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shaw31
Regular Member


Date Joined Mar 2007
Total Posts : 167
   Posted 12/21/2011 11:35 PM (GMT -6)   
I have not been here for a while so my immediate appologies to all of you.  Many of you know my case.  I have chronic back , hip and leg pain.  Have been in PM for 10 yrs now.  I live in FL.  Because I live here my meds have been changed so many times It makes my head spin.  Understand these changes have been through no fault of my own. 
 
Before the FL legislator started medling in PM patients and their doctors business I was on methadone and oxycodone 15 mg for b/t pain.  For me it was a godsend.  When these legislators decided methadone was bad I was taken off of that.  THey then said the oxycodone is bad because of the pill mills.  I go to a legitimate practice with insurance drug testing and the whole nine yards.  I am a model patient.  THE MAIN REASON I WAS ON THE OXYCODONE FOR B/T IS BECAUSE IT DID NOT HAVE ANY EFFECT ON MY LIVER AS MANY OTHER PRODUCTS DO. Now I did that in CAPS because i believe it is very important for what i will tell u. 
 
I was put on morphine IM release and opan IM release.  They did nothing.  THe doc puts me on percocet which I did not want to be on because of the liver issues.  But,  What the heck am I supposed to do. My doc said it was a very low dose and should not hurt me.  The main ingredient works very well for me.  I took these for about 3 months then my blood test came back with elevated liver enzymes.  Not crazy high but a bit up.  This scared me because I have never had elevated enzymes ever ever.  My doc says we need to take you off of the percs and go to vicoprofen which is 7.5 hydrocodone/200 ibuprofen.  I questioned my doc about the ibuprofen and would it do the same as the tylenol.  He said no it breaks down in the kidneys and I am at a small dose. 
 
Now when I get my meds filled the vicoprofen comes with a special insert which I believe is put in there to scare the crap out of any legitimate CP patient.  I say that because some folks are just plain addicts and they dont care what they put in their body as long as they get their rocks off.  I do care what goes in my body and am scared now but what the heck are my choices?  Many of the pharmacies do not even carry  oxycodone products without the apap with fear from the state or some addict shooting the place up to try and steel them. 
 
I was always told if you take these meds for long periods eliminate the apap or nsaids.  Now I am being told to take the meds with all the crap in it because the state does not want anyone taking the safer product because of something they cannot control.  I am so fed up and going to write someone.  I do not know who.  Pretty soon you are going to see lawyer commercials trying to get clients to sue the state because they were not given access to safer medication because of a few bad apples.
 
I am sorry but I really cant understand it.  So now I am on vicoprofen and I see all over this pamplet and on the news that ibuprofen causes heart attacts and strokes, raises blood pressure, kidney proplems and ulcers, lower red blood cells , liver issues.
 
I would really like to know if someone else is in the same boat as I am and how this issue can be brought up somehow.  I feel I just want to get off the b/t med because I am concerned about the condition of my body and my organs.  But I know that I need these medications to help with the quality of my life.  I love to play with my kids, ride my bike, go to a picnic and garden.  Without these meds I cant do many of these things.  With them I have a quality of life until the added med hurts my organs. The crazy thing is it can all be avioded by just not blaming it on the legitimate patient and dont just start eliminating the market of a certain medication in a certain area when it is needed.  Something needs to give or I will be living in pain because I dont want to poison my organs.
 
Anyway,  sorry again for such a long post but i needed to talk.  Also, I am going to really talk with my doc about my concerns and see what he says.  I will also ask that the administrator and head doc at the office listen in. I have a good relationship with them so they will listen.  Some of you might say just get them to give you what worked for you.  I have asked and they say their hands are tied and If they did give me the oxy ir script I probably would have to leave state to fill it cause no pharmacy in central florida will carry it which is absolutely crazy.
 
