Where to Begin?

Well, it seems like it never rains, but it pours is never so true when it comes to the side effects of Reclast. You don't ever get done with one aspect of the reactions to them and then you have, one...oh no, I'm mistaken, there are two...guess again, there are three, don't look twice, because it might just be four new things cropping up that you have to take notice of. And they aren't just little things either!

And you are scratching your heads and going, what in the world is thisw crazy lady talking about? Well, asmost of you know, my story of Reclast reactions has been long and exasperating. I thought I had pneumonia only three times that I was hospitalized for three episodes of pneumonia and one of the flu within a six months time frame. Well, in getting ready for my speech, I went through all of my medical records and found that I have had pneumonia four times instead of three times that I had to be hospitalized for. REDICULOUS! I guess it was a good thing that I had to do that though because I at least have my facts straight.

And I don't think I have updated you all on my teeth issue since I got back from the University of Iowa's Dental Department. With everything with getting ready for my speech and everything, I sort of forgot to let you know what was happening there. When I went to get the "pieces" pulled of the one tooth that the dentist in Waterloo had left in my mouth, it turned out it was way more complicated than that. IMAGINE THAT! What happened was that it turned out that he never pulled the roots of the tooth out so it took over an hour to get the tooth out because the roots were clear down to the jaw line. The dentist at the U of IA was very thorough. He made sure by going back to the x-rays that he had all the pieces pulled before he closed with about six stitches. It was very painful, but at least I knew the job was done when he finished. But he echoed the other dentist's opinion that I couldn't have any of my other teeth pulled for fear of the high risk of losing all the rest of my teeth and having bare jaw bone being exposed. Even then,the jaw bone at the back of my jaw is becoming exposed a little, which he said it could happen after the dental surgery. He said that is why they won't touch putting in dentures for at least two months or more. I go in October to have a consult to see if dentures are even an option.

Next, here is where the other shoe is falling. I'll start with the minor item of them all. Lately I have been sitting at the computer and all of a sudden my right thumb will start to jerk uncontrollably. Sometimes it will be just for a few minutes, and other times, it will be for most of the day, depending on if I have used my had quite a bit. What I discovered is that I have a bone spur on the other side of my wrist and when I put pressure on it, it causes the exact same thing to happen -- my thumb to jerk. So it looks like this wrist is going to need surgery on it as well. I'm trying to hold off as long as I can because my left wrist hasn't healed from the surgery that I had on it in July.

Next, I have been waking up with severe pain in my right leg that is right below my hip and radiates down to my groin. When I wake up, it feels like if I move, that my leg might break. So the other day (Friday to be exact), I got enough nerve to look up atypical femur fractures and unfortunately the photo of it scared me to death. The location of where the fractures occur is exactly where my pain is located at. It scared me so much that I ended up making an appointment with my doctor for bright and early Monday morning. I could just see it -- get out to Maryland and have my leg break! That would be horrible. So, I guess it's better to be safe than sorry. But, no matter what, I'll have them patch me or whatever. It'll have to be pretty darned drastic to keep me from going to Maryland. After all, everything is paid for. I couldn't not go now.

Next, I've been having issues with my spine as well. I have two areas in specific where I get about walnut-sized lumps in it, especially when we have a change in the barimetric pressure. On those days, I can't even hardly walk at all. Other days, I can barely handle sitting for real long periods of time due to the spurs. I need to have this looked into as well. Getting a doctor to look into it with more than an x-ray is almost impossible. And an x-ray doesn't show what needs to be done. It's like fighting City Hall.

Well, thanks for listening.

CubbieFan2308

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32 replies. Join the discussion

CubbieFan2308,

Well, it looks like there is absolutely no telling what will be next when it comes to the aftermath of this drug, RECLAST! My hope is that you don't already have a small fracture in that hip. I've read that the pain from fracture is exactly what you're describing and I hope this isn't the case but please be very careful when turning or even just walking. I'm concerned about that pain in your hip and groin area.

