Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Finally received the RA diagnoses last week - a diagnoses that I knew all along, for almost three years now. Have been treated for Lyme, Rocky Mountain Spotted Fever - Its a bittersweet ending to a long three years.....My Rheumy put me on Medrol to start while we are awaiting some other test. My question to all of you more experienced RA sufferers is...have any of you had significant difficulty sleeping while on steroids? I haven't slept more than two hours a night in the past three nights. Its magnifying all of my physical symptoms and I am miserable !!!! P.S. I also am a nurse of 17 years....what is the commonality here?!?!?! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 Bonnie, if you have RA, you need to be on something besides a steroid. Has your doctor not mentioned a DMARD, such as plaquenil, methotrexate, etc.? Steroids can have a whole bunch of bad side effects, especially in such high doses. Just because he WANTS to help doesn't mean that you should trust him. Maybe it's time for a second opinion. Sue On May 26, 2009, at 8:26 PM, Bonnie wrote: > Holy Moly! Went to see my Rhuem for follow up visit and he wasn't > happy about my hands still being inflamed... He up'd my medrol > from 6mlg a day to 16 mlg's 3 times a day! AHHHH! He said I need > to try it for one week.. > He's also sending me for a full body CAT scan and ultra sounds of my > breasts and thyroid... Anyone know what he's looking for? He told > me he was just taking precautions... > The most medrol I've taken was 16 mlgs a day, and it made me really > nasty/B-tchy... I was a complete nervous wreck constantly annoyed > over everything, not to mention the weight gain... I feel like > crying just thinking about it... I have no idea what this amount > will do... I'm even afraid to find out... Road rage-----here I > come! (lol) > > Has anyone else been on this high of a dose? He says he's > attempting to knock the crap out of my system... I think he's > trying to send me to the looney bin! But I have to trust him, as > he really does seem to want to help... Oh God Help Me!!!!! (and > those that need to live with me for the next week) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Sue... I take Rituxin infusions, methlytrexate, planqunile and folic acid.. Enbrel did not help me as much as I needed... I do not have strait RA... I was diagnosed as having Undifferentiated Connective Tissue Disease... Which is a mix of RA, Lupus and Raynaulds(possibly another problem also, but its not clear enough yet for my Dr. to diagnose... This Rhuem took me in when I couldn't walk and with in 6months had me able to walk again... Where other Rhuems were misdiagnosing me and not helping me one bit.. That is why I trust him. I'm just really nervous about the large amounts of steroids and the affect its going to have on me... Thanks for your reply Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Bonnie I was not aware that Ritixan and Enbrel could be used for Mixed connective tissue disease, another name for what you and I have got. I take Methotrexate 30mgs, the highest dose my Rheumi will give, was on Plaquenil until my gp decided I was on too many dangerous drugs, feel worse without it; Prednisone but whenever I drop to 6mgs I flare badly, not going there again X3. I was also taking Celebrex but I keep becoming anaemic so it was stopped.I ache from head to feet. I go back to my rheumi on Monday We will have to have a long talk about how to get the pain under better control. Between it and frequent migraines which refuse to respond to all sorts of medication, I have had enough. Thanks for listening, Bev from Oz From: Bonnie <tiredtaz@...> Subject: [ ] Re: Medrol Received: Wednesday, 27 May, 2009, 9:39 PM Sue... I take Rituxin infusions, methlytrexate, planqunile and folic acid.. Enbrel did not help me as much as I needed... I do not have strait RA... I was diagnosed as having Undifferentiated Connective Tissue Disease... Which is a mix of RA, Lupus and Raynaulds(possibly another problem also, but its not clear enough yet for my Dr. to diagnose... This Rhuem took me in when I couldn't walk and with in 6months had me able to walk again... Where other Rhuems were misdiagnosing me and not helping me one bit.. That is why I trust him. I'm just really nervous about the large amounts of steroids and the affect its going to have on me... Thanks for your reply Bonnie Need a Holiday? Win a $10,000 Holiday of your choice. Enter now.http://us.lrd./_ylc=X3oDMTJxN2x2ZmNpBF9zAzIwMjM2MTY2MTMEdG1fZG1lY2g\ DVGV4dCBMaW5rBHRtX2xuawNVMTEwMzk3NwR0bV9uZXQDWWFob28hBHRtX3BvcwN0YWdsaW5lBHRtX3B\ wdHkDYXVueg--/SIG=14600t3ni/**http%3A//au.rd./mail/tagline/creativeholi\ days/*http%3A//au.docs./homepageset/%3Fp1=other%26p2=au%26p3=mailtaglin\ e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Hi Bev! thanks for the response... Our diseases are very similar... Embrel helped, but not enough.. (Sorta like taking Tylenol or Advil for a migraine.) We then tried Rituxin and it helped wonderfully after the first month, but then it only last 3months after that... The bad news is that Rituxin is only given every 6 months. So now I'm in Hell and my ice cubes are melted. After two nights and one day of the increased Medrol, and I have quickly realized I'm not going to get any sleep. I've also discovered that my pain has increased immensely... In the past I lost sleep, but felt better. I am at a loss as my whole body (instead of just the joints) now aches and I can barely stand it. Enough complaining.... I'm sorry you are feeling so badly... If you'd ever like to chew my ear, please don't hesitate to e-mail me privately... Our conditions are very similar and due to that, we can probably relate very easily. The next time you see your doc, you should ask about trying more aggressive approaches such as the enbrel or rituxin. If he/she says no, than at least you know its not a possibility... but I did get slight relief from both... If the Rituxin continued to work, I'd be very close to " normal " now... Hope you feel better today Bonnie P.s Where is Oz? > > > From: Bonnie <tiredtaz@...> > Subject: [ ] Re: Medrol > > Received: Wednesday, 27 May, 2009, 9:39 PM > > > > > > > > > Sue... > I take Rituxin infusions, methlytrexate, planqunile and folic acid.. Enbrel did not help me as much as I needed... I do not have strait RA... I was diagnosed as having Undifferentiated Connective Tissue Disease... Which is a mix of RA, Lupus and Raynaulds(possibly another problem also, but its not clear enough yet for my Dr. to diagnose... > This Rhuem took me in when I couldn't walk and with in 6months had me able to walk again... Where other Rhuems were misdiagnosing me and not helping me one bit.. That is why I trust him. I'm just really nervous about the large amounts of steroids and the affect its going to have on me... > Thanks for your reply > Bonnie > > > > > > > > > > > > > > > > > > Need a Holiday? Win a $10,000 Holiday of your choice. Enter now.http://us.lrd./_ylc=X3oDMTJxN2x2ZmNpBF9zAzIwMjM2MTY2MTMEdG1fZG1lY2g\ DVGV4dCBMaW5rBHRtX2xuawNVMTEwMzk3NwR0bV9uZXQDWWFob28hBHRtX3BvcwN0YWdsaW5lBHRtX3B\ wdHkDYXVueg--/SIG=14600t3ni/**http%3A//au.rd./mail/tagline/creativeholi\ days/*http%3A//au.docs./homepageset/%3Fp1=other%26p2=au%26p3=mailtaglin\ e > > Quote Link to comment Share on other sites More sharing options...
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