1. < Osteoporosis & Bone Health

Forteo side effects high calcium decreasing dosage to every other day

Posted by lilmissrph @lilmissrph, Nov 25 11:29am

Hello, I started Forteo 8 months ago, with what appeared to be no side effects. Then, about 6 months in, I started feeling terrible. Extreme fatigue, join pain, brain fog, nausea, just generally feeling very unwell. a month ago, my blood calcium was 10.8 which is considered "moderately elevated." My symptoms continued to worsen. Another blood test of calcium showed still elevated. I stopped taking it for 3 nights, then doc said to take every other night. The first night that I didn't take it I felt SOOO much better the next morning. So I will do the every other night and see what happens. I think the issue is that I am small -- 5'2" and 100 lb. (I lost 5 lb from the nausea and loss of appetite) -- I just can't fathom that I should be on the same dose as a 200lb woman. Are there other lightweights out there who have had a similar issue? Thanks!

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gently | @gently | Nov 29 4:14pm

drsuefowler,
high serum calcium can cause fatigue. 8.5 to 10.2 is considered normal. And may be normal because your kidneys are in fine shape filtering the excess calcium, which could be raising your creatinine levels.
You might experiment with lowering calcium intate and lowering vitamin d intake. I like to follow labs on everything. I wonder if you could lessen the fatigue without sacrificing that good night's sleep.

,

REPLY
1 reply
drsuefowler | @drsuefowler | Nov 30 4:26pm
In reply to @gently "drsuefowler, high serum calcium can cause fatigue. 8.5 to 10.2 is considered normal. And may be..." + (show)
@gently

drsuefowler,
high serum calcium can cause fatigue. 8.5 to 10.2 is considered normal. And may be normal because your kidneys are in fine shape filtering the excess calcium, which could be raising your creatinine levels.
You might experiment with lowering calcium intate and lowering vitamin d intake. I like to follow labs on everything. I wonder if you could lessen the fatigue without sacrificing that good night's sleep.

,

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Thanks @gently. I will try cutting back on calcium @ D to see if it helps. I've only been on Forteo for a week though. Some of the fatigue could be from getting used to the medication.

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gently | @gently | Nov 30 5:01pm

drsue,
cutting back could be the wrong move. My low intake of supplemental calcium could account for my slow bone mineral response to Forteo. Both might be related to my not having any negative side effects.
I hope Forteo will be good for you.

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1 reply
drsuefowler | @drsuefowler | Dec 1 11:07am
In reply to @gently "drsue, cutting back could be the wrong move. My low intake of supplemental calcium could account..." + (show)
@gently

drsue,
cutting back could be the wrong move. My low intake of supplemental calcium could account for my slow bone mineral response to Forteo. Both might be related to my not having any negative side effects.
I hope Forteo will be good for you.

Jump to this post

Thanks @gently. It seems everything we do about Osteoporosis is an experiment. I'll wait until I cut all supplements out before my blood test to see if that helps any. If I remember correctly, you got good results on your spine and no change on hips?

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gently | @gently | Dec 1 12:14pm

drsuefowler,
the changes in bone mineral density were slight after over a year of Forteo. Bone architecture though rose to normal by TBS. Frax risk came down by 1%.
My bone markers were slow to change compared to the numbers in the clinical trials and on this site.
My dietary calcium look great, but only without understanding that dairy calcium absorbability is only about 30%.
One of the physicians I consult with was so disappointed that I eat oranges from the tree, but advised that I take 250 mg before bed, saying that we lose a lot of calcium overnight. I guess it's those osteoclasts.

REPLY
1 reply
drsuefowler | @drsuefowler | Dec 2 10:04am
In reply to @gently "drsuefowler, the changes in bone mineral density were slight after over a year of Forteo. Bone..." + (show)
@gently

drsuefowler,
the changes in bone mineral density were slight after over a year of Forteo. Bone architecture though rose to normal by TBS. Frax risk came down by 1%.
My bone markers were slow to change compared to the numbers in the clinical trials and on this site.
My dietary calcium look great, but only without understanding that dairy calcium absorbability is only about 30%.
One of the physicians I consult with was so disappointed that I eat oranges from the tree, but advised that I take 250 mg before bed, saying that we lose a lot of calcium overnight. I guess it's those osteoclasts.

