Lilian’s adventures with the hideous drug known as “Reclast”.
In the early part of 2009 my least favorite Doctor insisted I take a bone density test. I agreed, since I was grasping at straws as to how to rectify my chronic pain and improve my ability to walk and stand. The nice Lady at the clinic asked to repeat the test, since she thought there was a problem with the equipment. Eventually, sometimes in May, my Dr. stated his concern for my bones and referred me to a Hematologist at the local cancer clinic. A little odd I thought, to have a Hematologist treat me for Osteoporosis….but OK, I agreed to do that in order to have a procedure “Reclast Infusion“.
I liked the Doctor and it appeared he was very knowledgeable in reference to the procedure and he cared about his patients. He told me my bones were in such bad shape and he added only about 2% of the world population had bones like mine and they more likely resided in 3rd world countries. I informed him that I had done my homework and looked up everything about Reclast on the Internet, since I was allergic to many medications. He thought I might look at the pro’s and con’s and make a decision.
One of the side affects involved elevated heart palpitation, it concerned me greatly, since I have issues with a heart valve. I arranged a visit with my cardiologist and after some examination we decided that my medicine would offset the increased heart palpitations. Next stop was the Gastrologist, since stomach issues were also listed as side affects. This Doctor has known me for 30 years and we had a frank conversation. He thought my deteriorating bones would kill me and he was confident he could assist me with my stomach problems, which might arise if it became necessary.
One of the major side affects is Jawbone problems. I wear dentures and was unable to be seen my a dentist, since I have no teeth.
During the time all of these preparations on my part took place the Hematologist discovered that my Calcium was way too low and my body had problems retaining Vitamin D. He ordered 100,000 mg of vitamin D a week. I was allergic to the dye in the vitamins, but decided to continue to take them, since there was no other way to administer the vitamins. A pretty miserable month followed and we decided to change the dosage and switch to another brand. I was still able to take care of myself, go shopping, go the clinic every two weeks for blood tests and continue to produce my weekly TV Show and finish the book I was working on, from my home.
By mid November it was decided that we now could attempt the procedure, I must have been the longest “IN PREPARENESS” patient in history. My last visit with the Doctor was rather odd and I got somewhat nervous about the whole thing. Just as I was ready to change my mind it came to light that one of my grand daughters and a nephew had similar bone issues, so I agreed to go ahead with the procedure so the young relatives, both in their 20’S would know what they were up against, in case a Reclast Infusion was suggested to them. I scheduled the procedure for December 2nd 2009.
The staff at the chemo therapy unit were extremely nice to me, while signing release papers I noticed that my kidney function had not been checked, so I requested the test and they did that. The results came back OK and the zoledronic acid was put into my bloodstream over a 30 minute period. I had time to reflect on how I had prepared for this, working ahead on my shows, my book was finished, the house was clean and I had prepared food for the next 6 days…I was ready.
The nurse instructed me to drink lots of water and take 2 pain pills as soon as I got home to lessen the discomfort which was about to happen to me and made an appointment for a blood test in 2 months.
Just as she predicted within a few hours I thought I had the swine flu.
Four days after the procedure I thought I should call the Dr, since I was deadly ill and realized this may not be normal. I got very cold, at which time my temperature was 102 degrees. I got very hot, at which time my temperature dropped to 94.2 degrees.
My personal physician was no longer available…. he went “NORTH” and I was unable to find a doctor to see me.
Within a week I had ADDED THE FOLLOWING SYMPTOMS:
Loss of use of both arms….. that comes on very suddenly and only lasts a few minutes…. about once or twice a day.
I had to learn how to handle hot objects to keep from getting burned and stay within reach of a counter or table to drop things on in a split second.
Sudden hypoglycemic attacks…. no warning
I have food located about every 10 feet, since I do not have time to reach the kitchen when this happens and would faint unless I eat something…..besides regular meals.
Swelling of hands and feet…
I removed all of my jewelry so it won’t have to be cut off my finger in an emergency.
A 3 millimeter surface cut bled for 4 hours…. frequent nose bleeds….
Loss of smell and taste….
I smelled a skunk once. I smelled Tobasco Sauce once, except it was not there. I can smell Orange peels, that seems to help a bit.
Gum and Jaw problems….
Upper and lower gums are always sore and bleed and my left jaw hurts constantly, it feels like a toothache inasmuch that the pain reaches all the way in my lower eye cavity.
My neck hurts constantly
Extreme dizziness…. without warning, even when sitting still…
I walk with a walker to keep from falling and removed objects from tables and counters, in case I need to grab something.
I am not sure if I am actually cross-eyed, it is very bad and scary, I get nauseated. It feels worse than VERTIGO. I try to lay flat when it is possible.
Charley Horse pains in various parts of the body…
I have no Idea how to deal with that as of yet.
I am unable to sleep, so I take many naps when I can.
