PLEASE HELP MY TWIN SISTER-RECLAST ONCE A YR INFUSION

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.

By raindancer
Posted October 13, 2008 at 2:06 pm
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This is the reason I have decided not to take Reclast, it is too new and I have auto-immune problems already. What if my body tries to reject it? I can't lock the barn door after someone steals the cow and eats it!
Right now I am at an impasse when it comes to any medications.
Vicodin is a good pain reliever but has some possible side effects.

By doggiegirl
Posted October 13, 2008 at 2:12 pm
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i have been sick to my stomach for the last 3 months.. starting the day i took reclast. it has runied my life. have had to cancel a trip to paris and many other things. no answer from the doctors

By raindancer
Posted October 13, 2008 at 2:42 pm
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One of the main ingredients in Reclast is the same thing that is used in Fosamax which gave me terrible stomach problems several times. Now I have Gerd so bad that I am on 80 Mg of Nexium a day plus Zantac. My Dr insists that since Reclast is injected, it will bypass my stomach but some people on Oral Fsamax did have a lot of problems.

This is just a thought but have you considered taking prilosec or Nexium to see if that will relieve any of your stomach pain? They usually take at least 4 to 6 weeks to do much good.

Yes, I know, the Dr will say that ReClast couldn't have caused it but....???? As for the other pain...I think Fosamax can also cause muscle and joint pain. and ReClast is the same thing.

Perhaps you can do a google search to find out side effects from the bisphosphates and see if you can track down some help for yourself. The Drs themselves do not agree on many of these meds so there is no guarantee on any of them.
Hang in there..I feel for you...
Paula

By morning132
Posted October 13, 2008 at 4:25 pm
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Raindancer and Doggiegirl,

So sorry to hear about your problems after taking Reclast and/or Fosamax.

The "evil" ingredient does seem to be causing people lots of pain and other issues.

Hope you both start feeling better.

I will continue searching to try and find a solution.

After all of the medical tests, my sister's doc did agree that it had to be the Reclast (ingredient) that has caused her all of this excrutiating pain).

Thanks to both of you for responding.

By morning132
Posted October 13, 2008 at 10:08 pm
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Sharo:

Thanks for your response. Yes, I realize that some people did not have severe reactions to Reclast. Many of them have had some horrible reactions. Because the biphosphate ingredient can cause side effects even when given in low dosages, such a mass dosage is extremely dangerous for those who have a reaction. I have read numerous reports from people who have consistently stated that the Reclast infusion "ruined their lives". They are no longer able to function as they did prior to the Reclast infusion.

While some people may say the drug does more good than harm, I have to wonder if those same people would agree if their lives were ruined or they had a loved one whose life was ruined or even taken away. Some people have died after taking Reclast.

My sister followed all of the prerequisites prior to getting the infusion.

I am happy to hear that you had only a minor reaction. You were one of the lucky ones.

I am just looking for a solution for my sister. I am not here to blame the drug manufacturer. I do have my opinion, but I will refrain from making any statements.

As for me, I will continue exercising (running) and stay away from any of these drugs that have caused so many people problems.

By huntc1
Posted October 14, 2008 at 8:55 am
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I received my Reclast infusion in February- I had flu like symptoms for 24 hours and have had no other problems- I also have several auto-immune diseases. I know I was a lucky one....
Please stop saying that Reclast is too new- Zoledronic Acid has been used for several years in Oncology.
You also need to remember that Nexium (and Prevacid & Prilocec) have been found to affect calcium absorption. Consider switching to something like Zantac.
http://www.msnbc.msn.com/id/16358462/

I am very sorry to hear about your sister, because of all the RX I take I know very well how debilitating some side effects can be.

By BoneLady
Posted October 14, 2008 at 12:01 pm
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morning132, I'm sorry to hear about the pain your twin sister is experiencing from Reclast. It is a known side effect of this drug included in the FDA-approved patient labeling for Reclast: What are the possible side effects of Reclast?
Possible serious side effects include:
• Low blood calcium (hypocalcemia). Symptoms may include numbness or tingling feeling (especially in the area around the mouth) or muscle spasms.
Call your doctor right away if you notice any of these symptoms after receiving Reclast.
• Kidney problems. Your doctor may do a blood test to check your kidney function before each dose of Reclast. It is important for you to drink at least 2
glasses of fluid (such as water), within a few hours before receiving Reclast, as directed by your doctor.
• Jaw-bone problems (Osteonecrosis of the jaw). Jaw-bone problems may occur in some people and include: infection, delayed healing after teeth are
pulled.
• Severe muscle, bone and joint pain. Tell your doctor if you have severe muscle, bone, or joint pain after receiving Reclast.
The most common side effects of Reclast include: flu-like illness, fever, pain in your muscles or joints, and headache that can happen in the days after you get
Reclast. A mild pain reliever such as ibuprofen or acetaminophen may reduce these symptoms. The chance of getting these side effects goes down with repeat
dosing of Reclast.
Tell your doctor about any side effect that bothers you or does not go away. These are not all the possible side effects of Reclast. If you have questions, talk to your
doctor.

