Angry,Hurt & Depleted

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broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 11/17/2008 9:15 PM (GMT -7)   
I'll try to give the reader's digest version of this vent.
 
I need to have oral surgery to remove my bottom teeth.  Went for the surgeon consult today. I had put off the surgery last year due to a severe flare and high prolonged doses of prednisone.  Friday I began having oral pain which turned into cellulitis in my face and landed me in the er for a drip of strong antibiotics.  They wanted to admit me, however, my white count was fine (yippee) so I requested a change of oral antibiotics and to go home.  Meanwhile last year about 9-12 months ago my primary put me on Boniva for the bone loss caused from all the steriods.  Later in the year the Rheumy changed the Boniva to Actenol (same class of biophosphate drugs).  On Sept. 24th of this year I was given a Reclast infusion (again same class of biophosphate) only this is supposed to last for a year.  As I was receiving this infusion (IV in arm) I was handed some drug company literature on the Reclast that stated "tell your doctor if you have dental work scheduled within 4 weeks of the infusion".  Okay, no dental work was scheduled at that time.  Today, the oral surgeon informs me that ANYONE receiving ANY of the biophosphate drugs should be counseled to have all dental procedures performed PRIOR TO starting this class of drugs.  This class of drug is residual in your system in ongoing therapy.  In other words the "one" infusion I received will literally be in my system for ten years....not even considering the oral doses I took at the beginning of this therapy.  Having said all this he then tells me that if I extract the teeth that desperately NEED to come out that being on these drugs can cause me to develop necrosis of the jaw in which the jaw bone dies and the only recourse you have is to receive an implanted steel jaw in the place of the dead bone.  Even then, their is no guarantee this is going to work.  Now, if the teeth stay in I will have to be on antibiotics for the rest of my life.  We all know what this will do to the crohn's not to mention the likelyhood that I'll develop a resistance to antibiotics.  So all of this came about because of lack of patient education yet AGAIN!  What really is the icing on the cake is I paid this guy a 75.00 consult fee for a surgery that is going to cost me 2,300.00 not including a lower denture as I sat there and got chatised for the entire situation!!!!!!!!!!!!  What a *&^%$#@ JERK!  Yeah, I could go for a second opinion but the situation isn't going to change and he "can't look into his crystal ball and tell me if my jaw bone will die", end quote.  I balled all the way home, on my husband's shoulder when he came home and probably won't sleep a wink tonight between all the oral, ars, fibro pain and the antibiotics eating my stomach alive.  Taking all suggestions to this situation as I need the distraction before I start balling again! mad

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/17/2008 9:24 PM (GMT -7)   
OH NO!!! ((((((((((((((( Broomhilda ))))))))))))))

Oh . . . I am SO sorry!! Go ahead and cry. . . I would be crying for a week. AHHHHHHHH!!!

I'm thinking maybe you should change the title of your topic . . . "Considering Actenol . . . Read this!" This should also be added to the post on meds.

I do wonder if the second opinion would be a bit less gloomy. Some of the actions of these doctors are motivated by fear of lawsuits . . . they act defensively and try to limit their exposure to potential law suits.

Sending you a hot cup of tea!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/17/2008 9:33 PM (GMT -7)   
Broom, I can only give as much sympathy as possible.... I'm sick and tired of having drugs pushed onto us, and the whole truth withheld.

Just recently with all my new DX's, I really am beginning to question the real motive behind some of these drugs being given. I mean like
you for instance, you weren't given the full facts. Why, because you may have thought harder about stuff...

I know some people benefit greatly from certain meds. BUT it seems, more and more we're hearing about the problems they cause.

Anyway I digress, I really hope that you can successfully have your oral surgery, that you so obviously need, and it doesn't open up another
can of worms for you...

Gentle hugs to you my friend... LOL
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/17/2008 9:57 PM (GMT -7)   
Oh, Broomhilda. I've nothing to say, just giving you a huge hug and saying that I'm so, so sorry.

