Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 I went to a neurologist who highly suspected IBM but the diagnosis was never officialy made. I still don't have an official diagnoses, but my symptoms do match IBM very well. Bobby > > I started taking Mevacor about 12 years ago and then switched to Zocor > then Lipitor then Vytorin. I may have even had others I can't > remember. I started having muscle problems about 3 years ago but now I > am told I have inclusion body myositis. Has anyone else had this > diagnosis? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 My CK blood level was rising and noticed when my lipid profile was done. I was refered to a arthritis doctor and stopped all statins and at first my CK went down then back up so I was sent for an MRI the a muscle biopsy and they said it was IBM My legs are so weak I can hardly climb the stairs. I can still walk but I am unsteady on my feet and I have only fallen once but I had to crawl back to my truck to hold onto the bumper to get back on my feet. Some days I feel better and think that I am getting over it but then I get too much exercise and it takes me 2 days to recover. > > > > I started taking Mevacor about 12 years ago and then switched to > Zocor > > then Lipitor then Vytorin. I may have even had others I can't > > remember. I started having muscle problems about 3 years ago but now > I > > am told I have inclusion body myositis. Has anyone else had this > > diagnosis? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 why did you keep switching your statins?From: poultneyboy <d-mhannah@...>Subject: inclusion body myositisLipitor Date: Wednesday, November 12, 2008, 9:38 AM I started taking Mevacor about 12 years ago and then switched to Zocor then Lipitor then Vytorin. I may have even had others I can't remember. I started having muscle problems about 3 years ago but now I am told I have inclusion body myositis. Has anyone else had this diagnosis? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Your description sounds exactly like what I have been thru. If I exert myself too hard it takes 2 days of bed rest to recover. After long periods of rest I think I am pulling out of it, untill I exercise again and then become too fatigued to function. They wouldn't do a muscle biopsy on me. Bobby > > > > > > I started taking Mevacor about 12 years ago and then switched to > > Zocor > > > then Lipitor then Vytorin. I may have even had others I can't > > > remember. I started having muscle problems about 3 years ago but > now > > I > > > am told I have inclusion body myositis. Has anyone else had this > > > diagnosis? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 My Dr. kept switching me to a different statin to improve my numbers. When I went on Lipitor I started havine chest pain but it was not heart related so he switched me to Vytorin since that was Zocor and Zetia which I could tolerate. Then they noticed my CK going up. > From: poultneyboy <d-mhannah@...> > Subject: inclusion body myositis > Lipitor > Date: Wednesday, November 12, 2008, 9:38 AM > > > > > > > > > > > > I started taking Mevacor about 12 years ago and then switched to Zocor > > then Lipitor then Vytorin. I may have even had others I can't > > remember. I started having muscle problems about 3 years ago but now I > > am told I have inclusion body myositis. Has anyone else had this > > diagnosis? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 I have been taking honey on my cereal in the morning instead of sugar and it seems to give me a little more energy. The Dr. just started me on prednisone but that has only been this week so I can't see it helping yet. If that doesn't work there may not be much else they can do for IBM. I still have hope that staying off statins I will improve and maybe return to normal. Dr. says it should have cleared up by now but one other Dr. said he has seen it take a year or more. Good luck to you. > > > > > > > > I started taking Mevacor about 12 years ago and then switched > to > > > Zocor > > > > then Lipitor then Vytorin. I may have even had others I can't > > > > remember. I started having muscle problems about 3 years ago > but > > now > > > I > > > > am told I have inclusion body myositis. Has anyone else had > this > > > > diagnosis? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Are you making sure that you are taking your COQ10 300 mgs daily. I stopped the poison on April 28th this year and feel so much better. I believe that I too had Rhabdomyalasis as all my levels were raised and I had severe jaundice. Good Luck Pamela > > > > > > > > > > I started taking Mevacor about 12 years ago and then switched > > to > > > > Zocor > > > > > then Lipitor then Vytorin. I may have even had others I > can't > > > > > remember. I started having muscle problems about 3 years ago > > but > > > now > > > > I > > > > > am told I have inclusion body myositis. Has anyone else had > > this > > > > > diagnosis? > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I have inclusion body myositis is any one in the group with this condition using LDN I have started my treatmeant on 2/4/09. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 > > I have inclusion body myositis is any one in the group with this > condition using LDN I have started my treatmeant on 2/4/09. >============= Someone, may have been one of our LDN doctors who asked about LDN and IBM. I don't know of anyone using LDN for it but would like to know how things are going for you in about 6 months from now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Bren I will update the group and let them know how I feel From: Bren <TwisterAlley2@...>low dose naltrexone Sent: Friday, February 20, 2009 7:26:07 PMSubject: [low dose naltrexone] Re: Inclusion Body Myositis >> I have inclusion body myositis is any one in the group with this > condition using LDN I have started my treatmeant on 2/4/09.>=========== ==Someone, may have been one of our LDN doctors who asked about LDN and IBM. I don't know of anyone using LDN for it but would like to know how things are going for you in about 6 months from now.. Quote Link to comment Share on other sites More sharing options...
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