I have never taken Reclast, but I had to discontinue Fosamax once weekly after some debilitating side effects.
I now take 680 mg strontium daily in the form of strontium citrate. I have been taking it nine months and I feel great!

If over-the-counter pain meds do not give your sister sufficient relief, she should ask her doctor for pain meds. You can read more about Reclast at www.pharma.us.novartis.com/product/pi/pdf/reclast_ppi.pdf

By morning132
Posted October 14, 2008 at 12:54 pm
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Huntc:

Thanks for your response.

Let me restate...the Reclast infusion is new as being used in this capacity (for bone loss). While Reclast does mention that one of the rare side effects is severe pain, they don't mention that it could be long-term. Taking ibuprofin or acetaminophen wouldn't touch the pain. Doctors are stating it is new when used in this capacity.
I am not sure why you mention Zantac, Prevacid or Prilosec. She doesn't take those meds.

By morning132
Posted October 14, 2008 at 12:59 pm
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Bonelady:
Thanks for your response. Yes, we know what Reclast lists as reactions. Their claim is that this reaction is rare and they don't mention how long. Contacting a doctor doesn't do much good other than them prescribing pain meds. She is working with her doctor, but he says Reclast is new in this capacity and that he doesn't know what else to do other than prescribe pain meds. While the pain meds help, the pain never truly subsides.
And, of course, she doesn't want to remain on pain meds forever. Additionally, as many of you know, most doctors are skeptical about continuous narcotic prescriptions with the DEA breathing down their neck.
So, it's a bad situation.
My only purpose in listing this post is to find a solution for my sister.
If anyone else has any suggestions, please post them.
All responses are greatly appreciated.

By raindancer
Posted October 14, 2008 at 1:56 pm
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For huntc1... I replied to the first post, I am NOT the twin sister!
I also take Zantac 4 daily in addition to 80MG Nexium and I still have reflux problems. I have to be scoped every year for precancerous lesions. I realize that Nexium and all PPI's prevent calcium from absorbing..it would have been nice if my Dr had told me to use Calcium citrate instead of Calcium carbonate. I now take Cal citrate and extra Vit D. I cannot take aspirin or Ibprofen because of my stomach.
However, I am not yet planning on ReClast infusions and may never have to resort to them. I am happy it turned out well for you but I am not willing to chance it.
I have checked with Guillain Barre' Society and they cannot make recommendations for or against. Since the 6 years on Prednisone for Polymyalgia is the reason my bones have disintegrated to the extent they have, I will never be able to take Prednisone again. Therefore, I have no intention of trying ReClast until it has been used longer for osteoprosis than 3 years...I am thinking maybe 5 years down the line I might think about it, depending on the results of several years of use by others

I am looking into the nasal spray, which will not build bone but helps to slow bone loss. Perhaps that along with my exercise program and added nutritional helps will slow it down as well. I am only 78 and until this came up, have been very active all of my life [except for 9 years when I was disabled by GB and PMR]

I feel for anyone who is in constant pain and other than prescription drugs or possibly meditation or other alternative therapy, the only thing I have found to help is attitude..mine has always been "well maybe tomorrow, I will feel better" and after 6 years of that wih PMR, I FINALLY did!

Wish I could offer more help but don't give up, there is help someplace.

By morning132
Posted October 14, 2008 at 2:44 pm
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Thanks again for your input, Raindancer.

You know, I have to wonder if this issue might have to due with the size of my sister. She is very small, 5 feet and less than 100 lbs. Perhaps this infusion was just too strong for someone who weighs so little.

