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Posted 7/15/2007 1:20 AM (GMT 0)
hey all,

figure i'd throw this out in the open.

ok...dilaudid i use now for pain @4mg; however 4mg doesn't do much for the joint pain.

so it takes about 8 or 12mg at one dose to "break" or get a handle on the pain.  this pain is in the joints in both knees, ankles, and legs.

prednisone is the only thing that really helps but i can not be constantly on pred all the time, i'm sorry...but i like my adrenal system thank you. i also feel that prednisone is far more dangerous than ANY med out there.

so i practically have to OD on tylenol, use up all the dilaudid {which stresses me out b/c i don't want to be stuck without any before i can get another RX}, i end up having to go back on pred (withdrawal from prednisone is BAD for me, it's terrible) & stupidly i take an nsaid or celebrex that doesn't work anyway (i just cross my fingers & hope it will) & they just upsets the CD issues.

 

what's methadone like? and is this medication a hassle to get RX'd? already been on morphine (avinza) in the past...failed...just ended up taking EVERYTHING else on top of it.

 

ayone think dilaudid injections would be better?

the joint pain gets to 9 & 10 on a 10 scale.

i understand that narcotics do nothing for inflammation...but hopefully remicade will eventually help the joint inflammation.  narcotics DO help w/ my joint & leg pain however.

 

at a loss at what to do next.

 

2 pain specialists denied seeing me:1 only does spinals [but he suggested the stuff i'm already on]....the other doesn't see medicaid patients (wtf?). my PCP handles my pain meds.

 

thanks for any info.

thank you

erin

Posted 7/15/2007 2:04 AM (GMT 0)
Erin,
was just wondering, what type of morphine did you take before? My friends' husband had horrible chronic pain, and they ended up putting him on morphine pump, it was the only thing that ever worked for him.Is that an option for you?
Didn't know if it would make a difference with that type of delivery. Can't believe a pain specialist would turn you away because of medicade...that's ridiculous!!
Take care,
Jody
Posted 7/15/2007 2:57 AM (GMT 0)
I am so sorry Erin that you are having such difficulty. One thing you do have is that you can get pain medications. My PCP nor my Rheumy will prescribe them because they say that prednisone will take the pain away. I am in the same boat as you I don't want anymore steroids. They will only go so far as ultram and this gives me breathing issues and headaches. Good Luck on your quest... hey did you ever take neurontin? Gabapentin? This seemed to help my mind think the pain away even though it was still there.... it might help in conjunction? Don't know all your health issues sorry.

Theresa
Posted 7/15/2007 10:30 AM (GMT 0)
Hi Erin, the Bear has something sensible to say here about methadone - well its from the mommy bear who is a drug and alcohol counsellor and has people who are prescribed methodone on a long term basis to act as a heroin sub. However, she has three pateints/clents whose  methadone use also acts as a painkiler but not in a formal sense. As I understand her explanation the meth acts on the same nerve sensors [my description] as heroin which as you know is diamorphine. What the momma bear says is that the methodone lasts much longer in its application 24-36 hours before itstarts to reach break down levels within the body, much longer than most if not all frequently used painkillers and as such doesn't need as frequent topping up. [I'm teaching you to suck eggs here] and for her people who often have multi-health issues, it does work.

HOWEVER.

Methadone is just as powerful a drug as heroin in terms of dependency for long term users and the wthdrawal can be as bad if not worse than the drug it is used to wean you [one] off. It is not nice stuff. There has also been a warning in the states about the increase in o/d's involving methadone even where it is prescribed. Mommy bear's word of caution is about its long term application. In drug treatment its supposed to be used in reduction therapy but addicts are often on maintenance doses and its those people that can develop dependency problems of their own. But it is used as a cancer treatment for pain control also so it may be worth looking into. As they say in the Woodstock movie 'it's your trip! Mommy bear says that any questions you have regaarding methadone she will do her best to answer within her field of competence [which is very high, I am led to believe by colleagues].

Other than that, to answer the query re POETS day. Friday is poets day - Psis Off Early Tomorrow's Saturday. It's all about finishing anytime after lunch and going home early. There are of course those who subscribe to that edict any day of the week starting wth breakfast!!!

I hope that you can work something out for your pain Erin, and all the rest of you. It's relatively easy for me I just have the bad bits replaced with ceramics but you.........I don't know how you all cope I really don't.

Laterz all

The Bear 

Posted 7/15/2007 3:14 PM (GMT 0)
Hey Erin.. have you talked to Jay-Z? What are his thoughts on all this? Can he recommend a pain specialist that takes medicaid for you? Hang in there and let us know how everything is going..
Posted 7/15/2007 10:23 PM (GMT 0)
Maybe Fentanyl. Have you seen a pain management specialist?