This is just so terribly wrong!!! So many people suffering from the aftermath of these Bisphosphonate drugs on the market. The drugs are supposedly helping build strong bones and they are creating havoc in so many lives that it's impossible for me to understand the reasoning behind pushing these drugs onto an unsuspecting public. All the drug companies appear to be doing is gathering more and more information about the bad side effects (on sites such as this) and then they cover their behinds by adding whatever seems to be the 'side effect of the day' on to their 'warning's'! I know from personal eperience that the doctor's who are treating those of us who are having these severe, life altering side effects, aren't aware that they are from the bisphosphonate drugs because I always get a blank stare or a suspicious smile whenever I attempt to explain that all the symptoms I'm experiencing now, and for the past 2 1/2 years started 12 days after the infusion of Reclast. I'm getting pretty weary now trying to get any of these physicians to understand that my problems are not from 'old age' or family history, etc. For whatever reason, it appears that the physicians in my area anyway don't care to listen or even consider that Reclast could be creating some or all of the problems people are visiting their physicians for. Many of the recipients of Reclast also aren't quite sure if the sudden pain in their legs or back, etc. is from the infusion they had months before until they come to this site or site's similar and begin to talk about their symptoms.. It appears it's going to take a very long time to convince physicians to listen to the 'possibility' that the sudden onset of symptoms is from the infusion or ingestion of any of these so called "bone strengthening" drugs.

I know you have been through hell since your infusion as have so many others on this site alone and I hope one day to at least see where the powers that be are listening to us because these side effects are real! They can come a few days post infusion or they can come months after, and continue for ...only God knows how long, but they are very real, life changing symptoms! Hopefully, your post will help even more people to take the time to do their research before they're talked into getting the infusion or ingesting these caustic drugs! I wasn't given an alternative treatment choice to the drug Reclast. Since being a member of this site I've learned that there are natural ways we can utilize, if we choose, to help us with bone strength. It's a shame that it appears most doctor's are prescribing these drugs as a first line of defense, even with patients who are in Osteopenia as I later learned I was.

I hope your latest symptom with your hip pain isn't found to be from a fracture. My prayers are with you as you know. Hopefully, one day, you'll be able to know that things are settling down as far as your health issues since Reclast. I long for that day Cubbiefan.

Mariah41

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Mariah41:

Thank you for one of your "Dear Mariah" letters! I needed one of those today! It was definitely comforting! I'm hoping that it is not a fracture, but I'm trying to be a grown-up about it and go in with an open mind. It definitely needs to be looked at as it is very painful and each day it seems to get more so. I just don't want this to ruin my trip. But at least I have two weeks to go, so if something needs to be done, I bought flight insurance just in case something unforseen did happen (it was only $17), but hopefully I won't have`to use it. For now, we'll just focus on the positive side, until I'm made to do anything else, and hope for the best. You are really right in that for the doctors, they don't really want to tie anything to the Reclast. All they care about is the bottom line. I'll find out Monday whether my new doctor is one of those soldiers, or if he breaks free from the pack. We'll see. Thanks for putting in your two cents worth on this topic. I really appreciate it!

Sincerely,

CubbieFan2308

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Well, Cubbie. If it's not cockroaches, it's p--ants. Bless your heart.

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Millie123:

I couldn't have said it any better! Thanks!

CubbieFan2308

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The groin pain you describe is exactly what I felt when my hip crumbled due to osteoporosis. I just did the reclast and everyone is right no DR really wants to listen.I have new pain I never had before .I have wrist pain,ankle pain , the joints in my fingers hurt till I can no longer open jars and bottles , my back pain is much worse and I also have a knee that needs replaced and unfortunately it is also worse . Good luck everyone .

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oceantrails:

Wow, that is scary. My gut reacton and my heart are going two different ways. I want so bad for this all to be a figment of my imagination, but the more that this is out there, the more that it seems real. I sure hope I am wrong, but each day the pain seems to get more intense. I just hope it holds out until I get back from Maryland....

Thanks for your note.

