how you do. You don't want to get 'buzzed up' from the stuff...just get you back to a normal state of alertness. This medication is prescribed for people who have narcolepsy, sleep apnea, and/or drug related sleepiness. That last one would be us. This way you could go back on your medications and get some quality back in your life. It has worked for me...but it's up to you and your doctor if it's right for you.

Hang on friend (extending hand)...we'll get through this together!
Chutzie

here's a link to their page for more information...and even a coupon
http://www.provigil.com/
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
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anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/11/2009 9:30 PM (GMT -7)   
Golitho, I am truly sorry you are having a hard time. I know that the elavil that I take for insomnia I have to take it early enough in the evening (around 7:00) so that it won't be so hard to wake up in the morning. At first, I was taking it right before bedtime and it always made me feel funny the next morning. When I started taking it early, I noticed that it wasn't so hard the next morning. That may not be the same way with this med. you are taking. I am not familiar with that one. But maybe you need to call your doctor and let them know what is going on. They may have some better advice for you. I also went all day without taking the pain meds, I wouldn't take them while working. That isn't wise to do. By the time I got home in the afternoons, I was completely miserable, almost shaking I hurt so bad. So don't do that. Talk to your doctor and explain what all is going on. You need to get some relief from the pain, but still be able to function during the day. The driving you described sounds pretty scary.

I am sorry that I don't have any good advice for you. But I am sure someone will come along shortly that will help more. I will be thinking about you and will keep you in my prayers. Hang in there. Don't get too discouraged. And no, you shouldn't have to accept your current pain level and live like that. It sounds like some adjustments need to be made with your meds.
Anice

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 5/11/2009 10:25 PM (GMT -7)   
Golitho
Wow Your Doctor got out the big guns for your arthritis, methotrexate is very potent stuff it has been around for quite a while and is a chemo drug for Cancer. As I am sure you know Golitho impeccable dental and mouth hygiene is a must when your on that medication! Like so many of the drugs now days they were originally made to treat one thing and they they found if you changed the dosage that same drug is good to treat something else. Reqip and Mirapex are excellent examples, the original medication was used to treat Parkinson, they lowered the dosage and renamed it and use it to treat Restless Leg Syndrome.
Golitho I don't think you do need to talk frankly with your doctor and together establish a reasonable goal for control of your arthritis, ask your doctor if your expectations are to high or unreasonable, maybe you will have to alter your goals some what. But if you do, it should be done together with your Doctor, the same goes with managing your pain, you really need to sit down with your Doctor and talk at length about your pain, and then as a team come up with a reasonable plan to keep it under control!.

Provigil works very well for some people, like Chutzie, others it is not as effective, so if your Doctor prescribes it for you, don't get your hopes up real high, and then if it works well for you it is bonus, and if it doesn't it won't be such a let down. It is a very potent drug though and should be used with caution.

I do wish I had better advice to give you, or better yet, just be able to make your arthritis and pain go away! But since I can not do that, I will just tell you that I do care and I do wish you all the best, and hope that you will start feeling better and have less pain.
Your in my Prayers
White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 5/12/2009 4:13 AM (GMT -7)   

I too am sorry your having such a time.

Here is an idea that might help you with the lethargy and it doesnt involve anymore meds and no prescription needed.

It was suggested to me years ago when I was having such a time with falling asleep in walking states on methadone that a good solid dose of B-12 would do the trick. I have not ever been a biggy on alternative meds since I was a medical prof. for 30 years but it was worth a try.

I went to a local drug store that carried a large variety of vits and mins and aked for help from the pharmacist and he directed me to a B-12 that was dissolvable sublingual. I took it in low dose as reccomended and titrated up until it working and I was no longer falling asleep with my hands in dishwater and waking up 15 minutes later not even realizing I had been asleep,anyone on methadone can atest to this is possible and probable. I still years later swear by my B-12 and have found to have far more energy I thought possible and rarely do I fall asleep on my feet. I do have regular every 3 month labs to make sure I am not getting too much B but so far even at this dose I have not had a problem. The Doc says our bodies are pretty good at getting rid of excess. It seemed highly unlikely to me this could help at first but after talking it over with my PM it made far more sense in the how it worked. Especially those of us with acid reflex or on some kind of digestive meds even tums can cause us not to store certain vits and mins as normal folks.

Hope you find some answers soon as well as relief.


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 5/12/2009 5:21 AM (GMT -7)   
Yep, I knew someone would come up with the name of that med. It sure worked for me but I stopped taking it after tapering down. I'm not sure you have to taper, I just thought it would be a good idea and better let me feel if I was getting used to the methadone, I still don't get enough sleep and dring huge amounts of coffee and somehow get by w/o the provigil although sometimes I think about asking the doc to prescribe me some but never remember when I'm in the Doc's office! There have been a couple good suggestions like B-12. Also, coffee works for me, and there's the added bonus> I love good strong black coffee! I grind beans every morning, sometimes I treat myself to Kona or Sumatrian but ussually some good quality Columbian nand picked by my friond Juan! God bless Juan Valdez!!! Keep us updated, there's got to be something> don't give up!!!!!
Your Sleepy Buddy,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis somewhere in the Far East and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" on their way to the Middle East w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/12/2009 6:27 PM (GMT -7)   
Hi Golitho,

Boy, it sure is tough not to be sleeping (sadly I know all too well), but it does seem to be a regular component of CP. sad Has your doc tried you on any medications for sleep? I know you mentioned that you are sensitive to their effects, but there are a bunch out there & maybe you can find one that helps you and produces reasonable side effects. The same goes for antidepressants. There are a lot of them out there & sometimes it takes trying several to find one that helps. Alternative therapies are always an option, and can be used to supplement your current treatments. I too seem to get my hopes up too much about a certain treatment, but I find that it is at least better to have something that you are working towards than nothing at all. It sounds like a nice long chat with your doctor is in order. Best of luck!

Skeye

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/12/2009 8:14 PM (GMT -7)   
Thanks everyone, I think I will ask my doc about sleeping tablets, good idea Skeye, I think the anti depressants seem to be givng me too many side effects and the benefit isn't really happening. I'm not depressed, after all, she was using it as a nerve blocker but it just doesn't seem to really work that well, I still need the pain killers  so it sort of feels like I'm taking all these extra drugs for nothing. Thanks Pete, Chutz, Anice and White beard with the advice about provigil, I'll talk to her about that too. And thanks Angel, I'll ask about the B12 too as she has me on several supplements like vit D, calcium, zinc and fish oil because the methotrexate wipes them out or stops me absorbing them or whatever. I probably need specific blood tests again ayway. Last night I woke up with severe pain in my hands, theres always some new symptom!!! So I've made yet another appointment with my rheumy too, not till June though. I get so sick of seeing Drs. As for alternatives I think I'll have to pluck up the courage to see an accupuncturist, I hate the thought of the sick feeling you get when they twiddle them. I really hated it the last time but feel I can't procrastinate any longer it may help with all this inflammation I seem to have everywhere. I've stopped eating chocolate (oh the pain of no chocolate) in the hope that less sugar in my diet may help??? Hey White Beard no one has mentioned teeth to me, does mtx destroy teeth??? Or is it because it affects my ability to absorb calcium? I was told to be careful when I was on the prednisone but not on mtx. Yet another appt to be made...such is life
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