Mary
Posted 7/16/2007 1:39 AM (GMT 0)
Ok girl.. I did some looking.. here is a link that has all the pain management docs in NJ... I'm not familiar enough with your area to try and see which is closest to you.. I was going to make some phone calls to see who did/didn't take medicaid.. Also.. here are all the pain management docs that google says is close to you.. it's even got maps and stuff.. Have you been to these places?  Have you talked to Jay-Z?  sad Oh girl, I'm worried about ya..
Posted 7/16/2007 5:13 AM (GMT 0)

oh man, erin....I don't knwo anything about any of that but I wanted to give you my support on feeling better!!!!! I'm unsettled hearing this and will add my worry to Ducky's!!! Take care sweetie - I'm thinking of you!

****

Posted 7/16/2007 6:33 PM (GMT 0)
Oh Erin..... Yes its true that even my rheumy has never offered a pain med either, and prednisone? ha! I don't even get offered that unless its BAD! he's a bit stingy..I'm pretty much forced to wait it out unless I really complain and/or go to urgent care like the last time!

I just can't even begin to imagine your level of pain and don't understand why the pain meds are not working...I hate hearing you hurt so much! I think you should be able to be seen by a pain specialist that is just absurd, where else are you supposed to go?

I know that methadone is used as a substitute for addicts when they are going off? but I don't know of its use as far as your situation...and I know that the prednisone WORKS but it is not good :(

Ducky seems to have offered some resources so maybe those are some options..

I am with the rest and very concerned.
Posted 7/16/2007 8:57 PM (GMT 0)
Hi Erin - I just feel so way out of my depth here with the level of pain involved, the meds not touching it and the rissoles at med control not providing you with a service for being on medicaid. SO, like we have the most needy patients but they are not going to get treated but those who can pay for it regardless of need can get it post haste? Is that what I am reading here?  Is there no professional body you can formally write to to get allocated someone who willl treat you?

Like I have said before this kind of thing leaves me so angry and, well, distressed. You can imagine such things happening to you and yours and it leave a very bitter taste in the mouth. It's easy to say this Erin but you gotta hang fast there and ride it out as out there must be somewhere, there has to be.

 

[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[BEAR HUGS]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]] for erin k.

 

I hope that doesn't mess up your thread lines. I haven't a clue about the medical use ofo most drugs but I hahve had a google at methadoen and it gives the medical uses there as well as the opiate withdrawal common use but again the stress that it carries with it iits own dependency problems [and it tastes foul]. We don't have the overdose problems with it here in the same way as reported in some states n the US primarily because it can only be prescribed in daily doses admnistered by the pharmacy and it must be taken and witnessed by te pharmacist. I know this doesn't help you erin but there may be a short term use for it to manage your pain somehow. Mommy bear says explore all options when looking at use and dosage and should you use it only take the rescribed dose and don't do what I do - double up the dose of drugs f they don't work, I'm just stupid in that way.

 

How is everybody else coping?Ducky and Yally you got a week off or have I got it wrong again? Why only a week? My annual leave amounts to 27 working days a year plus public holidays and things like Christmas. Officially I work from home over christmasbut teh reality is I get 10-12 days off and only three of those count as leave entitement. You Americans work too hard and too long hours for too little pay from what I can understand watching CNN and NBC and the business channels. Yes I do try and broaden my bear brain now and again but I am often left as bewildered as at the start.

 

Time for bed - I have to meet the Director of Age Concern Japan in the morning and need to be at my best. Erin, my thoughts are with you and I will mail when I have something real to say that isn't sounding lame and useless like I feel.

good night and get well

The Bear

Posted 7/17/2007 1:06 AM (GMT 0)
erin, hugs to you hunny i hear you and feel for you....... i wish i could take ot for you but as you know i cant....... i know what u mean about the pred, i hate getting back on it and dang it is going to hurt getting off it but it helps soooooooo much, like no other pain med does. really no pain med makes me feel as good as prednisone.
i have a dear friend who goes to a pain management doctor, she put it off for years until her quality of life was so bad that she finally went and says she is doing comparativley great! begged me to make an appointment but i am afraind of the anarcotic drugs, terrified i will get hooked. but she HIGHLY recomends it! so try duckys info and let us know how u make out....... if u want to talk to my firend i cna arrage it maybe ? gentel hugs and luv mamayally

OT
now for bear.... i do not want to hear how u get a month off from work! end of statement! lol lol cry out loud!
anyway i got the 4th of july off and u didnt nananafoofoo :P
Posted 7/17/2007 3:07 AM (GMT 0)
:-)  thank you guys so, so very much.  i read each & every one of your posts on this...so thank you to each & every single person who wrote me back. :-)

 

ok...had Remicade today & my GI dude came to visit.

