My Experience On Forteo
I completed a course of Forteo last year.
Forteo is a medication that is a hormone which builds up spine bone density.
I am obsessed with taking care of my bones.
I have been getting DEXAs since I was first diagnosed with Ehlers-Danlos Syndrome, about 16 years ago. A DEXA is the machine that attempts to measure bone quantity.
Complications of Ehlers-Danlos Syndrome:
Early Onset Osteoarthritis (joint damage)
Early Onset Osteoporosis (fragile bones)
Did you know?
Things I didn’t know.
The DEXA should be done on the SAME machine and SAME body parts every year because it is not very accurate, so a relative change is the best indicator of what is going on.
I did not know this, so my first years of DEXAs were not very useful. I was getting them done on different machines, with different body parts ordered, even though I was seeing an alleged bone density specialist. Oh well. This lady was also ordering thousands of dollars of tests every year, including a 24 hour urine collection (isn’t that fun!) and had no idea how to interpret any of it. Sometimes a doctor can be a hot mess. She was an orthopedist. Endocrinologists are the bone density guys, not orthopedists. That was a lot of wasted time and money.
Now I go to Cedars-Sinai for my DEXA every year. The fabulous machine itself lines up the scan against my last year’s images, so we know for sure if they are getting better or worse. How objectively strong they are is a mystery.
Get your wrists DEXA’d, too.
My endocrinologist also orders my forearms scanned, which I recommend. Check to see if your insurance will cover. An endocrinologist is the specialist who usually prescribes the bone drugs.
Wrists often take impact during a fall. If they are weak they may break. No fun!
I throw my 8 pound ball in the air and catch it so it slams into my hands and builds up my bone strenghth. If your wrists are weak, don’t start off doing this because you could break a bone.
I also do lots of resistance exercises with my hands. You can buy toys like this on Amazon. They are great. I have others, too. I have had physical therapy specifically for my wrists and it was f*cking awesome. I do wrist exercises with small dumbbells. Do take the time to learn.
How weak were my bones?
I am not sure how low my spine bone density ever was, as EDSers just look exceptionally bad on the DEXA. Something about our thin bones and strange collagen, I guess.
My spine was always the lowest of all areas scanned.
However, on my spine X-rays and spine MRI, there were no fractures and no osteopenia or osteoporosis. So that was good news. But that doesn’t mean the bones were strong. It’s just better than seeing obvious weakness or breaks.
I have heard presentations on bone density at Ehlers-Danlos Learning Conferences. It was said that EDSers might look bad on the DEXA but not fracture easily, that the DEXA is not very accurate for us. Unfortunately, none who spoke gave any treatment recommendations for bone density for EDSers. So I will tell you more about mine here. Keep reading.
The best definition of osteoporosis is fracturing without trauma, so if that is happening to you, get help! If you are young, I promise, no doctor will know how to advise you. Find an endocrinologist.
The research DEXA is not out yet.
A couple of years ago, I was able to get on the research DEXA — the machine that will eventually replace the current one. I paid cash for my ride.
This new machine measures bone quality versus bone quantity. That should be a more reliable indicator of fracture risk. I look low normal to normal on the research DEXA. Phew!
I had a significant improvement in my spine bone density from Forteo.
A few years ago, my endocrinologist thought Forteo was the right thing to do. I trusted him. I went on it.
It did work. Yay!! I had a robust improvements in my spine, per the regular DEXA. I was very pleased.
I did about 30 months of injections. I was able to get my hands on a few extra pens.
Forteo is limited to 24 months due to safety concerns. It sometimes caused cancer in rats. This does not seem to be happening in humans. One doctor on my team has had a patient on Forteo for ten years. She’s doing well. She’s still on it because she refused other bone supportive drugs. She pays $1,000 a month for it on her own.
Forteo is a nice drug, easy to tolerate and agreeable. I would go on it again if that made sense. I think the patent expires right about now, so the cost should come down a lot.
I took six months off during the course of treatment, as my endocrinologist learned from a Forteo researcher, that makes it more effective.
I also exercised and moved a ton.
Want better bones?
Bones respond to force. Without enough force, they get weak. So . . .
Lift, lift, lift! I mean weights!
And . . .
Jump, jump, jump!
Build up your bones while you are young!