Do any of you know if apap is worse for you that ibuprofen or vice versa?  I know your not docs but any input would be appreciated.  I take 4 vicoprofen a day which would be 800  mg ibuprofen.
Thank you all so very much and any input would help ease my mind and possibly point me in the right direction for my next move if any. Again thank you for lending me your ears and I hope you all are living as pain free as possible.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 12/22/2011 5:07 AM (GMT -6)   
Hi Shaw,

I can understand you frustration. I've never understood reading what you guys write - WHY it's so difficult for you guys to get BT med products that aren't combined with paracetamol/apap. It's true that the two are meant to have a synergistic effect - that is, that the apap makes the oxycodone have a stronger effect than oxy alone. I take paracetamol and oxycodone separately if I have a really bad flare, but I think it should be the patient's choice.

Are there online pharmacies that can help? I'm not talking the dodgy ones who turn up when you google for information on a med, with offers of prescription-free drugs - here we have online pharmacies that you or your doctor can send your prescription to and they will fill it and send.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 12/22/2011 5:51 AM (GMT -6)   
First, I want to tell you how very sorry I am that you are having so many problems.

Second, I cannot answer the question about the meds because I take Ultracet as a part of my PM 4x day and have had no problems (yet).

Third, I live one state up and have had no problems with either the Dr or the pharmacy getting the oxycodone, soma, ultracet, xanax cr, and the other slew of meds I use. I mention this because I do not know how close you are to the state line and if you are able to go one state over to seek medical help. I would NEVER give anyone advice on who to see because that feels a little "off" when you are talking about meds this way. I have been seeing my PM for a very long time and have had some very good and some very bad appontments during this time. They have, however, listened to me where meds are concerned and worked with me for the most part. I do have injections (very limited) to allow for RFA as often as insurance will allow. I don't think many people would go through this procedure as bad as it hurts unless something were actually causing them pain. I also have a great deal of documentation to support my conditions and continue to seek medical care from a number of providers on a regular basis......each is provided a hard printed copy of my "med sheet" with documentation of my pain contract at the top in red. This seems to help them understand that I am legitimate in my need.

I sincerely hope you will find the help you need and I understand your frustration. I DO wish there were someone who would consider the CP patients before they just label us all junkies and say too bad! Perhaps (forgive me if I sound silly to you) someone one this site would be willing to share their story with a media outlet such as OWN. They do a lot of human interest stories and are watched by millions. She also has a big heart and a lot of political influence. I'm sure that the correct people would make a great show or series on CP and what it does to the human life. I, however, am not comfortable tackling this issue right now. I know some here are at the end of the rope (especially in FL) and it could be worth a chance.

All my best!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet, Vision Issues & much more.....

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 12/22/2011 6:21 AM (GMT -6)   
Dear shaw
I share your frustration over this whole painmeds fiasco. I think alot of us are grossly undertreated because of the fear of retribution on docs parts. It angers me that I have to take a urine test every time and ssome of them just look at you like you are something off the bottom of theur shoe. I see "patients" in the waiting room nodding off and scratching like a street junkie OR in obvious distress from withdrawal. I live in Mississippi and it is almost impossible to become a PM patient anymore. One retired and another was arrested and the rest do not take new patients.

That being daid, I have been on hydrocodone 10/500 4 per day for 6 years. I also take 800 mg ibuprofen coupla times a day. I had hep C when I was much younger so my liver has been compromised for years. I get blood work done 3x year and my liver functions are always really good. But That is ME!! Everyone else has a different metabolism and organs. I know one lady on Fibro who had to stop meds w/ tylenol b/c of a bleeding ulcer(I think) so it does happen.

We should be able to get the meds we need without gov't interference...I feel very strongly about that and agree we need to let our voice heard. Start by wrting your state representative and senator, write a letter to the editor, try to get others to do the same.

The DEA FDA and state gov't need to focus on teenage drug abuse and all the meth labs, illegal street drugs and not legitimate meds prescribed to lawful citizens by good doctors. Just like so many things in this country, people are sticking their noses in someone else's business and telling us how to live and die. Crazy!!

