[snelsen]

#1061983

Yes, I have had Zolendronic acid, which is the same as Reclast, or Zometa. I have had it IV once a year for the past ten years.
I take it for to improve my bone strength, for I have osteopenia, and some osteoporosis. It has really helped my bone health, and most of my osteoporosis has moved to osteopenia. (I did have breast cancer, but no metastatic bone involvement. This is how it was first used.)

I gather from your post that the endo prescribed it? Or another doc? Do you know why? Did you have IV over 15 minutes? Was the dose 5 mgm? Some people have some transitory side effects for a few days, namely aching bones, or general malaise, even flu-like, just not feeling 100%, and sometimes feeling crappy. It resolves in a few days.

I have no idea why your research tells you that it is not recommended if you have had a thyroidectomy. I can find no reference to this, even an unreliable one.

With hyperthyoidism, the incidence and onset of osteoporosis is increased, and it is one if the worries (along with cardiac) that docs are concerned about with untreated hyperthyroidism, especially over a long period of time. Prednisone is another drug that raises havoc on bone strength.

I think you will feel better soon. Would you have refused the drug if you had received the information sheet before the treatment? What is the reason it was prescribed? If it has been suggested that you have it once a year, and you do not want to do that, or do not want it for any reason, just don’t get it again. You do have that choice with this drug. (but we DONT have that choice with our thyroid hormone if we are taking it! (:
Check all I said out with your doctor, too.
Shirley

[lilsispatrick]

#1017976

Just had a Reclast by IV last Wednesday and I think it was the biggest mistake of my life! I’ve never hurt so bad until now! On top of the already rapid heart beating and shin pain and tremors, I now feel like every bone in my body is breaking. My endo never warned me of the side effects of this medication and it wasn’t until after the infusion was done, did they hand me a paper telling me of the possible side effects! Has anyone else ever had Reclast? My research says if you’ve had any thyroid/surgery, its not recommended! Why would my endo who knows of my conditions do this to me? Ugh!

[lilsispatrick]

#1061984

I do have osteopenia and was put on Fosomax which made me feel sick so that’s why my endo ordered the Reclast. It was the 15 minutes but my dr told me every 2 years? If I would have known beforehand what the side effects would be, no I wouldn’t have done this! I’m on day 5 of not being able to walk because of the pain in my legs. The headache has not gone away. I was on medrol for over a year, had radiation for opalmopathy in my eyes, right side thyroidectomy and pretibial myxodema. My shins were already in such pain, I still have tremors but my levels are normal along with the heart palpitations. Now the added effects of having the Reclast done is just making me miserable. The dr said this should go away in a few days but, it hasn’t even subsided at all, just seems worse! I’ve seen a lot of posts on other websites with people who have had the same side effects and some lasting more than a year! Wonder how many dr’s have actually had this done themselves to see what it feels like. Just frustrated & in pain. I feel like I keep moving backwards instead of forward with all of this. Thanks for lending an ear!

[erica]

#1061985

Wow. I am so sorry this is happening to you! This might sound drastic, and I don’t want to sound like one of those “sue happy” people because I am not at all, but I think you have a case here. Doctors are supposed to inform you of possible effects so YOU can make the choice you feel is right for you. After reading your history, your body has been through a lot! Personally, I think the more the body has to deal with (ailments and their treatments) it makes one more susceptible to more side effects. If you were not warned of the effects until it was too late, that is despicable. Are you currently taking time off of work? I am no lawyer, but this just doesn’t seem fair at all!

Are you taking anything for the pain? Sometimes having someone act as your advocate to talk to the doctor is belter. I had my mom come with me to appointments with paper and a pen. We went with questions and didn’t leave until they were answered. I have found doctors are less rude if someone else is present as well. My mom made it clear these symptoms were not “in my head” but real and need to be addressed asap. Have a family member /spouse call the doctor back and demand help. Sometimes you need to fax permission for someone else to talk to the doctor about you, other times if you pass the phone over they don’t mind.