Jump to this post

@gently, Your TBS is normal so that is good! Apparently, your DEXA was not as good. I'm going to have a second REMS test, since I don't think that the DEXA is accurate in older people. I have arthritis almost everywhere so that must influence DEXA scores. I wonder if it's good to take the calcium supplement before bed if I take my Forteo at bedtime. I'm trying to decide whether to take the calcium at lunch or at night. Thanks for your response.

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gently | @gently | Dec 2 11:19am

If you take calcium citrate breakfast could be a good option. Between lunch or nighttime I'd say lunch. You should find my calcium suggestions suspicious. I always watch the labs, but place priority on how I feel.
I take 250mg with k2-7 two hours before injecting Forteo, even though I suspect that by pulling calcium from the bones forteo and tymlos summon the osctoclasts and osteoblasts. It's starting to make theoretical sense that the anabolics would work best when taken at night with calcium following in the morning.
It does depend on which type of calcium you take, though.

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1 reply
drsuefowler | @drsuefowler | Dec 3 6:29pm
In reply to @gently "If you take calcium citrate breakfast could be a good option. Between lunch or nighttime I'd..." + (show)
@gently

If you take calcium citrate breakfast could be a good option. Between lunch or nighttime I'd say lunch. You should find my calcium suggestions suspicious. I always watch the labs, but place priority on how I feel.
I take 250mg with k2-7 two hours before injecting Forteo, even though I suspect that by pulling calcium from the bones forteo and tymlos summon the osctoclasts and osteoblasts. It's starting to make theoretical sense that the anabolics would work best when taken at night with calcium following in the morning.
It does depend on which type of calcium you take, though.

Jump to this post

I guess I will choose lunch for my calcium. I can't take it in the morning, because I take my thyroid med then. I take Now Red Algae Calcium. Thanks @gently.

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paulinea | @paulinea | Dec 7 1:24pm

Wow such good information. I am on Fortio, one month. Taking calcium, Vitamin D and Magnesium. No direction from my Doc, severe bone loss due to hyperparathyroidism. Had several compression fractures in my spine. I dont know when to take what! Inject daily at night. Fatigue and morning back pain only symptoms. Recent blood test showed very elevated phosphotase levels?? Any comment on that? Seems i am on my own with this as my lovely doc is rather reluctant to offer advise.

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lynn59 | @lynn59 | 4 days ago
In reply to @gently "@lynn59 hi. I've read that it is common protocol in the US to test for hypercalcemia..." + (show)
@gently

@lynn59 hi. I've read that it is common protocol in the US to test for hypercalcemia prior to and at one month because hypercalcemia should be resolved before taking Forteo and can cause hypercalcemia. The thinking is that if the medication doesn't cause hypercalcemia within the first month it is unlikely to over the 18 months of treatment. This testing is not usual in the EU nor in NZ. Mild transcient hypercalcemia is expected with both Forteo and Tymlos.
Does your family doctor order a yearly metabolic panel (CMP). Sometimes an endocrinologist reviews those tests to determine if you need additional testing.
2000 IU of vitamin D is recommended for D deficiency. It may be perfect because Forteo makes good use of D and can deplete the resource, then again it may be a little high. Excess D on it's own can cause hypercalcemia, so I would want D testing. On Forteo 50 ng/mL (125 nmol/L) or close to is best ( I'm told).
The metabolic testing will give indications of the need for further testing through serum calcium and egfr. The endocrinologist I see tests for PTH which your family doctor might add on for you.
I applaud your initiative and your doctor's cooperation.
I'd like to compare my bone markers at six months with yours.
My prescribing endocrinologist doesn't oder the 24 hour urine unless there are metabolic hints about loss of kidney function.
I'd say add d and pth to the metabolic panel. I'm having CTX and P1NP every three months, as I'm close to 2 years on Forteo and want a 3rd year.

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Hi @gently. Thanks so much for your thorough response. My apologizes for taking so long to reply. You must have a medical background! I'll have to look up some of what you mentioned as it is a little over my head:) I was tested for Hypercalcemia before I started taking teriparatide, but not since. It's been seven months since I started taking it. The last time my vitamin D was tested (3 months after I started taking teriparatide), it was right where it should be, which was reassuring. I'm not going to do my CTX and P1NP every 3 months, but I think I'll do it again after one year or 18 months. I intend to stay on teriparatide for the full 2 year course.

I hope you post your results after 2 years. I really hope I make some good gains!

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