I wish you luck
Maggie
"We never realize how strong we are, until being strong is the only thing left"
Major Depressive Disorder, ptsd, fibromyalgia, chronic pain, l3/4, L4/5 gone, bursitis arthritis sciatica

cymbalta seroquel hydrocodone klonopin magnesium potassium

shaw31
Regular Member


Date Joined Mar 2007
Total Posts : 167
   Posted 12/22/2011 10:13 AM (GMT -6)   
Moderator, retiredmom and bayoub2 ... THANK YOU!  I really appreciate your comments and encouragement.  I am glad to see there are others out there thinking about this topic.  Many good points were made in your posts and I thank you again for that. 
 
I did fail to mention in my post that I have had many injections as well.  I just finished a series of three for leg pain.  My back and hip pain are still there and my doc said we will address the them maybe with injections but I want to wait a bit.  I never like to get to many injections in one year.  To date I think I have had close to 70 injections over a 10 year period. It maybe less than that but somewhere around there.  The injections do work but they do not kill the pain 100% (I wish they did).  THey take it to 30-50% relief.  The only problem is duration.  I only get good relief for a month or two.  Then day by day I can feel them wearing off.  I have had RFL, epidural, facet blocks, and SIs.  My issue is my pain has to be dealt with by giving two or sometimes three seperate series of injections because the injections as many of you know only cover one area of your body. The epidural for leg pain, facet for my hip, etc. 
 
I had really never thought of the online pharmacies.  Might be a good idea.  They may not send controlled meds though.  Oh well its worth trying. 
 
Thanks again to all of you and please continue to comment.  We as a community (CP patients) need to fix this.  We are no different from groups that have other health conditions such as high blood pressure or diabeties.  I believe we are being singled out and discriminated against especially here in FL.  Thanks again and please share your thoughts on this subject.  By the way, I realize that all of our bodies react differently to meds.  Some of you can take apap with no probs.  I was always that way. I just dont want to put to much in my body.  I know that the apap or nsaids help the combination they are with to work better but I believe if I need to add an apap or nsaid then let me and my doc make that decision and I can add them to the oxy ir as needed.  GOVT STAY OUT OF MY BUSINESS!

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 12/22/2011 10:59 AM (GMT -6)   
800 mg of ibuprofen a day is not that much, but I do understand your concerns.
As far as online pharmacies go, watch using those because they are illegal in many situations, especially for controlled substances. And there is not telling about the actual make up of the drugs they send. Quality control is not something that is overseen by our government when they are made in other countries.
As far as pharmacies not carrying plain oxycodone, I doubt that, although I do know that many pharmacies carry far less than they used to, due in large part to  robberies and hold ups for obtaining controlled medications by addicts.
However, if you approach your regular pharmacy and tell them that you will be needing this particular med, each month , in this dosage, I'm sure that they will order it for you....just as they do for someone who can not take a certain manufacturer's brand because of an allergy, etc....even in Florida.
The other option is to see if your insurance has a mail order pharmacy connected with your insurance. Many do, and if your doctor is willing, they may even be able to send three months of your oxycodone through the mail at a time....my insurance has that option to use the mail order service and obtain my meds three months at a time, if my physician is willing.......
Sandi

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 12/22/2011 1:18 PM (GMT -6)   
Hi, I am so sorry to hear of your troubles.  I have said over and over again that we need to get the word of cp patients out there so people know we exist.  I live in Maryland and I have sent letters to each legislator that I found from the Senators, Congress, Governor all the way down to the local county legislators who I have dealt with before.
 
I have said over and over we need to put our faces to our pain.  Many people when they here chronic pain patient, suddenly have a different view of who we are.  To many people we are nothing more than drug addicts looking for our next fix.  If this were so, it would be alot easier to get the meds we need, rather than go thru the unending tests, sometimes very painful tests.
 
