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PLEASE HELP MY TWIN SISTER-RECLAST ONCE A YR INFUSION

morning132
3 Recommendations

My twin sister had the Reclast infusion over 3 months ago. Afterwards, she experienced EXTREME pain in her joints and muscles. She has had blood tests, etc. done before and after this infusion. This pain is absolutely directly attributable to Reclast.

The pain I am describing is not just flu-like symptoms. It is extreme, unbearable pain. Prior to this infusion, my sister was very active and healthy. She is now is such pain that she can hardly function. It is extremely painful for her to walk or do anything for herself. The result of this infusion has been debilitating. It is getting worse. The pain is so bad that she has to sit up on a couch and try to sleep. If she lays down, it is painful and she can hardly sit up again. Even touching the sheets is very painful.

While she was very opposed to pain meds, she finally had to start taking them. While the pain meds help some, they do not do much for the pain. I am very concerned that this extreme pain is going to cause my sister other serious issues. Extreme pain for long periods of time can certainly cause her to have a heart attack.

This Reclast infusion is new on the market and the docs don't have much information regarding these side affects. We have contacted Novartis and their suggestion is aspirin. That would equate to putting a bandaid on a large gaping wound!!

Has anyone else takent this infusion? Was your pain unbearable and, if so, how long did it last?

Do you have ANY suggestions to relieve this pain? Do you know of any physicians who have dealt with this issue?

Your recommendations are greatly appreciated.

Explore topics in this discussion:

Exercise Surgery Chronic pain Nexium Zantac Meditation Prevacid Vicodin Tramadol Prednisone Fibromyalgia Osteonecrosis Arthritis Boniva Aspirin Protonix GERD Zoledronic acid Ibuprofen Fractures Physical therapy Fosamax Fever Reclast Weakness Pain Heart attack Heartburn Depression Acetaminophen Prilosec

59 replies

Franceline

I have had the Reclast infusion last November and had NO side effects. Could you find out if the infusion has been administered properly, mine was rinsed afterwards for the same time it took to administer the medication that is something like 15 min.
Franceline

ViHay

Your sister's reaction should be a warning for all of us. The FDA does through its financial embedding into the Pharmaceutical Industry push "wonder drugs" such as ReClast upon American consumers. A once yearly drug while very appealing to both consumer and doctors alike- is too much of a risk for most consumers--- for many adverse side effects do not appear until AFTER the drug goes on to the market. Did your sister try other injection /IV drugs before taking once yearly ReClast ? Such as Boniva IV - injections/ quarterly ? And there are many more such drugs in Clinical Trials at this time.

sdivas

Hello pain, since you are using meditation, you may be interested in checking Belleruth Naparstek guided imagery cd for pain which can be found: www.healthjouneys.com and www.amazon.com. She also has other guided imagery cd's, but nothing yet for bone loss. Sandi

pain

I had the reclast in October. The pain is beginning to lessen now, but my rheumatologist is GREAT!! She first prescribed Salon Pas (can be bought at Cosco), then the prescription Volterin Gel. It really works to relieve-especially at night. Because it is a cream, you can put it right on the worst spots. You will be in my prayers, as I know the pain and will not be having it again this year. I use the salon pas patch on less ache areas, and alo had an MRI on knee where the pain was the worst. Hope all helps. I also started meditating, and pilates which helped me relax into the pain and thus, not tighten up which makes the pain worse. "This too will pass"...but we don't know when?

Jgibb

Hi, my mother is also having the same problem muscle aches, bone, and joint pain. She received her infusion of reclast on 11/30/08 and has been in pain ever since and it is getting worse. This was her second infusion she had no problems with the first. Please if anyone has any information let me know.

morning132

Thanks for your post, MamaMarks. I will certainly remind my sister about having more blood tests done with respect to vitamin deficiency. I am glad to hear that the infusion worked out well for you. True, we are all different.
And, thanks for the compliment regarding my being a great sister. I love my twin very much. She is such a remarkable person. She is truly the kindest person I have ever known. She is not only my twin, but my very best friend. She has always been there for me and helped me through so many difficult times. I don't know what I would do without her.

Thanks for your post.

morning132

MPB,
I advise you NOT to consider the Reclast infusion. You obviously already have the pain of fibromyalgia. The pain that you now have would most likely increase greatly if you took the Reclast infusion.

