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RECLAST SIDE EFFECTS

hutspa
  • By hutspa
  • Posted June 27, 2008 at 11:26 pm · 21 replies
  • In Help desk
  • Shared with the public
0 Recommendations

hello...my mom has osteoporosis and is a five year survivor of breast cancer...she had to stop taking boniva due to side effects and had her 1st reclast shot in november....over the past 6 months she has had increased fatigue, muscle aches & pains (neck back leg groin) and we are trying 2 figure out if its due to reclast...also she has had a high blood calcium level (hpercalcemia)..noticed that hypo is associated with reclast just wondering about hyper,,,,but her parathyroid levels are normal...
how long can residual side effects of reclast last or onset....thank you

Explore topics in this discussion:

Cancer Surgery Aromasin Ovarian cancer Osteopenia Osteoporosis Evista Ovarian cysts Dehydration Heart disease Boniva Forteo Confusion Stroke Fosamax Breast cancer Reclast Hyperparathyroidism Constipation Pain Heart attack

21 replies

Toot

Hi hutspa,

The effects can last as long as a yr or more. Reclast does not leave the system very fast. In fact my gyno advised me not to take it for that reason. He asid if you get side effects from it , your stuck. Joint pain is defintly a side effect od reclast. You shoudl let the Dr. know. I heard that reclast also has an isotop in it. She has all the side effects of reclast from what your describing. Good luck and I suggest you read all the posts on this site , they are very imformative. Good Luck and best to you and your mom

Toot

http://www.doctorsaredangerous.com/The_Delusion_of_Bone_Drugs.htm



Go to that side hutspa. It was psoted by someone earlier.

windblown

Hi hutspa: Sorry about your mom's side effects.

Does she have *hypercalcemia* (high cal) or *hypocalcemia* (low cal)? Bisphosphonates like Reclast, Fosamax, Boniva etc usually cause your calcium level to go down, not up. Do you know what her cal level is (score) and if it was a serum total cal test or a serum ionized cal test? It might be a good idea to let her oncologist know about the hypercalcemia if that is what she has, I'm a bit confused since you mentioned both hypo and hypercalcemia.


I have hypercalcemia, and am trying to find out what is causing it since I'm not taking any med that would effect it. If your mom has high cal while taking Reclast that is unusual and I would have a Endo and Oncologist look into the reason for this. Also how's her vitamin 1,25 (OH) D and 25 (OH) D?


Good luck and I hope she finds out whats going on

hutspa

thanks everyone for your replies...
she has high calcium...it was the serum ionized cal it was 5.9...also....she had the injection in nov...jan she had 2 episodes of her esphogus spasms(her throut literely closed up for minutes)....they did endoscopy it was normal....muscles aches for months and fatigue...just this monday she lost mobility of the left side of her tongue (still doesnt work) cat scans & mri of head shows normal no strokes or tumors....we have a spinal tap tomorrow morning....it keeps getting more bizare...not sure on other blood work levels except sugar is a bit high, but doctor didnt mention any other abnormalties....
thanks again...for your concern and input....I TRULY APPRECIATE IT

windblown

Hi hutspa: The muscle aches and pains your mom is having is listed as a side effect of Reclast, but I've never heard of it coming on in a delayed fashion like you mention. The half life on bisphosphonates is pretty long at about 10 years according to Merck ( oral Fosamax), but I haven't read anything in particular about the iv form like Reclast.

Normally bisphosphonates lower your blood calcium levels, unless your mom is just one of those who doesn't fall into the norm on this.

Since she has had breast cancer, is the Dr that treated her for that the one that found the elevated cal level? If she hasn't had a follow up test for her ionized cal, it might not hurt to repeat it just to make sure it wasn't a lab error. I know when my level goes up they usually retest just to verify it. My highest score was at 6.8 (serum ionized) and at that level I have a lot of chest/arm pains, and arrhythmias.

I hope they find out what's going on with these additional test's since she is having quite a few unusual symptoms that sound like they are stroke related, but since you've said that was ruled out that's really good news.