Sincerely,

CubbieFan2308

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Well I have so many health problems it would take forever to list. I have all the ones mentioned by you Cubie. I also have knots on my spine big debilitating ones.
I have also be suffering with Glandular Problems behind my jaws.
I have been passing out for no obvisous reason and hitting the floor very hard in which I am dealing with injury from that as well.
I spend most every day in my bedroom since Reclast on October of 2010. Once again I am about to start some more physical therapy for my back.
My heart suffered from the treatment as well. I am aslo Diabetic Dependent after reclast and was never a diabetic before.
Not to mention the permanent damage to my leg from the ruptures tendons and torn muscles.
My Dr. was so frustrated the last time I was in his office. He has been calling me his problem patient for a while now.
My most recent puzzlement. My ribs pop and crackle and gurgle like water slushing around in them. When they pop it hurts so bad. They often feel like they are getting caught on each other when I move around fast. If I cough it sounds like an accordian from the popping. I try to discuss this with the dr's but they always change the subject or tell me that its probably RA inflamation.
My family has been so impacted by Reclast. My husband is so tired of hearing me moan and groan all day an night. He says he is not but I can tell, I am not stupid. It seems to be making him so depressed. My 16 year old is very angry at me all the time. I feel he is angry about my illnesses but he just doesnt know how to deal with it. I have been so discouraged about doing any thing about Reclast. The Dr's have told me I had multiple health problems before Reclast that could have been leading up to all this. The lawyers I have contacted told me in the state of Arkansas that you almost have to have a doctor backing you to win any case such as mine. WELL you all know how getting a doctor to say it is the Reclast is impossible. I have just accepted what has happend and wouldnt be surprised by anything that arises in the future. I am just thankful to see daylight the next morning, when I do get any sleep that is. Thank you guys for letting me vent. Sorry to be so negative but I have a hard time finding positive latley. I think positive abandoned me.

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Kathy71929:

Believe me, I understand your frustration! Before even taking Reclast, I was in a car accident where I was rear ended by a semi and was paralyzed down my arms due to a ruptured disc in my neck. I had to have neck surgery. My kids were teenagers at that time and they were very angry at that time because I had very severe headaches all the time and wasn't a very pleasant person to be around because I was always in pain back then. This was 15 years ago. Now my kids are 32, 30, and 29. They still put up with me always in the hospital and always sick, but now its for different reasons. They aren't so mad at me any more, but they still don't fully comprehend the reasons, even though they are now experiencing some of the bone issues that I have had ever since I was 18 years old. They call and ask whenever any of them encounter any medical issues, but whenever I go into the hospital, no matter how serious the issue, they never darken the door of the hospital. I'll probably be dead and 6 foot under before they would ever come and see me in there. And I understand it, in a way, but it still hurts.

Going beyond that, Kathy, I do understand the pain that you are in and how it impacts your family, but you have to take care of you. Do you have anyone that you can talk to or understands what you are going through? I sure hope so. If not, I am here and I'll be glad to be that person for you. It really sucks to keep on having issue upon issue come up, believe me, I know. I've not just had the Reclast issues that I've talked about here. I've had a bone issue called Stickler Syndrome that I deal with on a daily basis, which has caused me to have over 70 bone surgeries since 1977. Then couple in my other medical issues. But still we must keep going. And we can't let our doctors, who even though they have a medical degree, tell us what we know in our hearts, to be not true or true. We know our bodies because we have been in them for as long as we have been on them for as long as we have been on this earth and we know them better than anyone. Never will I let a doctor, whoever he or she may be, tell me what they think when I know otherwise in my heart of hearts. We know what Reclast has done to our bodies. That is a fact. We know what condition we were in before it entered our bodies and we know where we are at now. There is a big difference between the two. If a doctor can't see the difference between the documented tests and x-rays, cat-scans, MRI's, etc. and the results therefrom, and look at the condition we were in before our infusion date, then they don't deserve the degree they bear.

Believe me, I know it can get depressing if you let it. But if you can find one good thing in each day, no matter how small. It is well worth it to make your life worth living and make it to the next day. Thank you for responding to my journal. I know you are struggling. Let me know if I can help.

