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Forteo experiences?

Posted , 4 users are following.

celaine_30095
celaine_30095

Hey friends – I have osteoporosis and I am experiencing some spinal problems, heading for a spinal fusion and laminectomy surgery June 26. Took Fosamax for years without much success, or increase in BMD. Have had many hip replacement surgeries followed by slow bone growth and difficulty healing. Spinal surgeon sent me to bone specialist and and wants me on Forteo immediately! Started it last week and am noticing some side effects already.

Headache and brain fog/dizziness, nausea etc.

What have been some of your experiences? Do these effects settle in and go away over time?

How have you dealt with side effects??

1 like, 6 replies

6 Replies

  • BoneAmi
    BoneAmi celaine_30095

    Posted

    I am currently on Forteo (22nd pen) and have side-effects that I was hoping would resolve after being on it for awhile, but alas, never happened. I decided early on to inject before going to bed to try and avoid the nasty feelings I experience-nausea, elevated heart rate and a general feeling of unwellness. I avoid those for the most part unless I am awake or awaken after the injection. I've noticed these side-effects last for about 4 hours after the injection. Other side-effects that I believe are from the Forteo are more hair loss than normal, rash on my stomach, elevated cholesterol and a bout of the shingles not long after starting the injections. I will be glad to be done with this, but then not ready to start another one, which I'm hearing others' doctors have recommended. Aaaargh!

    • Anhaga
      Anhaga BoneAmi

      Posted

      I expect the doctors have another med lined up for you because you shouldn't take forteo for more than two years.  Time to start eating more kale and broccoli!  And foods containing Vitamin K2 (brie, gouda, etc).  Are there any contraindications for supplements when on forteo?

    • celaine_30095
      celaine_30095 Anhaga

      Posted

      I've just started Forteo BTW. Must have misunderstood my post!!

      And I already eat my bodyweight in leafy greens every day LOL

    • Anhaga
      Anhaga celaine_30095

      Posted

      I understood your post to say you had been on fosamax for years and the docs had another med lined up for you - didn't realize you had already started the other med.  Good Luck.

       

  • Susanooo2
    Susanooo2 celaine_30095

    Posted

    I am 65 year old female and started taking Forteo at age 63 do to a low bone density and family history of osteoporosis. I had very painful side effects in most of my joints and muscles. I stopped taking it after 3 months and the pain went away after several more months. Two years down the road, and not on any medications, the same pains have returned and have persisted for the last 5 months. The pain is especially bad once I lay down at night. Today I can not lift my arm over my shoulder, my thumb is so painful I can not write a grocery list and, after hiking 5,000 foot mountains just 6 months ago, I need assistance to get in or out of bed.

    I have tested negative for bone cancer and Lyme disease. Rheumatoid arthritis has been ruled out but without conclusive testing.

    Has anyone had the side effects return? Did something trigger them? Have they gone away and how long did they last?

    Thank you!

    PS I was very active walking, hiking, kayaking and biking ...and took the injections as preventative measure due to family history.

    • Anhaga
      Anhaga Susanooo2

      Posted

      Possibly it isn't a residual effect of the forteo at all.  Your symptoms may be something called polymyalgia rheumatica.  Is the pain bilateral, and does the stiffness ease up a bit after you start moving, but return if you are still for a while?  Before I was diagnosed I found getting out of bed required planning, and getting into and out of a bathtub was a real adventure.  Some people with PMR before treatment do need assistance for actions like this.  I thought I would have to give up driving as I couldn't reliably turn my body enough to shoulder check. 

      https://patient.info/health/polymyalgia-rheumatica-leaflet

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