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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@lilmissrph,
thank you for this valuable post.
I have 1 inch and 3lbs over you and haven't had any problems with Forteo, but I may not be taking enough calcium to get the most benefit from the drug. I suffer from those unproven reports that supplemental calcium calcifies cardiac arteries.
I agree that we can't all need the same dose of medication. The information in your post from symptom to resolution is significant for all of us.

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I just started Forteo after a year of half a dose of Tymlos. I was told to stop calcium before my next blood test. I wonder then if the results will be accurate, since I do take 250 mcg of calcium and 2000 IU of vitamin D. I am also a light weight. I am having much fewer side effects with Forteo than with 50 mcg of Tymlos.

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drsuefowler, calcium supplementation doesn't ususally affect serum level because your body borrows from the bone to keep it constant. Forteo or Tymlos can elevate calcium levels because your body controls calcium through parathyroid hormone. Generally either drug will elevate calcium levels transciently during the 16 to 24 hours after injection. You may want to time your serum draw before the injection. Elevated calcium levels with normal pth suggests primary hyperparathyroidism.
Excess calcium in the blood can depress kidney function. And reduced kidney function can increase serum calcium
Excess Vitamin D can cause excess calcium buildup in the blood. 800 IU would be a normal dose for you. You may want to lessen the dose or stop your dose before the same calcium test.
250 (I'm assuming) mg would be low dose calcium, same as mine.
I do hope Forteo works out for you. It's my favorite.

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@gently

drsuefowler, calcium supplementation doesn't ususally affect serum level because your body borrows from the bone to keep it constant. Forteo or Tymlos can elevate calcium levels because your body controls calcium through parathyroid hormone. Generally either drug will elevate calcium levels transciently during the 16 to 24 hours after injection. You may want to time your serum draw before the injection. Elevated calcium levels with normal pth suggests primary hyperparathyroidism.
Excess calcium in the blood can depress kidney function. And reduced kidney function can increase serum calcium
Excess Vitamin D can cause excess calcium buildup in the blood. 800 IU would be a normal dose for you. You may want to lessen the dose or stop your dose before the same calcium test.
250 (I'm assuming) mg would be low dose calcium, same as mine.
I do hope Forteo works out for you. It's my favorite.

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Hi gently. I’m on Forteo and take 1200 mg of calcium daily through a combination of food and supplements, plus 2000 IU of vitamin D and k2. Do you think I should have my calcium levels tested now that I am 6 months into using teraparatide? Or other blood levels? My endocrinologist didn’t request any post drug testing. I took the initiative and had my family doctor ask for a CTX and P1NP which all looked good (the drug is working), but I haven’t repeated a 24 hour calcium urine test or anything else since taking the drug.

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@gently

drsuefowler, calcium supplementation doesn't ususally affect serum level because your body borrows from the bone to keep it constant. Forteo or Tymlos can elevate calcium levels because your body controls calcium through parathyroid hormone. Generally either drug will elevate calcium levels transciently during the 16 to 24 hours after injection. You may want to time your serum draw before the injection. Elevated calcium levels with normal pth suggests primary hyperparathyroidism.
Excess calcium in the blood can depress kidney function. And reduced kidney function can increase serum calcium
Excess Vitamin D can cause excess calcium buildup in the blood. 800 IU would be a normal dose for you. You may want to lessen the dose or stop your dose before the same calcium test.
250 (I'm assuming) mg would be low dose calcium, same as mine.
I do hope Forteo works out for you. It's my favorite.

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This is very interesting and helpful @gently. Timing the blood draw before the injection is a good idea. I take my Forteo at night before bed and will get the blood draw at 8:00 AM. Do you think it is alright to just skip the shot the night before?

My last blood test showed stage 2 Kidney failure. I never had this before. My docs just say that this is normal for my age. I have too much calcium in my urine, and my serum level was at 10 four months ago. You describe an interesting relationship between the kidneys and serum calcium.