Massage could be good for your circulation to help get the drugs out of your system. Many places have introductory rates of $35 or could be covered by your insurance. Explain to them you have had a treatment etc.

Sending positive vibes to you ! hope you feel belter soon!!!!

[snelsen]

#1061986

Hi, you are correct. The standards of care have been changed to every two years. As you said, this is day #5. You sure have had a lot of steroids, Medrol for a year is a long time. I suggest that you do call the office today, leave a message with your exact symptoms. Also ask what you can take to relieve them, and when you should call back if you do not see improvement in your comfort by Wednesday. As I remember, ibuprofen helped the bone ache, but it was not that big of a problem for me , and I was not unhappy. Having Zometa (same thing as Reclast) has vastly improved my bone health. The risk for fracture is so great,t hat I am very glad to have this available. There are ongoing studies on this drug. I am so sorry you are having continuing discomfort. It sounds like you were already in pain with pretibial myxedema. So that makes everything worse for you.

I do not think it is reasonable or logical at all to even consider suing anyone. You have not been mistreated. And to clarify, you have said that no person, at any time, spoke with you about Reclast before you had it? That seems unreasonable.
Having said that, when it was suggested to me, I was grateful, for I had severe osteoporosis (lot is chemo and steroids for TED)
and it has definitely helped me. You probably will not know if it did/did not help you until you have another DEXA, which probably won’t be a year or two. Presume you had a baseline DEXA?

Erica had some nice suggestions re massage, and having someone to go with you to appointments. If you want someone else to have access to your medical records, you do need to sign a Medical Release of Information Form. If you have not done that for yourself, I suggest you do that, asking dictated reports and labs results sent to you so you can have your own file at home.
Shirley

[erica]

#1061987

I do believe when one is ill and in pain it is very possible to miss key info the doctors or nurses are throwing at us. That is why it can be beneficial to have another present at appointments, glad you agree.

But if in fact lilsispatrick was NOT informed at all of possible side effects that is grounds for a lawsuit. Imagine is she/he has this a year? That could severely impact their life and they might not have proceed with it had they known. I am rather shocked that you would think she was not mistreated. Hospitals are busy places, sometimes they shift us around like objects, it seems very possible that she was not given the correct info until it was too late. That said they might come back and ask why lilsispatrick did not ask, but that is not her job. She is the patient and I believe it is the law that the doctors, pharmacists, and pharmaceutical companies inform patients of all possible drug side effects before they take the drug. Especially with her history and that type of treatment! If she has to be off work 6 months or longer and that was never her plan because she was not properly informed to even make that an option, how will her bills get paid? Is this her fault, clearly not. She deserves restitution.

[Ski]

#1061988

Hi Erica,

Talk of litigation is definitely premature when we’re talking about 5 days of discomfort, so far. Certainly, if your nightmare scenario comes true and she is crippled for months, there ought to be talk of compensation ~ but if she is able to resolve the pain and feel well soon, the litigation process would not be productive or successful. While the argument can be made that someone overlooked discussing the potential side effects, the level of damages for a few days’ discomfort would be so small that it likely wouldn’t even pay the attorneys.

[erica]

#1061989

Well I would have to disagree and actually the law disagrees as well (it is called ‘informed consent’). It wouldn’t matter if she left the treatment doing backflips, proper procedure was not upheld. Most attorneys would work pro bono on this simply based on the law that was broke and the fact that she was not given the right to make an informed choice about her health. Of course the case would be stronger if in fact she is ill for some time, however, I hope she recovers quickly. It is a basic medical principal and law here that has been broken. A case like this could save lives by making medical staff more aware of the importance in notifying patients of all risks involved before procedures.

