Tuesday, November 11, 2008

A Reclast Nightmare

Today is Veteran's Day...a day to honor and remember all veterans who have sacrificed and fought (and continue to fight) for our country's freedom.

It was exactly 90 years ago that a defeated Germany signed the armistice ending four years of the bloodiest war in human history--World War I. A day that changed history!

To all of the brave men and women serving in Iraq, Afghanistan and other parts of the globe, I salute you. May God continue to watch over you.

Do you realize how blessed we are to be living in the United States of America? For the first time in our nation's history, American's have elected an African American to serve as our 44th president.

Obama’s election is a giant victory in the long struggle against an earlier generations long legacy of exclusion and hate. Finally, it is apparent that all people are created equal!

On the healthfront, things are quite bleak at the moment. I went to the Infusion Center last Wednesday to receive Reclast. a once-a-year treatment for postmenopausal osteoporosis.

Reclast is a type of medicine called a bisphosphonate which works to increase bone density. Because it is an intravenous (IV) treatment, my docs thought it would be good for me since it would bypass the digestive system. However, no one knew that I would have such an adverse reaction.

The infusion nurse told me that the most common side effects are flu-like symptoms, fever, muscle or joint pain and headaches. So, I drank several glasses of water and took Tylenol. In addition, she said that I should drink Gatorade to replace the electrolytes that might get eliminated and cause muscle pain.

Of course I experienced ALL of the symptoms within a few hours, but no one could have prepared me for what was going to happen the next day. As I was laying in bed, my entire body started to tremble. Within minutes, both legs started to tingle and then went completely numb. Every few minutes I had a stabbing pain at the bottom of my left foot.

At the same time, I felt a strange sensation throughout my body. It is kind of hard to put into words. My hands started to spasm and lock shut. I could not open them.

As time went on, the my muscle pain intensified. I experienced the most incapacitationg bone, joint and muscle pain ever. My temperature started to spike and all I could do was cry.

It brought back upsetting memories of my life at the very beginning of my diagnosis. Did this new drug nullify everything and bring me out of remission? This just couldn't be happening to me.

The fever continued the rest of the week, into the weekend, and the pain and weakness progressed. I called my physician's emergency number and spoke with the doctor on-call. Unfortunately, he had no answers. He just suspected that something else was causing the issues...perhaps a virus.

Now, I know for certain that I do not have a cold or the flu. I have no chest congestion, coughing or sinus issues. I was fine until the Reclast infusion.

According to the Novartis website for professionals, my reaction is extremely rare. And get this, the symptoms can last for two weeks. TWO FREAKIN' WEEKS! Why didn't someone tell me??? WHY???

On Monday morning I put in a formal complaint with the FDA and also with the "Clinical Safety and Data Collection Team" at Novartis. I did speak to Dr. Rumore, as well, who assured me that there is no scientific evidence that the treatment will exacerbate my disease. That is my biggest fear at this point...that I am back to square one.

As of today, I am still running a fever but my pain has subsided to a degree. I have doubled up on my calcium in-take and will continue to drink Gatorade. If things don't improve in a few more days, I will call the doctor and he may have to hospitalize me and administer an IV of electrolytes.

I don't want to go anywhere near a hospital now...it is flu season. That would be a death sentence, in my opinion.

In the meantime, my echocardiogram the week before was normal and Dr. Rumore explained that my previous thoughts were on target about taking a statin for my high cholesterol. Because I have a muscle disease, it could be a potential problem. He suggested regular exercise (when I am back to myself) and continue the diet. The doc also mentioned drinking a glass of red wine each night. Now...that is an order I don't mind listening to!

Every day brings on yet another challenge. I am actually taking my time typing this blog, as it is difficult keeping my hands on the keyboard. But I needed to write about my experience so that others, contemplating this new treatment for osteoporosis, might reconsider their options.

I am trying to work on my doctoral dissertation. I have come so very far and refuse to stop now!

Until next time, please continue to keep me in your prayers, as I keep you in mine.

God bless.


Blogger Lovely's Blot said...

Hope you feel better soon. I also love the idea of a glass of red wine to lower cholesterol. In fact my friends and I drink it after our steak or cheese to balance out the effects!

5:31 PM  
Blogger Donnetta Lee said...

Bev: I am so upset to hear this for you. This reminds me of when I had my worst upset spring before last. I wrote you a gmail about it. The muscle spasms and pain along soles of feet. Had to use a cane to walk. I blamed much of it on the proton pump inhibitors. Now, sensitive to any darn thing they give me. Haven't even found an antibiotic that I can take. Oh, I'm sure if I were having a life threatening infection, I would have to tolerate it. But I sure hate to hear about this. You take care of yourself. Keep me updated. Donnetta

8:21 PM  
Anonymous SAF/FFF3 said...


Shame you don't know someone in the wine industry. Better get well if you want that golf trophy back. We will remember you nightly in our prayers

10:05 PM  
Blogger Jeff's Blog said...

Wow, and I thought I was the only one that had this adverse of a reaction. I had my first reclast infusion a few months ago and within 24-36 hours had spiked a fever of 103.6, severe chills, shaking, crying (and I'm a man), and such.

But not to worry, there's more bad news. I'm now experiencing some of the worst back pain I ever have, and I've never had back pain before so it must be from the reclast. It's my upper back area. And if I stretch, it's even worse the next day.

My doctor has never heard of someone having a severe reaction. I'm only 37 years old and found out I got it, apparently from taking Prilosec for about 10 years.

I'm now looking at getting physical therapy and maybe even pilates hoping that will help the pain.

Thankfully, I have my faith in God and pray that he restores my health. I'll pray for you too, Bev.

12:00 AM  
Blogger Liz said...

I had a Reclast infusion 113 days ago, I've just returned from my doctor; she does not know what to do for me. She and her nurse give me hugs, shake their heads and wish there was more they could do.
I have not been able to work, my labs, more specifically my ANA are positive for both RA and Lupus. My kidneys are not functioning up to par and my liver enzymes are elevated.
I am taking Vicodin for pain and am now on an anti-depressant. Novartis has had my info for 2 months, I have yet to hear from them.
I've seen 3 doctors; they all concur I'll have to wait this out. Since the infusion lasts 12 months it looks like I may have these symptoms that long.
I am better than I was but still get fevers and always have pain, sometimes moderate, other times severe.
I know my reaction and symptoms are rare (lucky me!)
Having a glass of red wine sounds better than taking an anti-depressant!
All the best to you.

2:32 PM  

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