I lay down throughout the day, any activity exhausts me. Cooking, getting dressed, hygiene and any other physical activity is very difficult.
Weakness in lower back….
Before the procedure I was able to stand 7-8 minutes before my back gave out on me. Now, I can stand 90 seconds before my back weakens and feels like it is unable to support my upper torso.
Stomach problems…. Heartburn
I saw my gastrologist, he gave me Prilosec and added Vitamin B to my medications, which helped me a little with my nervous system. He was unfamiliar with the rest of the side affects of Reclast and I was grateful he tried to help me. I have doctored myself with the rest.
In the meantime, it has been determined that Prilosec used over a long period of time promotes bone fractures. I have replaced Prilosec with Dan Active.
These symptoms never appear at the same time and in no particular order. Each time I manage to adjust to one thing, a new problem will arise and render me fairly immobile.
As soon as some of these symptoms started I attempted to seek medical help with my dilemma. My personal physician has not been replaced,,, to date…, a walk in clinic could not treat me and offered to refer me to an emergency room.
I called the cancer clinic, which administered the Reclast and was told there were no answers for me there. The medicine is approved by the FDA and according to the person at the clinic two 7-month tests had taken place, the outcome was unknown to them. I wanted to know why 7-month studies were conducted if the medicine remains in the system 12 months. I was told all participants were “OLD” , what are they saying? I am 62!
I was instructed to call the FDA and report my symptoms. If you have ever tried calling the FDA you will be right in guessing that did not work and I got nowhere.
I called the Pharmaceutical company and was advised to see the Doctor who ordered the infusion.
After two month of fighting I was able to get a Doctor’s appointment.
I insisted a written record of my symptoms along with the letter from Kathryn Grandfield be enclosed in my medical records. The Dr. was very thorough and ordered a full set of blood tests, urinary and ultra sound of the upper abdominal organs, kidney, liver, bladder, stomach and bile duct… I have no gall bladder. All tests came back normal and my association with the hematologist ended.
Just because my tests were normal, that did not end my dilemma. Nothing has changed in my condition. At the beginning of my 4th month after my infusion I was scheduled for my yearly check up with my Cardiologist. He also took a long look at my list of symptoms. He ordered a 24-hour heart monitor and a series of blood tests. After hearing about my ongoing symptoms, especially my “CROSS EYE PROBLEM” which now occurs almost daily without warning. He was also concerned about me loosing the use of my limbs, he was almost positive it was not connected to any of my heart problems. He suggested I should be seen by a Neurologist, since some of the symptoms sounded like MS.
The blood tests are back and it showed my thyroid function was low, an additional problem for me. Since I have multi allergies, IODINE is one of them and I do not respond well to Thyroid meds, that is a problem. All Doctors were aware I have Graves. The problem is there are so many side affects for Reclast I am sure it will take years to find a better solution.
A MRI followed, my brain looked very good my Neurologist of 30 years explained to me, no signs of MS or any other disturbances he could diagnose, to be on the safe side he also took a EEG.
I finally have a new permanent Physician, she is very thorough and listens.
A CT Scan of my jaw was taken, no conclusive results, without a capable dentist no-one seems to know what they are looking for.
All I know is, my jaw, way into the right sinus cavity hurts ALL the time, like a constant toothache.
I have treated myself with Camphor, Colodial Silver and Bamboo Silica, I am unable to use over the counter remedies due to my Novacaine allergies.
It also complicates my ability to eat and swells and bleeds at night.
My jaw problems have intensified, no-one seems to be able to know what to do, including a Dentist friend in Reno, NV. I had asked to look into the problem, I thought if he discovered what the problem was he could write a medical paper for a journal, except he thought it was too bizarre to subject himself to a research program without proper pay.
My children bought me an electric scooter, a blue AMIGO and I am grateful. Unfortunately my home is not wheelchair friendly and a whole new challenge has presented itself, a challenge I will learn to master. Rebuilding Thurston County built me a larger wheelchair ramp and I am grateful.
I can now, six months to the date, smell pickles, orange peels, lemons and freshly cut grass. Since I am unable to taste my food, I still eat by texture and memory.
I can taste ginger.
Six months to the day of my infusion I still deal with the same challenges of the side affects and now have also added occasional “NUMBNESS” of my face and mouth.
I have learned to brace/hang myself by my elbows or slide to the floor when my legs disappear. I am unable to regularly produce my TV show, and have to air re-runs.
My procedure was suggested by my… AT THAT TIME … Doctor, which I thought was familiar with my ailments.
Television ads by Pharmaceutical companies sound very good at times and they suggest for you to talk to your Physician about certain treatments.
They also suggest IF you have side affects to call your Doctor, EXCEPT Doctors rarely have an answer for you. Chances are they were not educated as to what to do for you. They are unable to identify the full extend of the side affects. It costs thousands of dollars to rule out new conditions and can easily render you immobile.