I.
Co-Moderator Crohn's Forum.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/17/2008 10:00 PM (GMT -7)   
I'd go get a second opinion for a couple of reasons. I had an impacted wisdom tooth that needed to be surgically removed. It was laying sideways and seriously embedded in the jaw bone. The surgeon said I would need to be sedated by IV due to the horribleness of the surgery. He also wanted over $1000 (which I didn't have). about 3 years later (when the tooth had to be removed before it crushed the root of the tooth in front of it), I saw a different surgeon. No mention of sedation or other horrors. He did bring up the issue of Actonel/Fosamax, but I don't remember it being as dire as your doctor put it. His main concern was that I could end up with nerve damage. Oh, and the charge was $180...a far cry from $1000. I was awake during surgery, and it wasn't bad at all. The pain while I recovered was God awful, and it took some time, but my jawbone healed fine. It's possible your doctor is just a real jerk trying to make a mountain out of a molehill.

And one other story...a couple months ago I had some soft tissue surgery done in my mouth (a big flap of tissue hung over the top of a molar that didn't grow out right). The surgeon (a different guy yet) was insistent that it would not be successful and that I was wasting my money. Tired of having the tissue always infected, I had it removed anyway. So far, so good, and I no longer have pain in that tooth.

So consider seeing someone new, and remember that doctors tend to dwell on the worse possible outcome. Good luck!

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 11/18/2008 3:06 AM (GMT -7)   
ah heck broomy! i would get another opinion for sure... these meds are so prevelent now that if this was truly a big problem we would have heard of it by now.. i mean all the old people taking the drugs for bone problems are the primary source of dental surgeries and exstractions.. it would have been in AARP or on oprah... sure the warning is there for 4 weeks, ok well your past 4 weeks.. maybe this jerkwad was trying to get you to move on to another guy so he would not have to do it? did he mention maybe getting a bone transplant? instead of metal? etc.. what im saying is he sounds like an alarmist and did not give you the whole story or all the info..
randynoguts 



     http://www.geocities.com/randynogutsweb/


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/18/2008 5:32 AM (GMT -7)   
Hi Boom I did some reading up I goggled reclast and dental work .I think you need to read up more on it .Do you have exposed bone now?From what I read it said that it can improve if tretment is stopped and it is mostly cancer patients that have alot of problems. Hope this at least helps some. Be saying a little prayer for you. I will do some further reading. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/18/2008 5:50 AM (GMT -7)   
Thanks to all for your replies..I count on you so much. I am still in tears this morning and I can't quite figure out why I let this guy railroad me the way he did. Not that I'm generally combative but I have enough self respect that I normally would have quite an array of highly effective non-offensive approaches to situations like this. Let's just call it a "savvy tongue"....why else would my nickname be broomhilda! I guess with all that's going on he caught me with my guard down. Given the situation again I would have made the choice to go on the biophospates anyway. There is a "risk" of the jaw dying. Yeah, I think this guy was an alarmist too. And Well gee, there is a greater risk of me being cripple in my lifetime considering it would be naive of me to think I'll never be on prolonged high doses of steriods again! I may seek a second opinion but today I'm still too emotional to make a rational decision for myself or "play doctor" as he calls it.
The majority of this situation was caused by an impacted wisdom teeth on both sides of my mouth. The question remains why I was never told after all my dental xrays that the side that is not bothering me right now was ever impacted in the first place! Sigh! Do you think it would be wise to search my insurance online for another oral surgeon that is in my PPO? I'm afraid to contact my insurance company for fear of opening yet another can of worms. Should I talk with my primary about this? He will be consulted on the surgery. I truly am not upset with him as most would be. I feel he gave me the best option at the time and was probably unaware that I should have had all dental work done as well. Yes, it is his job to stay informed but I don't feel he felt that there was such an enormous risk. And as for all the old timers out there on these drugs...I'd love to hear from you! I should sue the *&^%$ for duress and stress he caused me...I'm sure accompanied by the IV antibiotics I'm headed for another major flare anyway! Hope everyone here has a better day...I'm allowing myself this wallering of self pity today but tomorrow I'm kickin' this disease in it's.... well you know!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/18/2008 6:27 AM (GMT -7)   
Hi Broom you need to take care of this cellulitis and please look after yourself if you get any worse let them admit you. I would also look to see if there is insurance to caver the side effects of the drug I did a quick read awhile ago and read something about 800 dollars. First take care of the cellulitis. Perhaps you should have let them admit you but that's just my opinion here. lots of love gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/18/2008 6:31 AM (GMT -7)   
(((((((((((((((Broomhilda))))))))))))))))
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/18/2008 6:51 AM (GMT -7)   
Vent away Broomhilda, thats what we are here for. I think you should get a second opinion. I agree with Randy, this guy did sounded like an alarmist. Hope you find some answers soon.