By catwoman
Posted October 14, 2008 at 3:43 pm
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Perhaps your sister should requestr as referral to one of the pain clinics that try to treat severe, chronic pain. They use a variety of methodsd that are not in the standard MD bag of tricks. I'm not sure if they could help since the mechanics of this pain are unclear- (exactly what is it about the reclast that causepaapin? what is the reaction in the body?) But pain clinics are the pain specialists, so its maybe worth a try. -Nancy

By raindancer
Posted October 14, 2008 at 4:14 pm
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You might be right on the dose being too much for such a tiny person..and I do think catwoman had a good suggestion, it is horrible to have terrible chronic pain and hear some asinine suggestion such as "take more aspirin or Iboprofen". If it doesn't work at suggested dose, then taking more probably won't help. Anything over the maximum suggested dose is too much for extended use.

My sister nearly killed herself by taking over 9,000 Iboprofen in a 2 year period because her DR told her to take double the dose until the pain let up..it never did let up and he didn't monitor her intake so she nearly bled to death!
If I had known how much she was taking, I would have insisted that she get off that and onto something else!
She is now on Vicodin which helps with the pain and yes, it can be addictive but we will worry about that when the damage to her back is finally repaired.

By Tom-WI
Posted October 15, 2008 at 1:24 pm
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Hi Morning,

I agree with Catwoman, a pain clinic would be a good start. My wife has used them for chronic spinal pain with some good results. There are many approaches to try these days. Accupuncture or accupressure might be worth a try. There are also the TENS type of stimulators. I hope and pray she finds relief soon, and recovers her life.

Tom

By morning132
Posted October 15, 2008 at 1:30 pm
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Thanks Raindancer and Catwoman.

Are you referring to the pain management clinics?

My sister has tried that route. She had a problem with her neck. By the time they got through, her neck problem was much worse. She was injured further via the physical therapy at the pain mgmt. clinic. Then they sent for some type of steroid shots in her neck and it never helped at all.

She couldn't hold up to any physical therapy right now and she sure wouldn't agree to take another injections of anything at this time.

And, I can't blame her. I wouldn't take a chance on additional injections right now. And, as I said, she couldn't hold up to any physical therapy right now. When she is able to move about and leave her house, she can't even walk long enough to shop in a store with her husband. It is just too painful.

She does have her good days now and then (well, good by her current standard). But, the pain is just always there.

As a twin, you can only imagine how close I am to my sister. She has always been my best friend and we always stand each other through difficult times. We are 58 years old and we talk everyday. Even when I worked in Zurich, Switzerland, I talked to her everyday. We worked for the same firm and when I wasn't traveling, we sat side by side at the same firm until she retired. She is everything to me.

Wouldn't it be nice if all siblings were this close?

I really appreciate both of your suggestions and any additional posts are very much appreciated.

Take care.

By morning132
Posted October 15, 2008 at 1:33 pm
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Tom-WI,

Thanks so much for your input. We had not thought about accupuncture. I will make the suggestion to her. I haven't heard of the TENS stimulators, but will check it out.

I hope your wife is doing better now.

Thanks to all of you for your support and prayers.

By KathyS
Posted October 15, 2008 at 9:51 pm
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I tried Boniva at the doc's request which is in the bisphosphate family... I had very similar symptoms as what your sister has. I refer to that weekend as the "lost weekend" with the bones aching severe vomiting and nausea.. my bones felt like they were broken... lucky enough for me it passed after 2 weeks... but I had one monthly dose. I have no intention of ever going back on it. They ran bloodwork the following Monday after and I had a score which showed an allergic reaction to the drug. I am so sorry to hear that she has to live with this type pain for so long. I have no words of wisdom except to say it took much more then asprin to relieve my pain.. I took Ultricet.

By morning132
Posted October 15, 2008 at 11:44 pm
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Kathys: Thanks so much for your post. Sorry you had to endure the aching, vomitingi and nausea! Oh my gosh, that must have been terrible. At least my sister doesn't have multiple issues all at one time. I am very happy to hear that your symptoms passed after 2 weeks. It really gives some hope to my sister. While this dosage was very strong, perhaps in time the pain will pass. I know nothing about pain meds, but I believe she stated a med called Tramadol sometimes seems to help. I know that she is taking hydrocodene (spelling?) right now and it is helping some. I just so hope that this pain will go away. And, I want everyone to realize that the rare symptoms listed for Reclast are very serious and that unless you have very major bone density issues, you should really think about whether or not you want to risk the very serious side effects of Reclast.
Again, I don't know if exercise is the answer, but as long as I can run, I'll be running.
I just ask that all of you say your prayers for my twin and if you have suggestions, please post.

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