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Thread: Forteo experience and side effects?

  1. #1
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    182

    Forteo experience and side effects?

    Just wondering if anyone who's taken Forteo has had any strange side effects? I started fire for a brief period before my surgery last November, and then have been injecting it steadily since mid Nov, so roughly 10 weeks or so. For the past month I've had just a general ill feeling. Headaches, I've also been short of breath, dizzy at times, almost like my blood pressure is rapidly fluctuating when I get up from sitting, and even when I'm just bending over a little and then stand up straight. I've had what feels like acid reflux, which I've NEVER had an issue with, but no antacid helps. My throat feels like it's constantly swollen, to the point where it's difficult to swallow at times. I've been attributing all this to the other meds I'm on, but I'm not so sure. I was looking at possible side effects to Forteo, and these match up. I also found some user reviews, and several people have reported the same.

    I contacted the endocrinologist this morning, and it seemed she was almost making excuses for why it wouldn't be due to the Forteo. I thought that was odd. She made good points that I'm not that far out from surgery, and my immune system could just be way out of whack still. She suggested I get a chest xray, to check for walking pneumonia, or any other respiratory infection. I doubt that's the problem, because I've gone through a prescription of amoxicillin, AND a Z-pack since just before the new year, and the symptoms are still here. I'll be seeing my gp next week, and I'm not going to take the Forteo until at least after that to see what happens.

    Have you experienced anything like this when you were taking Forteo?
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  2. #2
    Join Date
    May 2016
    Posts
    45

    2 years of Forteo this month

    Hi Mike, March 8 will be 2 years of Forteo for me. I've never had any side effects. It is worrying when you experience vertigo on standing up. Worse happened to me when I was dehydrated. My experience was full syncope- fancy way of saying I passed out. No warning, I just stood up and regained consciousness staring at the ceiling. I am no expert, but a trip to your GP for a complete blood chemistry panel and ECG would not hurt. In the meantime why not try increasing your fluid intake? It certainly can't hurt anything. Medical advice varies on the amount of water you should drink a day, for a time it was (8) 8 ounce glasses per day. That is a bit tough even in the dog days of August. I drink a full liter of spring water every day, more in the Summer. After 2 years I am bruised a bit around my favorite injection site, but that is it. If you can at all, please stay on the Forteo as it is the best drug available for building bone mineral density. If you are paying for Forteo, Lilly has a pro bono program I can tell you about if you like. Chet

  3. #3
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    182
    I must have a pretty good insurance policy, I haven't paid more than $4 for it. I've read that people have had to pay up to around $3000 a month for it. I know it's supposedly the best, but I just think there's too many unknowns about it still. The fact that you can only take it for a total of two years throughout your entire life, and that it's known to cause cancer in lab rats... A little scary. I'm stopping it for at least five days, I need to know if I can exclude this from the cause of the side effects.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,757
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
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    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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  5. #5
    Join Date
    May 2016
    Posts
    45

    Side efx

    Mike, The only time I've experienced a major side efx from a med it was within 24 hours. Avoid my mistake of changing more than one thing at a time in attempting to feel better; once you stop the Forteo then change nothing else in your routine. If your symptoms abate in a few days, then you had a delayed reaction. I'm hoping this is not the case, because the other biologics are not as good as Forteo. Fosamax will likely be my next drug, my rhuematologist explained it will help retain the BMD gains I made on Forteo, but not increase the BMD much, if any, further. You should know by Monday... C

  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,499
    Hi Mike, I have been on Forteo for almost 2 years and do not have any side effects. I do my inj at night right before bed, so to minimize side effects.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  7. #7
    Join Date
    May 2016
    Posts
    45

    Possible link to GERD?

    Hey All, Mike shared he was diagnosed with acid reflux a few days ago. After a year on Forteo I underwent a routine esophageal scope, part of a clinical trial I was enrolled in. I had no symptoms expect a very occasional occurence of acid reflux. The scope pictures came back drastically changed from a year previous, I had white nodules around 60% of the esophageal opening. The most likely reason given was acid reflux (GERD), and not the trial med I was on. I began famotidine tx. The only thing that changed between the two scopes was a year of Forteo. I'm not saying there is a link, what I can say is I never had nodules prior to Forteo. Mike was experiencing a lot of symptoms, whereas I did not. FYI, two cases does not a side effect make... RJM

  8. #8
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,467
    I started using baking soda for stomach acids. 1/2 teaspoon in 8 oz water. Works great for killing the acids....This happens only if I eat wrong.I got tired of buying Zantac. ( Is that cheap or what?) $2 million dollar spine, and a fraction of a penny for heartburn control. (smiley face)

    I had a lot of heartburn and acid reflux after my surgeries. I also was choking at night, and eventually had an ER doc go down my throat and look at my epiglottis, which was fine.

    Since I am medication free, my acid problems are due to eating wrong.

    I had the on and off dizzies after my surgeries for probably a year being med free....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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