Hugs,
Gail *Nanners*
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/18/2008 7:54 AM (GMT -7)   
The only reason I didn't get admitted was because I had only been on oral antibiotic for 24 hours prior to the drip and it usually takes 48hr. to respond to oral meds and my white count was fine (again yippee). The white count hasn't been this good in 2 years! Yeah, I do plan on reading up more on the Reclast online, just haven't had time to do it yet. Also, I see my Gastro on Thursday anyway and I'm sure by then she will have been consulted as well. It really PO's me that this guy is trying to paint me as a non-compliant patient because I decided it was in my best interest not to have surgery last year. At least the cellulitis continues to improve. I know it was the Humira and Imuran that made me slow to respond in the first place. The whole thing started about 3:00 last Friday and I had to take my Humira injection Friday night because I skipped it the prior weekend due to strep throat. It just seems everything is turning into this massive drama right now when it really doesn't have to be this way.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/18/2008 8:08 AM (GMT -7)   
Hi Glad the cellulitis is responding was it started do you think from the throat infection? Sometimes it's hard at times not to be upset Broom I find just the little things sometimes set me into a worry zone and you have had to cope with so much. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/18/2008 12:09 PM (GMT -7)   
I wondered if it was from the throat infection or even the Reclast infusion itself. Maybe even a combination of all of it together. Too much on the plate and yes, it was the fact that I have to withhold fluid for 2 hours after an antibiotic mouthwash that the jerk Rx'd me 3 times a day. In perspective that is no fluid for 6 of the 24 hours. I walk around with a water in hand ALWAYS. All I could think at that point was; oh, just let me start running off and get dehydrated too! That was the straw that broke me as he asked me in my sobbing state if "I had any questions" and promptly walked out of the room to escape me. Coward!

All you guys are soooo very sweet for letting me get this off my chest because I know each of you have been there. It is such a special bond here and I just don't want to ever be without you all. XOXOXOX
Off to do some reading on the Reclast.....
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/18/2008 12:15 PM (GMT -7)   
This might open a whole new can of worms, but, could you call the pharmaceutical company and speak to one of their customer service reps. I had a question about a problem I was having a few years ago when I had to stop taking a drug suddenly and some strange symptoms started all within a week. I wasn't sure if the two could be related. I wasn't getting a clear answer from my doctor. Eventually I called to the drug company. Turned out not to be related, but they were much more knowledgeable and helpful. The only problem was that I was then on record as having a potential side effect and they wanted paperwork filled out, since it was an "off label" drug. Since you seem to be responding to the antibiotic and you have an appointment coming up, maybe you will get some resolution, but if not, this could be a back up plan.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/18/2008 2:22 PM (GMT -7)   
Zanne- I had considered that as well. I have done some reading online this afternoon and here is what I've found so far;

In a FDA Study I of Reclast infusion & Jaw Necrosis: Appx. 7700 patients, one case of OJN was reported in the group taking Reclast and one case reported in the placebo group. Hence 2 to 7700 ratio.

In a FDA Study II of Reclast Infusion & Jaw Necrosis: No cases reported in either group.