Good luck with this, you're a great daughter!!!

hutspa

thanks sooo much windblown :)

she is gonna have her blood taken tomorrow for recheck on cal....she has been "dealing with" the fatigue and muscles aches but last weekend she started getting migraines, which is very uncommon for her so monday she went to her endo doc whos checking blood...i made an appt for her to see her oncologist for 7/9, shes getting blood for that appt taken on the 3rd...i wanted him envolved because im am scarred to death the beast cancer has metasisized to bone (because of her cal level)...they may order a pet scan...the only indication of bone met is the cal but it seems like enough to scare me!!! nothing with her seems black or white...little things point to all different directions....ive been looking for info on what would be the levels of cal serum...i found that 4.4 - 5.3 is norm but do you know what the mild high, moderate high, and dangerous high ranges are???

i sure hope you can find the reason for your elevated levels...what have they ruled out in your case...whats being done for you?

windblown

Hi hutspa: I know how you feel with the cancer situation. When my cal levels were discovered they tested me for every type of cancer you can think of. I didn't have any symptoms at the time, so it was really hard to try and zero in on one area to look into. Every test I had came back negative, so I'm still trying to find the answer because my heart probs are getting worse. It's been 2 years now seeing specialists and I still don't know what is causing it. My PTH levels are always low/normal or low, so hyperparathyroid was temporarily ruled out with a sestamibi scan. I do have breast, ovarian and thyroid cysts/nodules, but none have been biopsied, so I can only go by the ultra sounds/sono's that say they are benign.

As you know all labs give out different normal/reference ranges for most test's but at my lab normal ionized cal is 4.7-5.5, and serum total cal is 8.5-10.5. Since the highest reading I ever had was 6.8, I have asked many times how high can the test be before it becomes an emergency. Of course I've gotten differing answers to this question, but they all sort of agree on the fact that the number has to be at least 3 points *out of range* for it to be treated like you need to go to the hospital. Remember that this info can vary and I can't say for sure that you can apply this to your mom. So if her ion cal was 8 or her serum total cal was 13 that would qualify as a emergency.

When the score is say 4 10th's of a point above normal, like her's is they call it mildly or slightly elevated, so I wouldn't panic, since 5.9 isn't that far out of range, but still is something to watch. It's just really important that her oncologist or cancer Dr is aware of this since he/she is the only one who would be able to analyze this reading.

Does she have any of the symptoms of hypercalcemia?

Facial muscle spasms (around mouth or eyes)

Generalized muscle spasms (in any area)

Confusion

Nausea

Vomiting

Constipation

Dehydration

Pain

Blood pressure changes or irregular heart beat

Tiredness

Abdominal pain

Large volume of urine

I got this list from the National Cancer Institute, so you can read this list there. They also have a toll free number you can call for assistance M-F, or general info from on call clinicians. (1-800-4-Cancer). Please don't jump to this conclusion until you know more! My thoughts are with you.

Hopefully this test is just a fluke, or lab error, but in any case let her Dr know. If my level was the same as hers they wouldn't treat it as an emergency, but only watch it, but then I haven't had cancer. The main thing is to stay focused and not panic since at the moment you *are* doing everything you can. As I mentioned before giving a bisphosphonate like fosamax et al, can be a treatment for this to lower the calcium level, that's why I'm confused on this since she is already getting a bisphos.

Let me know if you need anything else, and remember these scores vary from person to person based on medical history, so I don't know what it may mean in your mom's case, but I'm sure it's something minor. Just stay on top of it as you *have* been.

Good Luck...

windblown

Hi again: Sorry for the long post but I forgot something. Was this cal test the only 1 she had or did she have multiple high readings? Usually, they expect to see several readings that are slightly high or high before they pay a lot of attention to it, because our calcium levels vary so much during the day. Was she taking cal before the blood was drawn? because that can raise it also if she has a metabolism prob.

You might want to suggest having a PTHrP (Parathyroid related protein) test done, which is a blood test that checks for certain cancers, one of which is breast or re-occurrence of it. If this test is elevated it can tell the Dr a lot. If this was the only elevated test, expect them to recheck for multiple results that are similar, to dx hypercalcemia.

Good luck and get some rest, you have everything under control. Take Care!!