 

i told my nurses my problem w/ the pain & pain meds.  they did say that methadone is very commonly used.

 

GI dude was extremely helpful today; i was really surprised i had got SOMEWHERE with this issue today!

 

he completely understood my point of "anti-daily narcotics"...he understood the beef i have about me "wanting to feel when I DON'T have pain & when I DO have pain". which makes total sense to me, i mean...if i'm taking preventive narcotics DAILY for pain but DON'T NEED them, i don't want to take them...i calibrate how i'm doing by how intense the joint pain gets.

 

he agrees that the dilaudid 4mg just 3 times daily needs to go.

 

so he suggested Duragesic {thanks iMarzz!}, just to see.  he wrote me a RX for now until i see my PCP to help get through this acute joint pain period.

he suggested "just where it FOR NOW"...if it's not for me than by the time Aug 20th comes at least i'll have some experience with it.  had a big feeling he would suggest fentanyl {a few of my MD friends [and several here at HW] told me to give it a try at least}

so i smacked that bad boy on at 4pm today...i guess it's alright; they said it'll take about 17 hours to work.

i'm glad this fentanyl patch is itty-bitty, it's tiny.

 

Ducky, Bear & Yally thank you again for the info on everything; Duck THANX BUNCHES for doing all of that research.

 

momto3...i don't think it's really that the meds DO NOT work...rather I'M TOLERANT to them?  that's what i think.  been on some sort of morphine or derivitive of for about 4 years.  and i am in a catagory now of "intractable pain".

but, having had this RA case gone untreated for about 8 years i shouldn't really expect all of these Remicade, Enbrel, etc...to work right away & the joint pain IS NUTS.

it's not just pain...it's severe, crying, ER type pain when it gets bad.

 

thanks Camama for the well needed (((HUG)))

 

Theresa...thanks for your concern & thoughts as well.  i was on Neurontin plus other seizure meds for a seizure disorder...due to Lymes Disease.  i had a rough time on Neurontin (creepy crawlie up the spine, restlessness, insomnia) that & it also didn't help the joint pain neither at the time.

 

hey Jody, the morphine i had was 30mg Avinza {and then 60mg when THAT wasn't helping much}  this was a timed released med that i had to take daily...and all THAT DID was land me in the hospital with a big bad obstruction, eyes .

 

so methadone is definitely an option if we don't increase the as needed dose of the dilaudid or he feels i should altogether nix the dilaudid.

this Fentanyl patch is definitely NOT a really good pain med for me long term b/c i really REALLY don't want to be "masking" non-existing pain and my GI dude totally understands my feelings on that.

and my wanting to KEEP MY ADRENAL SYSTEM is a pretty just cause i think tongue well, at least i have a start?

it truly is a friggin' shame that steroids are really the only thing that truly helps the joint pain; but it'll be the death of me if i keep on the road i am now with using prednisone. 

long day!

 

oh...my hard earned 20lbs that took a year to put on? GONE mad i don't really care too much about my weight; in fact the lighter i am...the easier it is on my joints & to walk.

but when i go under 100lbs (for 5'5") all my docs give me crap about it & get on my case. eyes 97lbs now.

so GI dude is sending the good word to PCP that "i do eat!" he even saw me! LOL.

 

oy, that's about all.

letcha's know how this patch thang goes.

 

thank yo again so much

 

Posted 7/17/2007 3:09 AM (GMT 0)
BTW...i have seen a pain management spec. in the past (he suggested dilaudid & morphine)....just not since i got mediciad. my primary doc has been my "acting" pain doc.
Posted 7/17/2007 11:57 AM (GMT 0)
Gotta love Jay-Z.. keep us posted Erin.. we're here for ya!
Posted 7/18/2007 12:07 AM (GMT 0)
Erin, I'm glad something was done today for you, and you are correct, it IS a shame when prednisone is the only thing that really works because it is the truth..on Saturday we were in the car, and I had two left, and I took them. My husband later asked me why and I just said because they work. He doesn't understand how I can take so many different pills and still hurt, but you do!
Posted 7/18/2007 4:39 PM (GMT 0)
scool  yo! scool

{this smiley with shades looks like it beckons a "yo"}

 

i moaned about the duragesic on "Moanin'" thread...

