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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/20/2007 6:16 PM (GMT -7)   
I was just wondering if you have it and what do you take? My doctor took me off of fosomax because i started having bone chips in my mouth from my jaw. I have to go get an xray for that. Than she took me off of prednisone since that is what is causing my osteo. This is not a good plan. I need something. I'm having lots of muscle pain like I've been lifting weights. I can't put my hands over my head without my shoulder down to my elbows hurting. I imagine it's inflamation from not having the prednisone. either that or my rheumy cut my plaq for 800 to 400. so anyway what do you take? is there another osteo med that works for you and is there another steroid besides pred?
 
thanks
love ya all
carol
God Bless
Carol
 
. Diagnosed Lupus Nov 06. xanax X3,triam high BP, percocet, inhalers,COPD. oxygen Plaquanil400mil, Pred. as needed. effexor.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/20/2007 6:32 PM (GMT -7)   
Hi Carol,
  Wow..it sounds like your having a rough time without the pred and it has caused you alot of problems....((Hugs)).
  I have taken Actonnel in the past for Osteo, but now take fosomax.
  I hope your doctor can do something soon to help you with this problem. I'm sorry your having so many problems. I have seen other names for steriod meds like methopredinsolone or something like that and another one I can't remember right now. I'm sure the others will be along soon to help you out more. Hang in there and keep us updated. You are in my prayers.
                                                                  Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/20/2007 6:48 PM (GMT -7)   
Thanks Bab's, I'm not in terrible pain or anything. It's just enough to be able to tell that I need to be on steroids. As much as I really don't want to be. It's better than this. At least my cough is gone! I have a rheumy appt thursday I will ask him. I have a years supply of fosamax setting here because the v.a. sends them to me all the time. They'll probably put me on something I actually have to pay for! I'm really not felling to bad, much better than I was. It's amazing what those little steroids can do for ya. Too bad the side effects are so rough.

Thanks Bab's and be carful with the fosamax, If you start having jaw pain.

love ya
carol
God Bless
Carol
 
. Diagnosed Lupus Nov 06. xanax X3,triam high BP, percocet, inhalers,COPD. oxygen Plaquanil400mil, Pred. as needed. effexor.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/20/2007 6:53 PM (GMT -7)   

Carol,

  I'm glad your cough is better. Thats a start..now they have a few other things to get better for you.

  I have only been on the fosomax about 2 months. How long did you take it? It's great that he V.A. helps with your meds. I hope your appt goes well on thursday.

  I know what you mean about the pred helping you feel better but the side effects are awful sometimes.

                                                             ((Hugs)) Babs


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/20/2007 7:03 PM (GMT -7)   
I was on it for about 2 years. Than about 3 months ago I thought I had a dental problem. I thought I felt my jaw bone sticking through the side of my mouth. after about a month it was a chunk of bone that splintered off. The doctor loked in my mouth and immediately took me off the fossomax and told me to go get a xray. That was when I was heading for phoenix and havn't done it. I know i know bad. anyway fosomax is being sued for this by several people. If you want to know more you can serch under fossomax and dead jaw syndrome. look for photo's It's awful. I'll never touch it again. It usually happens to be people that have an underlying illness that's why it's still on the market not everyone gets it.

hugs
carol
God Bless
Carol
 
. Diagnosed Lupus Nov 06. xanax X3,triam high BP, percocet, inhalers,COPD. oxygen Plaquanil400mil, Pred. as needed. effexor.


mybodyhatesme
Regular Member


Date Joined May 2006
Total Posts : 149
   Posted 3/21/2007 6:25 PM (GMT -7)   
i have bone loss, but just this week it was determined to be from my immune system eating the bones up not prednisone. oy. has your dr looked into it being your immune system eating it up and not the meds? i'm not really sure how they go about this but.....

i am making sure that i get about half of my calcium from a supplement and the rest from food -- because that is the best way for your body to get anything. my back aches so the last thing i want to do is lift anything, but i am trying to do it a little each day. something is better than nothing i guess. when i see a 2nd rheumatologist sometime soon, i'm going to ask about medication, i'm really worried that being 25, things could be REALLY bad by the time i'm 50!!

jessica
lupus or something like it
jessica
25 years old
UC since 8/05 Remission & Med Free since 8/06
Raynaud's 2/07
Eczema 2/07
Migraines since summer of 2003
 
 


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/23/2007 11:56 PM (GMT -7)   
i was taking fosamax for about a month when my doc decided it was not crucial that i was on it, i was having lots of gi problems with it. i had a dexa scan done last year and it doesn't show osteoperosis but osteopenia which apparently can turn into osteoperosis if left untreated so right now i am talking calcium supplements 500mg twice a day, and i will probably have another dexa scan done in a few years. and all this was cuaused but the prednisone which have also destroyed both my knees. i am only 25 yrs old, i have to wait for as long as possible to get knee replacement surgery which is the only thing left that they can do for my knees, which sucks, but it's not like i have much of a choice. oh and for the fosamax i didnt like taking that stuff even though it was only once a week, it made my stomach feel all weird
Hugs and prayers,
Suzanne
 
diagnosed in May '95 with lupus, nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06
prednisone, allopurinol, synthroid, cellcept, prograf, lopressor

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