Reclast, Vit D and Forteo

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peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/3/2007 1:16 PM (GMT -7)   
I am new to this topic - I have read quite a few threads but haven't found the answers to my questions, so I thought I'd just ask here.
 
I had osteoporosis, I believe it was initially caused by all of the steroids at a very young age when Crohn's Disease was diagnosed many years ago.  I had a perm. ileostomy in 1984, hysterectomy in 1986.  I have had some bone/joint issues in the past.
 
Here's where I am at now.  I finished the 2 yr Forteo inj. therapy prgm early in 2005 with EXCELLENT results.  DEXA showed near normal bone density at end of shots.  Then thru bloodwork, it was found that I was deficient in Vit D.  Tried 3 months of OTC supplements - no change, tried 3 months of sun therapy - no change.  Currently on RX - 50,000 IU once a week & will retest 2 more months.  The RX dose has been making me a little nauseous too the day after the dose.  Calcium levels, parathyroid are fine.  Just absorption issues with D.
 
Meanwhile, endocrinologist wanted me to do the Reclast infusion.  Which I just did yesterday.  Has anyone had this new drug?  Any side effects from it for you?  I felt pretty nauseous last night and just wiped out today.  
 
Any comments, hints, suggestions would be greatly appreciated. 
Thanks in advance for all your insight.
 
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/3/2007 3:53 PM (GMT -7)   
I'm still on the sofa, just feel like a wet noodle today. And I've had a horrible case of gas today. I'm certain it is not from anything I have eaten. Any ideas??
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 11/3/2007 4:19 PM (GMT -7)   
hang in there peggy, sont know if that is from that med? hope you feel better soon.....

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/3/2007 6:39 PM (GMT -7)   
Thanks Yalinda. I was hoping I would find someone that has had this IV drug already and could tell me if they had any side effects? ... The info on it certainly indicates it is a good possibility; but I always like to hear from a real person too!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/4/2007 6:05 PM (GMT -7)   
Well, I know that my B12 levels are fine -- I give myself 1 cc every 2 weeks IM -- labs indicate levels are good. I am also on Nexium, like you, and have been for years, even tho I have been successful in getting my gastric ulcer healed.. I also am on HRT, and have been since 1986 when I had my hysterectomy.

I am feeling some better today --- still have more gas than I can remember having for a long time. I have taken a couple of naps today --- still feeling like a wet noodle, but better than yesterday. Nausea has dissipated some too.

Thanks for the post... good hearing from you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Fluffytwo
Regular Member


Date Joined Sep 2006
Total Posts : 100
   Posted 3/2/2008 7:29 PM (GMT -7)   
Reclast to Peggy,
 
My rheumy wants me to take reclast but had bad reaction to Fosamax. I'm afraid if the Reclast lasts a year that the side effects might too.
 
What are your reactions by now, what do you think. I am in lots of pain and on 12 mg prednisone down from 15  started in Aug. 2007. Down 1 mg. a month. My vitiamin D was severely depleted. Been on prescription Vit. D. Go to rheumy on Mar 17 for my monthly appt. She ran another D blood tests. Do not know yet the results.
 
Hope your meds are helping.  yeah
 
Love, Fluffytwo

Kikie
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/18/2008 2:00 PM (GMT -7)   
eyes  Reclast.......had Reclast IV about 1 week ago, had flu like symptoms the next day, took Tylenol which helped.  Have had occ minor headache, again Tylenol. But exercising, eating ok, feeling tired at times.  Guess I should take a nap!!
Kikie

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 3/19/2008 2:47 AM (GMT -7)   
 