Sincerely,

CubbieFan2308

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Cubbie, If you suspect at all that you might have a femur fracture, please don't walk on it when it hurts. Do you have a wheelchair or motorized scooter? I have a history of many femur fractures and was told if I feel pain, do not walk on it. I have been on my scooter for the last three weeks or so, most of the time. I am finally using the walker now, very carefully. You have been through far too much, I just wish this nightmare would end. I am just about a week away from my 3 year anniversary of taking Reclast. The barometric pressure here, in Michigan, has changed and I could hardly move this morning.; I am sure that has an effect. I am not married, but I do have a wonderful, close family that is always there. I feel so strong, that Reclast symptoms come and go like the tide, but leaving more pain and destruction. My doctor said, when the pain is very bad, I absolutely have to take it easy. It is annoying to be down and out, so to speak, and it takes so long to get through the bad times. By that, I mean to get where I can actually enjoy life and maybe go out and do things. It has a cycle and I think I am just starting to come out of it. I also have neck problems, a herniated disc; and can't use the walker too much, only for short distances, because leaning on your arms will flare a herniated disc. I wish I could take away everyone's pain and suffering, but I will always be there and anyone on this board that needs a friend to vent to or commiserate with, I am always here. I also go to the doctor today, late this afternoon. Cubbie let me know wht the doctor says. I wish you all the luck in the world, my dear friend; you have certainly been through more than your share. Sending strength, courage and love your way. Lovetocrochet

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Lovetocrochet:

I do have a cane, walker, wheel chair, and motorised scooter, but I try not to use them if I can. Right now my mom is using 2 of my walkers, but if I got to the point that I couldn't get around without it, I'm sure dad would go out and get mom one and give me that one back. I will however use my cane to take the pressure off of it just to make sure that I'm safe.

About 10 years ago we were getting ready to move and I went to reach for something and something popped in my groin/pelvis area and all of a sudden I couldn't move. I was in excrutiating pain. I can't remember what the name of the little bone was in ther, but I fractured it. I was in the hospital for I believe it was 4 weeks time, between the regular hospital and the extended care. It took a long time to heal with that little bone. So every time I have that pain I have flashes of that fracture happening all over again, especially after reading about the atypical fractures of the femur and seeing that they occur right where my pain is.

Well, we will plan on talking later today. Why don't you call me when you get home from your doctor appointment? That way I'm not calling you too early.

Tlk to you later.

CubbieFan2308

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Well girls ,it dose seem this is a endless battle & frankly ,iam so sick & tired of being in pain I just don't know what to do...I may not have been in this state as long as most of you ,Feb,2011 was my Reclast infusion date..But non the less I've had it ... I now have actual lumpy spots in my shin bones witch are so tender you can't even rub them. We had house guest a few weeks ago& just the tiniest of prep.for them put me in bed for days ,&iam still there... It just hurts to much to walk,clean my home ,cook ,or do any of the basics. If I try ,I loose the next several days . My husband has been a real cham0ion for me ,but I know hr is tired of doing most of my chorus.iam also having breathing problems ,where did they come from ? My hair isn't falling like it was. ,but my fingernails are so thin they must peel away.iam also having some hellaious Indigestion & I already take protonics & have had 2 nission ties to my stomach,for acid reflex my hands & feet are starting fall asleep on me & I know it is from this poison. Last week o went to my detest because my d entures were giving me some problems & I come to f ind out my b one is shrinking way to far.,also there are areas where my nurve area is very close & becomong exposed ... What do ya do with that? So I just had my teeth relined. It's not cheap & this is the 3rd time this year...I've had a blister rash on my chest & mostly on my head since the first week post Reclast & its not going anywhere . The list just keeps growing . No one seems to have any answers ,or even temporary pain relief . Iam on heavy pain meds & see a pain specialist .it helps a tiney bit ,bit the underlying pain is just relentless & madning. Last week I had a detached retna. Was it due to the reclast ? Who knows ... But if this stuff dosent stop assaulting my body & my life ,I just dont know what to do . This is no way to live .... Sorry for you new problems cubby ,iam speechless . Give them hell in md.for all of us . I sent my letter to the other address,but haven't herd anything .hope she rec.it. if not I could email one to her . Along with copies of my ever accumulating medical bills. All from Reclast .my thoughts are with all ofyou who suffer ,along side of me .hugs to all.