 

yeah...this prednisone has got to go! i'm a junky! well, i look like one that is!

crap...been 3 nites NO SLEEP...racoon eyes, friggin' pale as a sheet; so NO STEROIDS TODAY. don't care how bad it gets.

it's just too much! especially when your heart is pounding so hard it makes your chest hurt. sad

i really think whatever company that makes prednisone should re-vamp it.  it needs to change.

blah.

 

{{{{{{{{{hugs}}}}}}} luv you guys.

 

me

Posted 7/24/2007 3:23 AM (GMT 0)
Erin hi,

may I make a surjestion?I am on medicade and you are right there are alot of clinics and doc's that want to this typ of insurance and yes it suck's.Because of this very thing.I do not have alot of choices when it come's to doctor's because of this.OK I have been on Methodone for about a month and had to come off of it because I just could not deal with it effected me in way's that I didn't like I would stay really tired I had problems with consatration and all I wanted to was sleep.I was taken off of this and put on the Duragic pain patches and they really do help and I take oxycodone 30mg for break through pain and it has kept my pain to a level that I can live a some what life.I see a pain doc and it was the best thing that I have done.I see that your PCP is the one scripting your pain meds.If I was you I would tell him/her that what you are on is just not helping and that you have to take more than you are suppose to and ask him if he could uppe the dosesage.please let us know how it goes's

OH you can all so call the division of medicade and they can get you a list of doc's that medicade cover's that will help you find a new doc that will help you.
Posted 7/26/2007 4:05 PM (GMT 0)

Thank you so much Curley.

Thank you also for the tips & info.  You're right, right now this patch at this dose is pretty pointless to have on; this is my 4th change of the patch & I thought by NOW I would have felt a marked difference in pain level...nope!

It is only 25mcg...perhaps 50 would be better.

Since Friday I've been feeling really sick; don't know if it's from meds or a possible kidney stone again...but I've been throwng up all over the place!  Can't even get 10 minutes in  a car without my head in the bag.

Did you get bad vertigo & motion sickness in Fentanyl?  WOndering if that's what's causing the nausea & vomiting.

Thanks again.

Posted 7/31/2007 1:40 AM (GMT 0)
Erin hi,

I am sorry that I have not gotten back to you sooner.When I was first on the patch I deed noticed a lot more nausea but not so much of the vomiting.Untill I got use to the patch I would have what I call dizzines(sp)but after my system got use to it that went away except the nausea and that is because of my Crohns.I hope that you get to feeling better and let me what you do about the pain meds.
Posted 7/31/2007 6:41 AM (GMT 0)
thanks curley!
i do appreciate your input on this.
i don't think the duragesic is for me...after 5 systems there was absolutely NO benefit regarding managing the pain...it was just adding an additional med to everything else.
but...can't say i didn't try.

come monday i guess i'll talk over about what to try next.

thanx again!
Posted 8/1/2007 5:51 AM (GMT 0)
Erin, Sorry I'm popping into this so late in the conversation. I also had the 25mcg patches and they weren't nearly enouh to touch my pain. I didn't have any side effects from it but no benefit either and trying to get the stupid things to stick was a major pain in the neck!

The kind of pain that you have requires constant treatment so that it doesn't get beyond a controllable level. For so long, I suffered the same way and it would take hours and multiple doses to get the pain back under control again. After my misadventure with Duragesic, we went to Oxycontin and for the first time ever, I had good, long lasting relief. I was finally able to sleep more than a few hours at a time. We had to tweak my dosage, but on 40mgs, twice daily, I'm doing very well. Of course I'll never be pain free, but this is much more tolerable now. Once I get back to the point where the Humira is at peak efficacy, I hope to be able to lower my dose to 20mgs of Oxy, as I had previously. What i don't have now and need to address with my Pain Doc is something for break through pain. There are too many occasiona where I have an increase in pain and have little choice but to suffer, or take an additional 20mgs of Oxy.

Today for instance, I had a dental appt. They did 4 fillings which meant a bunch of those awful novacaine shots and hoilding my mouth open for an extended time. This has killed my TMJ and I'm just about miserable. Something short acting like Vicodin would be very helpful, but my Dentist won't script it for me. His opinion is htat since I'm already on pain meds, I don't need anything else. He can't understand that my meds barely control my chronic pain and that adding additional pain requires additional treatment!

Have you given up on the Duragesic? That really is a good med and I loved it when I got it via IV in the PACU. If I could get the correct dose and find a way to make the darn things stick, I'd be quite happy.

I hope that you are successful in finding the correct med for long term relief and something to cover you for breakthrough pain. Best wishes.