[snelsen]

#1061990

Hi lilsispatrick,
I am wondering how you are feeling today? I sure hope your discomfort after the Reclast is resolving. Did you try ibuprofen?
Did it help? Did you check in with the doctor’s office? I realize that he already said that it would get better in a few days, and I am hoping you are seeing improvement and getting more comfortable each day. Do write to give an update on how you are feeling. I sure am sorry you got pounded with discomfort after the med. The good news is, that you do not need to think about it all for two years. And at that time, you can get a DEXA, see if your osteopenia has improved, and go from there, either decide to give it another go, or decide not to. My heart goes out to you relating to all the steroids you have had. I HAVE that drug, and how it made me feel. ANd it is not a friend of bones, that is for sure. But sometimes worth trying, and sometimes it is a life saving drug in certain situations, like extreme allergic respiratory events.

How much is your pretibial myxedema contributing to your leg pain now? I know it can really hurt. Are you in the beginning stag stages of that, and/or did the steroids help it? My understanding is that topical steroids help a lot, and if there is a lot of edema, support stockings help. So, not sure where you are with all that, but if you are interested in a very nice review from a reliable source, the Journal of Clinical Endocrinology and Metabolism, just let me know. I’ll send the link
Do write again.
Shirley

[snelsen]

#1061991

Erica, I think further discussion of litigation, and a profession for any of us to speak with authority about a field we do not kno at all, is not in the best interest of anyone. This is a subject initiated by you, and it is time to have closure. There has been enough dialog about a subject that Lilsispatrick did not ask about. And if she did, not one of us on the forum is qualified to state knowledge in this area. With that in mind, I will not address any of your proclamations. We’re done.
Lilsispatrick can explore this further if she is interested.
Shirley

[lilsispatrick]

#1061992

I’m sorry if I have caused any arguemnets here. I understand all of your concerns & they’re all well appreciated but, this group is here to help all of us understand from one another what we are going through not for causing disputes with those who help us and share such personal information. So please forgive me for causing an arguement! About how I’m feeling one week after the Reclast..well I’m not in the extreme pain I was in a few days ago..thank goodness but, I still have a lot of pain especially in my thigh area, low back, wrists & continued headache. I did contact the dr again and I was told I could go to urgent care if I needed but this should go away. I feel that as long as I’m able to get around enough on my own I can hold off on going. These days with my medical provider, the only way to speak with a dr is through email..weird but that’s how it is. So when I emailed my dr about the Fosomax making me ill, he suggested the Reclast & only told me I would need to take vitamin D & calcium indeffinately & then told me he would order it & have Oncology set the appt. I should have asked more about it but, at the same time I’m suppose to rely on my dr. That’s the first time I’ve never been explained anything! I usually always ask lots of questions & make sure I have a family member at each visit but this was done through email! I had the biopsy on right shin for the myxedema & still have a bump on the left side which I’m suppose to use topical steroids for but haven’t done so yet I never know how having this GD could effect your entire life! I took the Medrol that long because of the eye swelling too, up until I had the radiation done. Yes a long time, a lot of weight gain & a lot of pain! Thank you all for your answers & concerns in this. It really means a lot to have another voice out there. I will keep you up to date on the effects of the Reclast & when I’m scheduled for my next DEXA! Thanks again!

[snelsen]

#1061993

Hi, you caused NOTHING! The subject was presented, and a couple of us chose to address it, for that was the subject of her email. I think we are done with that.

So glad you see some improvement, even if just a little bit. I really do think you are headed in the right direction, and I am so darn sorry that your reactions were so significant. But I think you called it right, re not going to Urgent Care. They would have no clue of your history, and in this case, you would simply end up spending a lot of time expaining how you feel to them, and it could be a circular event, where they referred you back to your doctor! Having said that, if you feel you have an emergent situation, or simply want to be seen, use your own good judgment, and get seen! ” title=”Cool” />

I am guessing there would be a lot of people on this site who WISH they could email with their doctor. I can, and I love it, for information does not need to go through one or more people, along with the accompanying misinterpretations that can happen. I really like it, being able to explain things in my own words, to the person I am trying to get the information to!

You’ve got it right! GD DOES affect our entire lives. It has been very discouraging to me over the past 2+ years. THis site has really helped me for support.
I’m off to the dentist to get a crown. I see $ signs!
Shirley

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