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Lupus, Sleep apnea, and Provigil???

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Lupus
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Posted Today 5:39 PM (GMT 0)
OK guys, I went to the rheumatologist today. Man you should have seen the small book she was holding in her hand when she pulled a pharmacy report on me! It was huge! Her first question to me was..."OK, so what all have you been on for this past year?"....

Yeah, so anyway, I was honest with her, told her what I had been doing and how I came off the pills, she was blown away at the fact that I did a cold turkey home detox....curious even, as she said she had never had a patient go thru home WD's from my levels of use. " I would have tapered you if I'd have known..", yeah, nice to know now, but the thought of still trying to taper right now compared to just having it all out of me is scary. I do not think I would have made it with a taper, I am much too sneaky for my own good sometimes.

I let her know that although I do HURT,and  I stay SORE, that my real problem deep down is the energy levels. That is what made me fall in love with my pills, they made me feel like I could get up and go....I had energy for the first time in two years with them, and that is why I didnt want to give up on them. To my surprise, she actually understood that thought process, and I realized that maybe she wasn't as bad as I thought she was when she lectured me so many times on dropping the narcotics.

So here is where we stand now, she has ordered some sleep tests, checking for sleep apnea, b/c this too could be a reason for this chronic fatigue I have. From there I will have two options, if I do have SA, then that will get treated however it is that they treat it, I'm not sure. BUT...if not then she is offering to give me Provigil. A drug given to narcoleptic people to help them stay awake, she says it would be a fast acting dose that would get me going in the morning and then wear off by bed time. I;m going to look into this abit, but any info on it would be appreciated.

I talked with her about my night panics where I wake up by jumping out of the bed, scared to death of nothing at all. I had a script for xanex that I rarely took,because it knocks me out with a quickness, dead to the world... but she thinks that Klonopin will be better for me, not as strong, shorter acting, etc. 

That's about the extent of it, we did a CBC, and lots of autoimmune specific blood tests, so I will let you know how those come out soon. I feel good about this visit today, I was worried that she would just label me as a junkie and not want to help me with the fatigue, she is still not offering me much in the way of managing my pain, not her cup of tea I suppose, she swears that the Plaquenil will help. She wrote my script for the name brand and said I am intollerant to the generic so hopefully my insurance will cover it. I think that perhaps I should find myself a good orthopedic doc that can help me out with the knees, hips and back.
Posted Today 8:30 PM (GMT 0)
NO! She will help you with your pain from the knees, hips and back. The ortho would help if it was a bone problem or an injury . . . but the rheumy takes care of the connective tissue pain. You just need to work closely with her. Most rheumies work with a combo of plaquenil and anti-inflams. I see that you are taking a type of pred . . . so maybe she could let you increase the dose temporarily until the plaq kicks in and then taper? We need to let our docs know at EACH visit EACH issue we are still dealing with. If you feel that it is too long till your next appointment, then call her and ask if you can do something to manage the pain until the plaq has a chance to get into your system. Good for you on being honest with her and with yourself!! Keep us posted!! Blessings!
Posted 12/1/2007 4:00 PM (GMT 0)
She is helping me in respects of the actual "autoimmune symptoms", but my knees are very bad off.


I have very little cartlidge left in them and it has caused the bones to rub and grind together. When I bend my knees, you can actually hear the grinding sounds, in fact, my last doc got the heebie jeebies anytime he felt them bend. My rhuemy also seems to think that I might benefit more from a ortho doc for them. Guess I was a little vague about that. She also suggested I talk to them about my carpel tunnel...

Sometimes I get the feeling that she doesn't want to do anything above and beyond the steroids and plaquenil. She hasn't even tried any type of arthritis medication for me, plus she refuses to add the Lupus or Fibro diagnoses to my records...leaving me with just inflamitory arthritis on my charts and it is really not good for my Disability claim....all of my other health records show it, but not her, she claims to be doing it for insurance purposes, so they wont hold it against me or something like that. She is my first rhuemy, and I really just dont seem to click with her, but she is the only one I can see right now.

Every rhuemy around requires a PCP referral before adding you as a patient and my PCP INSISTS that she is the best around and I should only go to her, but then again, he is a do nothing for you kinda doc too. And to make it worse, her office is an hour from my house. I feel like I am stuck on the "let somebody else take care of it" train when it comes to my docs. Rhuemy says PCP should manage pain, PCP says its rheumys job...and I am not even trying to get narcotics here....they have both treated me this way from the start, which is how I wound up going to the doc that was writing me way too many pain meds. 

All of this backs up my desires to find a ortho doc, just to see if he or she would have anything to offer me...I am searching for another PCP, who I hope may refer me to a closer rheumy. It is unfortunate that so many of the docs in my area are so uneducated when it comes to taking care of folks like us. I actually had to take an article from the LFA to my allergist to prove to him that I shouldn't be taking the live vaccine allergy shots  he ordered for me....I asked him over and over if it was ok to have them with Lupus, he assured me they were, and within an hour of the first shot, I was curled up in a ball with symptoms like the flu...guess that is why everyone says to educate yourself well on your disease.

OK...this is getting long,and I am sorry for that, just needed to vent I guess...by the way, does anyone have experience with Provigil?

  

Posted 12/1/2007 4:59 PM (GMT 0)
I think everyone responds to drugs in different ways. I was prescribed provigil before I was diagnosed with autoimmune. It made my sleep at night worse even though I would take it at 6 am. Alos, it made me pretty anxious. My rheumatologist does not like to prescribe it because he believes it stresses out an already compromised immune system. He also recommends for his patients to limit or not have caffeine for the same reason.
Posted 12/1/2007 9:37 PM (GMT 0)
I've tried provigil and at first we started at just 100mg a day it didn't do anything to help my fatigue so we upped it. Of course no results, long story short, I ended up at the max dose of 400mg daily and still no help. Make sure you take it first thing in the morning as it can upset your sleep at night.

It did nothing for me I'm sorry to say, but each person reacts differently to meds. Plus not only do I have lupus and RA, but I've got a rare blood cancer. The MDS causes me severe fatigue and so I think it would have maybe worked if I didn't have the MDS.

Good luck,
Barbara
Posted 12/15/2007 6:12 PM (GMT 0)

Hi Susie, I just happened to run accrossed this post of yours. sorry I didn't notice it before. well actually I was in the hospital at the time. My best friend has leukemia and she is in remission but she takes infusions once every 3 weeks. She is very very cautious about taking any type of meds but she absolutely can not live without the provigil. She gets frustrated with her doctor because he only gives her a small amount at a time and she has to pay a certain part out of pocket. I think she gets 30 pills and is supposed to break them in half and 30 have to last her 2 months. That's all I can share with you about that.

I hope you are doing better I know this post is a couple of weeks old.

hugs

carol

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