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Thank you for being here and sharing your story. Just to know there are others who walk in these shoes makes me feel not so alone. Not that I want anyone to suffer like this. Life does go on for everyone else around me. I know that can't be helped in most ways. They have to work and they have to go to school and everyone else has their own life and their own problems. I have been seriously considering a Nursing Home and I am only 47 years old. I am trying to just find some good days and still hoping they will come at one point or another so that I can build up some strength back in this weak body.
Health care in Arkansas if you live an a small community is not good. I do travel to Little Rock now to see some specialist but no one communicates with the other so whats the use.
I wake up each Monday and decide how I will deal with my problems this week. Today I am trying to organize Home Health so that I qualify to get my physical therapy here at home. I don't drive any more due to the passing out and all the pain meds, insulin and nurotin I take.
I was wondering, How much calcium do you take? They have me on 2 tablets 4 times a day, which is 8 tablets of calcium citrate. Somewhere I read where you can take too much calcium for your own good. I do take vitamin D3 three times a day as well. Does anyone else take this much calcium?

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5trees:

I am so sorry that you are going through all this. I hope that some miracle comes along and takes away all your pain. I'm sorry that you are struggling with it so. Maybe they need to change up what they are giving you for pain. It sounds like what they are giving you is not effective. If your pain doctor is not willing to explore these options, maybe you need to see a different pain doctor. It might be worth a try! Hang in there kiddo. We'll give 'em heck for ya in Maryland!

Sincerely,

CubbieFan2308

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Kathy71929:

I understand your loneliness anour own, especiallyre out yd frustration in trying to balance everyone else's life and still trying to figu when you feel awful and don't see an end in sight. I'm glad that you are able to use the services of Home Health to get some physical therapy at home,especially since you cannot drive. That should help you out a bit and relieve a little stress, especially once they get going a bit and you get used to them and they get used to you. Are there other services that they provide that you can utilize that may be of help to you? If so, you may want to check those out too as they may be easier than going into a nursing home and may make your quality of life much better.

As far as the calcium goes, it seems like you are on an excessive amount of it. I take 2 500 mg.capsules of calcium 2 times a day. That's all. I have also heard that you can take too much calcium. You might want to ask on the open forum about the correct amount of calcium as this posting might not get the attention that you deserve. Sorry I can't answer better on that, but I can only answer from my frame of reference on that.

Well, write me back whenever you'd like. Send me a friend request and we can communicate whenever.

Sincerely,

CubbieFan2308

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Here's an update for everyone on my doctor's appointment today. I went and saw my doctor about my right leg and he thought it was just inflamation in my bursa sack in my hip area. He injected the sack with steroids, which I am not a fan of, and then sent me for an x-ray. I tried to tell him that if it was a fracture that it would not show up on an x-ray,but he would not listen. He didn't seem to think it would be a fracture. He stated that he worked in the ER and he's seen fractures....

Anyway, I wasn't real pleased with what he said, but what do you do. He gave me the shot and expected it to be an instant fix. I told him that I've never had a good result with steroids, but he didn't listen there either. Oh well. We tried. We'll see what happens. If it gets worse, we will check it out later again.

Thanks for all of you who offered advice. I will keep an eye on it and I will let you know what I find out from my x-ray.

Sincerely,

CubbieFan2308

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@Kathy71929,
I've just finished reading your post and wanted to respond to you because you've been through so very much. Your symptoms are familiar to those of us who have had the infusion of Reclast, including the symptom of 'Diabetes.' Some people have reported they were diagnosed with Diabetes after their Reclast infusion. I wasn't diagnosed as Diabetic but when I was in the hospital after my infusion, the nurse staff asked me several times if I am diabetic. I thought that was strange at the time but since I've been a member at this Inspire site, I've seen other people with this symptom after Reclast. The same thing with your heart suffering from the Reclast as well. I don't know if you were diagnosed with Atrial Fibrillation or not but this seems to be another symptom which has been reported as far back as 2008, one year prior to my own Reclast infusion.