Posted 8/2/2007 7:22 AM (GMT 0)
keah wow thank you! EXACTLY...no benefits from the darn thing!  it was just "there"...on...and doing nothing.

this sounds bad, but the least that the Duragesic COULD HAVE done was give a little sedation...nope.  some meds have a relaxing effect [hell at least i could have slept through some pain] and it didn't even provide that. 

yeah, i think 25mcg was just too little of a dose i suppose. 

 

umh yeah i did give up...ripped the da*m thing off.

 

didn't have trouble with it sticking as i used a Tegaderm over it...but i did get irritated & red around the perimeter.

 

i see what ya mean by your stating i need maintenence of a steady level of pain meds to avoid it going out of control...and i do agree, and i would give that same input to other people too. 

my reservations with continuous daily narcotics like time released and patch narcotics is that "i want to know when i'm NOT feeling pain naturally" you know?

true that the joint pain is there & is intense more times than not...but those "NOT" times i use as a measurement kinda.  i like to say "hey the joints aren't bad..." and not have to use any meds at all for the pain. or sometimes the knee & joint pain is at a level like a 4 or 5 of 10 and i can handle it w/ ice, rest, heat & tylenol.

 

today? i went up to 20mg of dilaudid, 150mg of voltaren, 4G of Tylenol, LidoDerm patches, ice, heat, elevation and i'm still awake with knee & leg pain. eyes what's it gonna take?

 

is Oxycontin more potent than Dilaudid?  my PCP said dilaudid is the strongest? i dunno' about that. eyes

 

i'm happy that w/ the pain meds i have now...they have no ill effects. i don't get drowsy, don't get dizzy & when or if the pain gets controlled i can go out & not feel like i took any meds (you know...i don't want to feel drunk or anything).

i wonder if the dilaudid can be written for up to 4 or 5 times/day at 4mg????

 

in all...it takes about 8 or 12 mg at one time to help break the pain.

to me, my RX for 4mg TID is not effective nor does it make sense b/c i run out of them.

 

i have an appt on the 20th so i have to wait till then.

 

thank you for your helpful insight into this.

erin

Posted 8/2/2007 8:08 AM (GMT 0)
Erin, I completely understand and in some ways, I'm like you. When I got switched to Humira every week and then started on pred, I was feeling much better. I tapered off the Oxy completely using some old T3s that I had in the house and it went very well. I managed no withdrawl, However, I discovered that I was not in a remission either. I still had lots of pain and could barely walk. I needed that pain relief so I went back on, but at a lower dose.

After 3 1/2 good years with my Pain Doc, they allow me some leeway with my dosing. I get 20mg tablets scripted as 40mgs BID. I have the option to take 1 or 2 pills based on how I'm feeling. If I get past the mornind stiffness and feel pretty good, I only take one pill. BUT, there are sometimes days like today, where I had so much pain that I needed an extra 20mgs to function.

I think this system is working out pretty well for both myself and my Docs. I have the power to treatmyself accordingly and they are not concerned that I'm out there trying to have a party. I have just enough joint destruction to ensure that i will never be pain free, so I refuse to give up my pain meds.

Did you read the article I posted about Rheumatic pain? I think you will ike it. Some parts get tough to follow, but there's some interesting points made about how rheumatic pain can be exacerabted and how it can turn into chronic pain. I thought it was worth sorting out the jargon.

I hope that your next appt goes well and that they can find the right med and dose for you.
Posted 8/3/2007 9:03 PM (GMT 0)
Erin...HUGZZZZ...just reading your post made me think of myself and want to cry. I am in the exact same boat as you but NO INSURANCE. I have not had a bonescan yet but I know it will be sooo bad. I take PRED everyday just to get out of bed because the arthritis is so dang bad. Ive been on vicodin before and that doesnt kill my pain. Havent tried dilaudid except for my crohns. I really just want something that works.

I also OD on NSAIDS and tylenol and if I miss even one single dose of the "devil" thats what I call Pred, I PAY BIG TIME for it. Im so tired of being in pain...and I hate the way Pred destroys your body, your mood, your everything.

It used to be that the crohns was the biggest problem but now the arthritis and muscle weakness in my right leg and side definitely make that look like a moehill. So I empathize!

I really hope you find the solution and there is light at the end of the tunnel. If you do find something that actually helps please keep me in mind and shoot me a message. I, at the age of 27, feel as though Im 80 and Im SO SICK TO DEATH of these docs who are scared to prescribe any pain meds in fear of addiciton and other crap...this is reall pain here! GL and KUP!!
Posted 8/4/2007 7:04 PM (GMT 0)
Can someone tell me if differnt drugs work on some people and not on others for pain???
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