10,000 - 20,000 cases are reported annually in the US with most being the result of jaw fracture or dislocation. (My oral surgeon must not be to confident in his ability to remove teeth without causing further damage even though this is always a risk to be considered)

Jaw Necrosis was found to be more prevalent in oncology patients.

The Fosamax (biophosphate drug group) reported 125 adverse cases directly related to there therapy.

Jaw Necrosis is more prevalent in those patients receiving infusions vs. the oral administration therapy.

So my conclusion of this? This is a RARE occurance and I stand as much chance breaking my jaw in a car wreck or someone breaking my jaw over my over zealous mouth! Geez...talk about an over reaction on the oral surgeon's part! Granted if it does happen and he can't stop it from progressing I'll eventually be disfigured and unable to chew solid food. Hmmmm, seems I'll have to break out some of my plastic molds to make myself a face prothesis and learn to suck through a straw. At least I'll still be able to walk around the house and wait on myself instead of being crippled and wow...no solid food...that's suppose to put the fear of God in a Crohnnie! And just think of the incredibly cool halloween costume I'll have! The surgery and/or antibiotic therapy is all up to the "team" now so I guess it's a wait and see. Heaven forbid "I" make a medical decision for myself! Will post the outcome of my Gastro visit on Thursday should anyone want to follow this and maybe I'll be in a better mood by then...I'm pulling out my spell book now to see how I can hex this guy anyway! Love to all-Gayle
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/18/2008 4:41 PM (GMT -7)   
xo Gayle glad you are getting some facts dug up here and lets hope your hex works. Take care of yourself as we all love you. How's the hubby doing? Hope your GI has some insight as well on how things should progress ..in the meantime get some rest ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/19/2008 8:17 AM (GMT -7)   
Hi Gayle how's it going today. Was wandering what the problem with your teeth is as I did more reading? You mean to tell me your Dr. didn't tell you before your infusion about not being able to have surgery for a year after. Wholly tamolely.. What did they say about people with resection and aborbency problems before you were put on that drug? Something don't sound right there. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 11/19/2008 11:10 AM (GMT -7)   
(((((((((BroomHilda))))))))) I find that bad things always come in threes, so now you have had your three and its time for some good stuff to happen. I would get another opinion and let this OS go straight to H---. Randy's right, if us old folks cant have dental work because of bone loss drugs we would all be up crap creek. Hope you find another OS with a better chair side manner. That one is a jerk. Next time pick up the dental drill and tell him ," here , go drill yourself "...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/19/2008 7:15 PM (GMT -7)   
Hey Sniper...I knew I could count on you to bring me out of my funk. There were several instruments in his exam room that would fit perfectly in his orafix....no hex required!

Gail- The first visit last year with the oral surgeon he was aware I had started Boniva and consulted with my primary. Apparently, it was the Reclast "infusion" that sent him over the edge...which by the way is the same drug as Actenol just in IV form. Yes, person(s) missing the last of their small intestines carry additional risks as well. My Primary did tell me of the risk of jaw necrosis at the time he started me on the Boniva...hmmmm, let's way the benefits and risks here...cripple or disfigured? However, I was never counseled about having all dental procedures being completed prior to beginning the Boniva. Not even from the godly oral surgeon himself. I had "assummed" he was consulting my primary about the crohns not jaw necrosis.

On the brighter side today, if I can not have the surgery I have found an ongoing clinical study in the western part of our state at a dental school that has a study open that I would fit into should I have to keep the teeth in my mouth. At the very least I can get free dental work with the same treatment for the remaining teeth and gums that would be required. It would mean a 5 hour drive for me probably several times a week/month until I get the current "fires in my mouth' put out and would certainly help with my overall health in the long run. One would hope that I could remain antibiotic free if I do this but that may be reaching for the stars.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/20/2008 11:00 AM (GMT -7)   
Hi Oh that sounds better get after them .Thank heavens there is a brighter side to this and it might be a better approach. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/20/2008 1:53 PM (GMT -7)   
I was going to ask you why the teeth can't be "fixed" instead of pulled - I'm glad you are finding some options broom!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

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