You've had multiple health problems prior to the Reclast infusion and so,...wouldn't you think that a doctor who was truly interested in helping their patient figure out what may have taken place "since" the Reclast infusion to cause their patient to have so many horrible "new" symptoms would be looking into the possibility that all the new symptoms could possibly be triggered by the infusion of RECLAST?This,... is what makes me the most angry about the doctor's not listening to the complaints of their patients who come to them with these terrible symptoms post Reclast. I've had a doctor point out to me that I'm in my 60's and things like this happen to people sometimes in their '60's but Kathy71929, I never had the horrific symptoms I have now before I had the infusion of Reclast. My symptoms started 2 days short of 2 weeks after the infusion. They, (the doctor's) simply don't know what to do with us so they make it appear that we've had these symptoms all along and...what?

I don't know about you but I never had Atrial Fibrillation, Bone Spurs, sudden Myocardial Infarction, blood clots, excessive G.E.R.D., etc., etc., prior to Reclast and it seems to me someone ought to be studying the severe medical problem taking place with patients like yourself, myself, Cubbiefan, 5trees, LovetoCrochet, and many others just on this site alone who are presenting with all these strange, new symptoms post Reclast infusion. It only stands to reason that the Reclast had something to do with the "new" medical problems we're having now.

We're learning from one another here so don't lose heart Kathy71929. The people here are good, kind, understanding individuals who can help your along in this journey.

I've also had the same problems with my doctor's communicating with one another. If they are communicating, they aren't sharing their thoughts with me. It appears that doctor's in Michigan and Arkansas (at least) are seemingly baffled or just don't care to look any further into our case to see that perhaps Reclast should never be infused into people with certain medical conditions!! I don't know what those medical conditions would be, but it would appear to me that someone dropped the ball and sent this drug to market before it was fully tested on people who may have had pre-existing problems that hadn't presented themselves until the Reclast was infused and started a Domino effect in the system of the patient.

Sorry about this long, drawn out message. I apologize. Just wanted to tell you that you're not alone Kathy. Don't give up! Stay strong! You're going to be all right!! We are all going to be all right!

Blessings,
Mariah41

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Kathy I have been told to only take 500 milligrams at a time I take one tablet about every two hours now until I get in 2500 mg a day .The reason I was given was that the body cannot absorb more than 400 mg at a time and it needs two hours apart . I hope this helps . I am starting a new deal I have ordered calcium and protein shakes why you ask? well Protein Provided you don't have a problem that won't allow you to use additional protein is good for the muscles and healing . The calcium at the site is made for post gastric bypass patients so it has been formulated to be easily absorbed for gastric bypass and patients .I hope this helps someone . If interested the site is www.vitalady.com

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oops meant to say body only absorbs 500 milligrams at a time

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Mariah41: Thank you so much for sharing. The statement you made at the end is the one I love to hear. Everything is going to be ok. Sometimes we just need someone to tell us that its gonna be ok. I am so sorry for all your going through as well. After the Reclast I called my Rheumatologist to report my symptoms and fever. They made an appt for me to come in the next day. I did come in but I did not walk in as I couldnt walk for the next few weeks. My Doctor told me that he had consulted with his other practioners about my case and came to the following conclusion: Sepsis. He thinks I suffered from Sepsis and somehow survived it. lol what a joke. I was not born yesterday at all. I was so angry I just never went back to him after going to him all those years and trusting in him that he had my best interest at heart.
I now have a young woman Rheumatologist who does not believe the Reclast would affect me this long. She agrees it affected me that night but she believes its affects should be gone by now.
Lets all stick together and see what happens next on this hell ride. Thanks for your encouragement, much needed.

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Kathy71929,
There are lots of people here on this site who are on that ride with you with lots of support. Those of us who are suffering the side effects months and even years after the Reclast infusion know positively that these side effects started after the Reclast infusion and continue to trouble us to this day. Doctor's aren't listening yet but one day, they will when enough people are maimed or die after being infused. This is the main reason I continue to post on this site. I didn't do my research on these drugs before I agreed to have the infusion of Reclast. I trusted the doctor and believed his aggressive sales pitch. I'll continue to talk about these very real side effects and one day, hopefully, those skeptical doctor's will finally begin to believe their patients and hopefully the patients will not make the same mistake I made when I didn't do my research before agreeing to the life changing infusion of Reclast.

Hang in there Kathy. We're on this ride with you.
Blessings,
Mariah41

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