Thanks for your post. Take care.

morning132

Leogorge, so sorry to hear that you also are suffering such horrible pain from Reclast. Everyone is different and hopefully you will not continue to suffer. Yes, I think Reclast is particularly bad for those of small stature. Thanks for understanding that when one twin suffers, the only feels her pain.
Take care and I will keep you in my prayers.

MamaMarks

morning132

I'm sorry to hear about what your twin is going through. Not everyone has those severe reactions to Reclast though. I just had my second one yesterday and my side-effects are, thus far, very minor. My infusion last year caused the typical side-effects of low-grade fever for 24 hours, soreness in the infusion site for 1 day and weakness and sore muscles for a week then 3 weeks later I was pain free for approx. 6-7 months. Of course we are all different and our bodies respond differently to things as in your sister's experience and everyone else's experience who has posted, on this site, about their adverse reactions to Reclast. It is definitely not for every one.

I read someone's post on here about vitamin D deficiency and I too am deficient in that vitamin and have severe muscle/bone pain with weakness when it's low. If your sister hasn't already had her blood checked, recently, for vitamin deficiency, please remind her to do so. It could be her turning point! My doctor told me yesterday that we need 2000 i.u. of vitamin D daily. I too am small and thin.
I wish only the best for your sister and hope she starts feeling better soon. My heart goes out to both of you. You are truly a great sister.

April995

Hi Mary,

I was taking perscription Zantec and still having awful heartburn for weeks, and my stomach was killing me. I also have an Ulcer.
I even went to my Cardiologist three weeks ago, thinking I was having a heart attack!

When I was at the health food store last week I bought "Reflux-Away" by, NaturalCare.
Its Homeopathic , for Stomach distress, heartburn, indigestion, gas etc.
So far this has work far better then Zantec for me. I'm pain free now.
I just take one tablet with meals, if I remember! You can take two tablets, but I thought I would try one first, and it works.
No Heartburn, or stomach pain.

This has got to be better then taking a perscription drug, plus this works for me.

Take care,
April

MPB

Hi Paula,
I also have GERD and other stomach problems. Am taking Protonix now. Tried Boniva IV, four times a year about two years ago, stopped after second infusion. Got stomach pain and some muscle pain. My bone density scores stayed the same but didn't go back on the Boniva. Tried Fosamax orally before this and had to stop immediately--too much stomach pain. You may be right about having done so much in your life and you "keep on truckin". Maybe Reclast is just too powerful. Am trying to get some more answers from physicians I've gone to for fibromyalgia and my gynecologist whom I have known for years. Will post any thing I hear. Also, I'm looking at websites and anything I can find on the internet. Seems like a relatively new drug. Thanks for your help,
Mary

MPB

Thank you for your insight into Reclast. It is helpful to hear from people who have considered taking it. I have fibromyalgia and am a little leary about taking it, even though my doctor is encouraging me. Doesn't seem to be too much in the literature about long term side effects.

Hope you stay well,
MPB

leogorge

I too am very small, 5 ft. 3 in. and 108 lbs and suffering muscle and joint pain after receiving Reclast. It started about 2 weeks after the infusion. If I still have 11 months of pain to look forward too, I don't know how I'm going to survive.
I wouldn't recommend Reclast to anyone who is very small in stature.
I have a twin also and would not let her go though this.
I understand, her pain is your pain.

TeamInspire

Hi April,

We generally only share the replies with the people who posted them.

Beth

April995

Hi Beth,

I didn't find anything offensive, but I deleted myself from this disscusion last night!

I would like to be emailed what was removed also?

Thank you,
April

morning132

Yes, please do so.

Thanks.

TeamInspire

morning132,

I removed it; but I can send it to you via message if you like.

Beth

morning132

Beth,

I have no idea what you are referring to with respect to "personal attacks". Perhaps I missed something, but I did not post a message that I would consider offensive.

Beth

Ladies,

I've had to remove some replies to this discussion because it was starting to turn into personal attacks and that is not what we are here for; Inspire works because we respect each other. This is obviously an emotional topic but let's not assume the worst of each other.

If the discussion gets out of hand again, it will be shut down. If you have any questions, please let me know.
Beth, TeamInspire

jmeavc

To the lady who's twin sister was suffering so from the binfussion, my life has been devestated from the thing. I am almost incapacitated. Have you found anything to help? Please contact me jean.eseppi@yahoo.com or call me 860-866-6669. I'm in desperate need of help.

Thank you,

Jean Eseppi

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