Is it recommended to stop all supplements before a blood test? I can't seem to get a straight answer from my docs about this. I was told to stop calcium, and I see on this forum that I should stop collagen and biotin for CTX.

It sounds like I could cut back on Vitamin D. I take Magnesium. I am also taking Vitamin K2 MK7 and Boron to help the bones absorb calcium. I wonder if I am taking too many supplements.

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@lynn59

Hi gently. I’m on Forteo and take 1200 mg of calcium daily through a combination of food and supplements, plus 2000 IU of vitamin D and k2. Do you think I should have my calcium levels tested now that I am 6 months into using teraparatide? Or other blood levels? My endocrinologist didn’t request any post drug testing. I took the initiative and had my family doctor ask for a CTX and P1NP which all looked good (the drug is working), but I haven’t repeated a 24 hour calcium urine test or anything else since taking the drug.

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@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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Do you take supplements Vit D and calcium also?

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Wow do you take supplements? I take 500 of calcium and 3000 iu vitamin d3

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@drsuefowler

This is very interesting and helpful @gently. Timing the blood draw before the injection is a good idea. I take my Forteo at night before bed and will get the blood draw at 8:00 AM. Do you think it is alright to just skip the shot the night before?

My last blood test showed stage 2 Kidney failure. I never had this before. My docs just say that this is normal for my age. I have too much calcium in my urine, and my serum level was at 10 four months ago. You describe an interesting relationship between the kidneys and serum calcium.

Is it recommended to stop all supplements before a blood test? I can't seem to get a straight answer from my docs about this. I was told to stop calcium, and I see on this forum that I should stop collagen and biotin for CTX.

It sounds like I could cut back on Vitamin D. I take Magnesium. I am also taking Vitamin K2 MK7 and Boron to help the bones absorb calcium. I wonder if I am taking too many supplements.

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drsuefowler,
I'd skip the night before injection. And I'd skip supplements the day before, mainly boron, d and calcium and any protein supplements.
Stage 2 kidney disease may be common in age. Under that rubric we can use the term normal.
Serum gfr is an estimated rate influenced by high protein intake, muscle building exercise, muscle loss and damage to muscles-- factors that aren't an indication of the loss of kidney function. Serum calcium and calcium in the urine can be affected by calcium and d intake.
Forteo increases urine calcium.
Precise ways of directly measuring GFR exist but are inconvenient and seldom employed.
I wonder too about all these supplements. I even take phosphatidylserine, but I laugh a little at myself.
I do get serum d levels twice a year and adjust intake accordingly. 20–50 ng/mL (50–125 nmol/L) I aim for 70nmol/L.
I'll be curious if you still register the estimated stage 2.

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@gently

drsuefowler,
I'd skip the night before injection. And I'd skip supplements the day before, mainly boron, d and calcium and any protein supplements.
Stage 2 kidney disease may be common in age. Under that rubric we can use the term normal.
Serum gfr is an estimated rate influenced by high protein intake, muscle building exercise, muscle loss and damage to muscles-- factors that aren't an indication of the loss of kidney function. Serum calcium and calcium in the urine can be affected by calcium and d intake.
Forteo increases urine calcium.
Precise ways of directly measuring GFR exist but are inconvenient and seldom employed.
I wonder too about all these supplements. I even take phosphatidylserine, but I laugh a little at myself.
I do get serum d levels twice a year and adjust intake accordingly. 20–50 ng/mL (50–125 nmol/L) I aim for 70nmol/L.
I'll be curious if you still register the estimated stage 2.

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Thanks @gently. I am glad to learn that serum gfr is influenced by other factors that are not necessarily an indication of kidney function. I now plan to stop all supplements 2 days before my blood draw and will skip my Forteo the night before. So far, my only side effect from Forteo is all day fatigue. I'm sure I am sleeping through the rest, and I am sleeping better on it than I did on Tymlos.

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