You can hop 50 times on each foot every day.
Sometimes if I feel I haven’t moved enough during the day, I stomp as I brush my teeth.
I take walks with my 15 lb weighted vest and ankle weights. Since that is not enough, I carry small dumbbells, and do reps as I walk, too.
This is also a great way to build core stability.
I did — and continue to do — tons of kettlebell swings and kettlebell overhead presses. This really loads up my spine. Get those muscle fibers tugging on the bone which stimulates bone repair!
I also strap on ankle weights (I’m up to 8 lbs on each leg now) and do leg lifts in every direction nearly every day. I do this lying down. Fast and effective! I watch movies during. It’s my me time. This loads your hip joints and low back intensely. And gives you toned, sexy legs that will carry you up and down hills and stairs like a champ.
Be sure to correct your spine posture before adding lots of weight. I might as well mention the best guide for that. This book (above) is the basis of how I move in exercise and life. If you have slumpy posture and you add weights you might do some damage. Best to take time to learn first.
After Forteo, you need a drug to preserve your gains.
Back to Forteo, my endocrinologist wanted me to go on Prolia when my course was completed. That was always his plan.
After Forteo, your bones need medication support to hold onto the improvements.
I read about Prolia and disagreed with his recommendation.
Prolia, no thanks. At least, not now.
I’m too young for Prolia. I do not have osteoporosis (even on the current DEXA) which Prolia treats. If necessary, I would consider going on it when I am much older and won’t have years of life to live with the wacky side-effects. And they are wacky!
Testosterone for bone health.
So I parted ways with my beloved endorcinologist. I ran around town paying for advice. After listening to a lot of dumb suggestions, I ended up going on testosterone for bone preservation after Forteo. I love it!
My testosterone blood levels are in normal range. That is not what we are treating. We want to build up or at least help me hang onto my bones.
You can search the Pub Med and see studies on females, testosterone, and bone density.
Here is one: Testosterone for … Osteoporosis?
I wish I had gone on testosterone years ago!
Actually I did try small injections of testosterone with Dr. Plance before I was only daily shots of C. It was not a hit.
Now, with such healthy and strong (although not normal) collagen, testosterone is a nice addition to my program. It gives me a boost in well-being, plus I build muscle faster. Yee-haw!!
I inject 10 or 15 mg every week, at least for now. It’s hard to draw such a tiny shot. Maybe I will try more in the coming months. I always start slow and low with new meds. My doctor said women get better results from testosterone injections versus cream and have fewer side-effects. He has decades of experience in giving women testosterone for various reasons.
Microzide (hydrocholorthiazide) for bone health.
While I was on Forteo, I also added Microzide (hydrochlorothiazide). This may have helped quite a bit. This is a blood pressure medication that keeps calcium in your bones. Note that many blood pressure meds cause depression. This one does not.
See this paper: Low-dose hydrochlorothiazide and preservation of bone mineral density in older adults. There are other papers, too.
I can only manage one 12.5 pill per day. It makes me too dehydrated. It is a water pill, slightly problematic for someone prone to POTS and electrolyte imbalances. I make it work.
I take it first thing in the morning. I make sure I drink plenty of water, mixed with salt and a little potassium, and I do fine. You will pee a lot after you take it, so plan ahead. Not the time for a long freeway commute.
It took many months to get used to Microzide. I tried taking a whole pill. I got heat rashes. It made my restless leg syndrome flare up, probably due to electrolyte deficits. So I was not sleeping well. Yuck. I felt awful.
I started dissolving it and taking ¼ of a pill that way. Do check with your pharmacist before altering your medications, as this may not work for all meds. Eventually, over time, I became able to tolerate a whole pill with ease! Don’t give up on treatments too quick if you have EDS. We are so sensitive and don’t feel well. Try to outsmart your side-effects and get the benefit a good drug can offer.
Microzide will also prevent kidney stones. I am at risk for one because I inject so much Vitamin C. I haven’t gotten one and hopefully won’t.
Okay, I hope this helps someone out there.
We spend a lot of time in the EDS world trying to get patients symptom relief.
But do take the time to care for your skeleton.
Who wants a hip fracture?
Or any fracture?
Ouch and no fun!
Here is a YouTube I made about Forteo. Enjoy!