I was particularly worried about Fla. as the media flew in and went undercover and opened up something that yes certainly has to be better regulated, but for the people that are suffering each day, every day, every hour, every minute, where is the media to tell our story.
 
I have held off going to local media in my area, as I am unsure how to go about it.  They want stories that show the horrible effects of narcotic meds, they seem to be uninterested in the truth concerning the people who suffer from cp each day, etc.  Stories like ours dont make for exciting reading, they would much rather keep alive the horror stories of overdosing teens who have gotten into there parents meds, those are the kinds of stories that make people read.
 
My heart goes out to you, I am not sure how to answer your question as I cannot take ibrofen or anything like it, it causes stomach problems for me and it makes it just not worth it.  I urge you to take some action with you political people in your state, I know of no other way to get people to listen to us.
 
Take care and good luck,
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 12/22/2011 2:26 PM (GMT -6)   
shaw31
I took vicoprofen  for several years, and my doctor was worried that I needed to many of them to control my pain, and it was not good to take that many with having Ulcertive Colitis, so he put me on Oxycontin. I thought that was a Godsend, as it relieved my pain without making me feel "dopey" like the hydrocodone did! I can appreciate your frustrations and concerns! You know I was and am thinking about moving to a warmer climate, and  I want to be near a military installation so I can use my retirement benefits, but because of all the problems everyone is having with getting their chronic pain treated, I have completely taken Florida off my list for consideration. If it wasn't for the weather, and the politics of the state of Illinois I would just about be tempted to stay here where I am!  I have a really top notch pain mangement doctor that does everything, and it is going to be hard to leave him. Anyway I really do understand the problems you are having, and hope that something can, and will be done soon to help relieve the problems your state seems to be having with prescribing pain meds, I just hope that it does not spread to the rest of the states first!
 
Good Luck to You!
 
White Beard 
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 12/22/2011 10:42 PM (GMT -6)   
I feel for you, what your going through, and i have been following through the year, is pointless. there is no way to make logical sense out of this and if you ponder on it smoke will shoot out of your ears. basically the two meds that work best for you: Methadone and Oxycodone IR, are the two they won't give you, and im sure many "not perfect" patients are getting them, i know because here in VA dealers drive down and go to the doctor and come here and fill the Rx's and sell them, which is one thing i hate. you should keep looking for a good MD because they are not risking there license treating you. you have to go with the flow in the meantime. do you think Opana ER or IR at a higher dose would be effective? i tried Opana IR when it came out and it did nothing, years later i found high doses of Opana are great, for me 30mg 4 times/day started to work. also i know people that are in bad shape who are Rx's 120mg Opana ER 3 times/day with breakthrough meds,(one or two). the other med people do not get a fair crack at sometimes is Dilaudid, a higher dose and/or the brand name may get you by, min. 8mg q6hrs, you could give Exalgo a shot but it's pricey. i have not met many Dilaudid at a good dose did help, side effects a more at high doses but you can treat them aggressively with good results. as a last resort,( but a very good med.), you can see if anyone stocks Levo-Dromoran or "levorphanol" or if it is still on backorder, more similar to the Methadone. one more thing is for breakthrough meds you can find a compounding Pharmacist to make you a Hydrocone product over 15mg which becomes schedule2, without APAP or Ibuprofen. your right about being in chronic pain you do not want to lean on liver toxic OTC's. you should check out Forest Tennant MD's website, under articles he has a self-authored handbook called;The Itractable Pain Patients Handbook for Survival, it is a good read. best of luck to you and merry Christmas

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 12/23/2011 10:03 AM (GMT -6)   
i thought i would mention that there is a extended release formulation of Levorphanol that has passed FDA trials and should be released soon. it is maybe closer to Methadone that most anything else but it has a bit shorter half-life. Levorphanol already is on the market called Levo-Dromoran but it has been back ordered for a long time.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA
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