Jacqueline

Windblown, I know you are very well informed, and I learn a lot from your posts. Are you certain that your
high calcium level isn't do to hyperparathyroidism?
Have you been tested for that recently? Have you
once again checked out Parathyroid.com?

hutspa

thanks windblown....im grateful we have found eachother....i luv u already xoxoxoxo.....well, the spinal tap is done and now we wait, results should be thur afternoon....as far as those sypmtoms u mentioned tiredness yes the rest not so much, she has muscle aches, not pain or spasms....fatigue seems to be a styptom of literally 1,000 things :) just reading about it makes me tired...lol....since u have done this so much in the past 2years, what is the best time of the day to get blood work tested for cal levels? does a regular total cal blood test (ex reading rages 8 - 10) mean her serum ionised was ok or is that only detected when specifically tested....

well the good news is your tests come back "normal" ive learned over the past 20 years with my mom the word "normal" is great 2 hear....but not having an answer is frustrating esp when u r not feeling well....have you had to have the excess calcium flushed from your system yet (read about this online)...guess they do this with a type of salt saline....are you on any heart meds....(moms on ateninal).....not to pry but how old r you (im 38, moms 58)....what type of meds do you take?...how about your vitamin d levels.....how is your heart being affected, what types of heart problems r you experiencing.....not that i will have any answers for you but i would love to be able to understand ur situation and do WHATEVER i can for you 2.....

windblown

Hi hutspa: I hope you have good news with the spinal tap!!

Your welcome, I'm glad I could help. I'm 54 not much younger than your mom :) If you want to find out some facts on posters, all you have to do is click on their screen name and it will take you to their web page. At the webpage you can read *some* facts about the individual depending on what they've decided to share with the group. I have my fav links listed if you want to do some reading. I'll try and include some info on hypercalcemia and lab tests and maybe that will help to explain.

On a total serum cal test they are testing both 1. unbound (free) calcium and 2. bound cal.

On serum ionized cal they test for one thing and that is Free (unbound) calcium only.

Normal ranges for total serum cal, at my lab, is 8.5 to 10.5 so any number between those 2 are considered normal.

Normal ranges for serum ionized cal, at my lab, are 4.7-5.5, so any number between is considered normal as well.

Don't confuse the two tests or their scores, each has different normal ranges. You said your mom's ionized cal was 5.9, so that would be 4/10ths of a point above normal at my lab. Does this make sense now?

I just finished taking Forteo for 2 years and now I'm taking Evista. I did really well on bmd with the Forteo going from severe osteo to normal in my spine, but my hip is now in the osteopenia range.

My vitamin D levels are haywire along with the cal, so hopefully someone will be able to figure this out. I have a dx of hypercalcemia of unknown origin.

I have mitral prolapse, heart murmur, high blood pressure and a family history of heart disease. My Dad died at 56 from a heart attack, with no known reasons why. When my cal level goes up, I get moderately severe chest pains that radiate over my shoulder and down my arm. Lately the pain hasn't been as often as it was the last time my cal was high, so hopefully my cal is going down. Forteo can elevate your cal and vit D 1,25 and it lowers your D 25, so maybe now that I'm off of that it, all 3 scores will go back to normal. The only problem is my cal was elevated before I started the Forteo. When you have hypercalcemia, they immediately check your parathyroid (PTH), and mine is in the low/normal range and the sestamibi scan I had of it was negative, so *as far as I know* I don't have hyperparathyroid. Since all the cancer tests are negative they can't explain my cal prob. Of course something could have been missed, since looking for cancer without symptoms is pretty difficult, like looking for a needle in a haystack. I do have thyroid nodules, but they are too small to biopsy. The breast and ovarian cysts I have are also suppose to be benign, but I've never had biopsies on them either, so we'll see what happens.

Let us know what you find out with your mom, and I hope you are hanging in there too.

windblown

Hi Jacqueline: As far as I know, I don't have hPTH (hyperparathyoid). My PTH levels are always low/normal or low and I recently had a sestamibi scan looking for a adenoma, and it was negative. I have read all of Dr Normans site, and understand that hypercalcemia and low PTH can still be considered as hyperpara, even though my levels are low unlike your high PTH. My problem is my insurance won't pay to go to Florida, I live in CA so I'm going to see someone at another Univ Med Center near me, and see if they can't figure this out.