Especially when people taking many medications are unable to tell you what is wrong with them and are often ignored. I have known several people… friends and relatives.. which have lost their lives, because they were not as aware of their bodies as I am. I am still in a position to maneuver myself somewhat, was I a much older person, people would assume I was FAILING and going downhill.
There is a possibility I am the exception to the rule, in case I am not:
Please do not become a statistic!
This is the letter Kathryn Grandfield wrote when I asked her what she remembered about the days she supported me from a distance.
Lilian – to chronicle the experiences you have had since Reclast was administered to you in early December so you can accurately relay this information to your physician. Since you became very ill during this time, I am writing to give you my recollections of the experience you had by way of talking with you almost every day during this time, at least once a day and often more than once.
My memory is that the discomfort began later in the day after the drug was given to you at the clinic and that you began taking pain pills for the pain that day. The next day you were in increasing pain and had started having some muscle cramping. At this time you were still mobile and could get around fairly well, occasionally mentioning you thought you probably should be using the walker because of vertigo and dizziness. Within a few days you had sores in your mouth and had great difficulty eating food. Each day you seemed to be weaker and it was often difficult to understand your speech. Each day was worse than the day before and the symptoms seemed to escalate and also increase in number. At the time we talked about your kidney function. You were drinking a great deal of water and were not voiding very much. since you had been given information that the drug could cause kidney damage, you were concerned about your water intake. Things seemed to go from bad to worse right around the Christmas holidays. You were constantly either very cold and unable to get warm, or overly hot. I believe someone brought you a thermometer so you could monitor your temperature. At one point I remember you had just taken it and it was 102.6. I thought this was very high and asked you if you had thought of calling the doctor again. You said you had called the doctors office and the clinic where the drug had been administered and neither of them would help you in any way. You were worried about going to an emergency room on your own where they would not have access to your extensive medical history and might cause you harm without meaning to. In addition to dealing with the Reclast and the effects of having it in your system, you were also dealing with heart problems, problems with your neck which was hurting you so much you said you were unable to move your head. Your neck and diminished ability to breathe and swallow has been an ongoing problem for you for many years due to thyroid surgery and Graves disease, which have been a problem for some time. At this point I became very worried for your survival and kept urging you to call your doctor again. You seemed to be constantly dizzy and unable to stand at all, and sitting was difficult as well. You had completely lost your ability to taste and smell anything. Your arms were also going numb on you and you were unable to hold things sometimes. I remember several times you would drop things when we were talking. You were sometimes very disoriented and I could hear the sound of giving up in your voice. You never give up on anything but this seemed to be causing you so much pain and you could not get help. The vertigo continued. You continued to have instances where you described it feeling like you had no arms and hands because you could not move them or feel them. The muscle cramps were getting worse and seemed to affect you in many places at the same time…….legs, feet, abdomen. I forgot. Your digestive system seemed very upset during this time as well. You had constant burning. Your loss of taste and smell seemed to have decreased your desire to eat food. We often talked about how you had to eat to give your body enough nutrients to deal with the problems you were having. It seemed to me that there wasn’t any aspect of being a physical human being in you that wasn’t adversely affected by this drug. My outrage that knowing your medical history, none of the doctors would help you when you phoned them…..no referral to someone else if they didn’t want to treat you, and none of them would see you until your gastrologist agreed to see you about your digestive problem. I was worried you were going to sit in your home and just die because no one would run any kind of blood test to even try to get a picture of what had happened to your body. Perhaps the most frightening thing occurred this past week when you suddenly became what you described as cross eyed. You had trouble staying upright. You couldn’t see correctly. It lasted for about 10 minutes.
I am very glad you are at last going to be able to see the physician who administered this potentially damaging drug to you………how long ago has it been? Almost two months? I can’t remember accurately how many times you contacted his office for help. Two months with a drug of this calibre with absolutely no one monitoring your physical condition. I remain outraged and I urge you to do whatever you can to see that no one has to undergo an experience like this alone again. It seemed to me there had been a complete breakdown in the health care delivery system as far as you were concerned. With all the warnings you had been given by them no one had taken the time too hear what was happening to you,.which might have resulted in them being alerted to some of the conditions they had warned you about. But no one would take the time to even talk to you over the phone! What kind of medical people are they? I often wondered if they just thought you would die…..especially since the clinic nurse told you they had never encountered your problems by people taking this drug because the people were old. I remember we laughed because it sounded like she was saying everyone died and didn’t live long enough for them to get a picture of what the drug did to people. And now after this drug you cannot stand at all. So you are worse than you were to begin with.
Please let me know what the doctor says. Hopefully he will at least run some tests to detect kidney damage if it occurred, or liver damage or any of the other numerous problems that you were warned about before you took the drug. Do you suppose you were supposed to suffer the pain and debilitating effects of the drug AND self diagnose at the same time? Kind of sounds like it, don’t you think?
“Information is not knowledge.”