     Peggy: I received the reclast about 3 months ago. Only had mild flu like symptoms for about 4 days. Then I was fine. I never knew I had osteoperosis . Till I was told I shoud get the infusion. Since I am so tired of taking pills I decided on the one year. I don't know how your supposed to feel after. They also put me on 1700 mg. calcium,and 800mg Vitamin D. Don't know when they will check to see if there have been any changes. I also have degenerative arthritis of the lower back and no cartliage on my knees. Bad feet . Also another arthritis I can't remember name of. Can't take any type of pain meds. because of another problem I have. So I am truly in pain 24-7.  Hope the reclast works . I did quite alot of research prior to getting it and the only mention to side effects was flu like symptoms.     So I'm sure you'll be fine.   june smurf

sunstateshirley
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/16/2008 5:46 AM (GMT -7)   
My 97 year old mother is going to have her second RECLAST IV. She had her first last October and had no apparent side effects.
 
I will let you know how she does this year (2008).
 
I would like to ask if anyone how gets the RECLAST infusion if their doctor ever told you that getting an annual flu shot was out of the question?
 
 Last year she had both with no problem.
 
This year she has a new primary care physician (same group of doctors that she has always had, so all her medical records are on file) and said he would not recommend getting a flu shot. She has no kidney or liver problems that I know of, so I can't understand this new approach.
 
When I posed this question to  the RECLAST website, they simply  say "Ask your Doctor."
 
I will follow his advice but I question his decision. His nurse just says bluntly "he does not want her to get it."
 
Every day she attends an adult day care where colds and flu are common and frequently disable staff and clients. This does not give her any protection, and concerns me.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/20/2008 9:10 PM (GMT -7)   
Can you talk to the doctor directly to ask him why and not his nurse? Does he realize that she's had it before while on the reclast?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


sunstateshirley
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/21/2008 7:22 AM (GMT -7)   
I actually asked her new doctor during her appointment if it would be OK for her to get her usual flu shot and if there was any conflict with RECLAST and to the new SHINGLES immunization shot. At that time he said no to both. He gave no reason and no explanation. I then thought that I would ask the RECLAST manufacturer directly. They are the ones that said to ask her doctor. So I again called and asked his nurse, who called me back and said he doesn't want her to have it, even though I had asked for an explanation as to his decision. Today she is going for her annual RECLAST infusion, I am going to ask them. Also I will ask if her bloodwork gives any indication of his decision. I really hate for her to not get her flu shot. When I relayed my fears to the nurse, she said I could bring it up again with the doctor at her follow up appointment on the 22nd of December. (unfortunately the flu season has already begun in my area)

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/21/2008 2:44 PM (GMT -7)   
Did you talk to them today? What did they say?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


sunstateshirley
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/24/2008 1:33 PM (GMT -7)   
I got a call back form my mother's primary care doctor. I asked him the reason he did not want her to get a flu shot this year. He said because RECLAST would compromise her immune system. When I told him that the doctor at the facility who administers the RECLAST infusion said she not only could but SHOULD receive her flu shot, and that he would give them both to her on the same day, her primary care physiician said he would then bow to his expertise. Today we went and had BOTH done.

rnbsn
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/24/2008 8:34 PM (GMT -7)   
I had my first Reclast infusion 57 hours ago. The day following the infusion, I had a lot of gas that had a medicinal odor. about 30 hours after the infusion I started deep muscle/bone aching and fatigue, like the flu. I am still experiencing fatigue and deep muscle/bone aching. I hope the aching does not last 7-14 days like the literature suggests! Tylenol helped me to get through the work day.

mary doe
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/13/2009 6:47 PM (GMT -7)   
My mother is 65 y/o and had reclast last March and has been very ill since about July. She started with generalized weakness and joint and bone pain. She did have the jaw pain for a while. The most bizarre symptoms have been facial swelling. She has seen numerous doctors and was at the Mayo Clinic for 2 weeks with no answers. Of course, nobody will admit that it is from a drug. She had to take a leave from her job and continues with pain, weakness, fatique, and swelling despite being on 4 antihistamines. If anyone has any info, please reply. She would really like to actually talk to someone with similar side effects. We are just hoping that in March, the med will be out of her system. This is a horrible drug that should never have been put on the market.
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