Thanks for your concern, I hope your trip/surgery in Florida solves all your problems.

suzsezok

My mother has had a high volume of urine lately and still hurts from her fall on June 19, where she hit her chest on the seat of her walker. Her doctor mentioned reclast and she has that appt tomorrow for the injection, but she doesnt want to go through with it. I am not sure with all the other problems she has if this would benefit her or what do you all think?

windblown

Hi Suze: Why doesn't your mom want to do the treatment? Is she afraid of the side effects, or just another treatment in general?

It's really hard to answer this, especially since I have no experience with Reclast, but in the end all you can do is weigh the risk v benefit.

Has she fractured a lot and does she have low t-scores? If that is the case and Reclast would help to stop frax's then the treatment may be best, but of course there is no guarantee with any treatment.

I've had 6 frax's and took Forteo for 2 years, and I have to say the side effects I've experienced (with other meds) can't compare to the ordeal of going through another surgery to fix a fracture.

Hopefully you two can figure this out, because it's impossible to tell you the answer without being in her shoes.

Good luck with your decision...

Toot

I would not take reclast either. I think it is too new and too experimental at this point. Too many are having horrible side effects. I would make that a last resort!

suzsezok

She fell on June 19, and hasnt recovered from the pain in her chest from that fall. Nothing fractured, they seem to think shes bruised inside around the chest wall or ligaments are damaged. She holds her chest when she coughs or sneezes. Very much pain. Im not sure if she could take the side effects of the Reclast and the pain she feels now.

hutspa

i wish we had researched reclast before my mom took it....she had a gut instinct not to take it.....the problem is its a once a year injection so if it has bad side effects get ready for a long year or two...its scary to think its in your body and you cant get it out or stop taking it if it effects you badly...we would not have taken it !!!! spend tonight researching all the pros and cons.....good luck to you both

windblown

Hi hutspa: I forgot to mention something that you asked. The best time to check cal is in the morning.

If they checked her ionized cal and it was above the range, then it's no longer normal, same thing with total serum cal. Always follow the reference range listed on the lab sheet. If either test is above normal it should say so with it mark in the high or low column. Some labs print these things out differently, but they should say whether or not it's normal or not with a notation of some kind, like low, normal, high. But if they don't do that, you can figure it out by looking at the ref range (aka normal range) listed. Anything above or below those numbers, which are different for each test isn't normal.

Love to you too, again you're a great daughter!!

windblown

Hi suzsezok: The reason I asked about why your mom didn't want to take the Reclast was I had a feeling it might be a gut instinct like hutspa mention. We can't force someone to do what they don't want to, but sometimes their decisions are based on irrelevant things so that's why I asked.

There's always the possibility that she won't have any side effects, but again like hutspa said, it's a yearly injection (large amount) and once you take it you're in for the ride, so to speak. There are quite a few on this board that had nothing more than a few days of mild flu like symptoms, but there's no guarantee she'll react that way.

You know your mom best, so you can only do what she and you thinks best. BTW, what does her Dr say about all this? Does he feel it will stop the frax's or make her heal faster from the kypho if she get's it? Today, Drs are routinely administering Reclast pre or post op with hip replacements, because it helps to speed the bone healing process. I talked to someone on another board who had several kypho's and on the 3rd one they gave her the Reclast and she feels she healed must faster and was up and around sooner because of the shot, so who knows what the answer is.

Do your family members have any opinion on this, even though they aren't helping you out any? This is off topic but do look into the county services through Elder Care where you should be able to get some help, that's one of the things they do. If you don't want physical help, they might give you some financial help to pay for her care.

Good luck

hutspa

hello everyone...just an update
my moms spinal tap went well and the results were normal....that really knocks out alot of things :)...after speaking with her oncologist's nurse, she was taken off aromasin and her oncologist wants to see her thursday...i think at this point the doctors are leaning towards the effects of aromasin and or reclast....he may order a pet scan or bone scan to rule out breast cancer return, but her problems do not seem related to that at all....she seems to be improving "a hair" everyday and is definately not getting any worse....what a journey...thank you to you all for your care, concern and knowledge...

hey suzsezok....did your mom get the reclast...if so how is she feeling, i hope well....it has worked for so many people and i do hope your mom is one of them

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