Another dex trial

[samandmichelle]

We saw the urologist today and decided that since Elmiron didn't work, and we're trying to avoid instillations, that she was prescribed dextroamphetamine sulphate extended release 10 mg. If that doesn't work, we're going to try misoprostol (Cytotec). We'll keep everyone updated as we go! Wish us luck. :hi:

[SharonA]

You got it you guys. *Thumbs Up*

[justice4j]

Sam and Michelle,

Good luck! Please let us know how you do. I'm sending you the very best healing energy from the Universe and God. I know you will do well.

Are you by any chance seeing Dr. Dana Pecht? If so, you are in a wonderful Dr.'s care.

I just posted about my experiences trying to get Dex. I invite you to do a search for my post, j56.

There is a thread that is 101 posts long that is FULL of info, before they shut it down cause it was too long and hard for people with dial-up.

Also, search the following members posts for info:

NGazerro
BBB
Barbclay (sp?)
MayDay
Mothergoose

I hope you get the relief that so many others have found. My hope is with you. PM me anytime or at jans88s@yahoo.com. From what I've read on posts here, if Dex works it will do so pretty quickly. I so hope this works for you!

Love, Peace, Peace of Mind, and most of all Symptom Free Days,

[ngazerro]

I hope you have as good as luck as I have on it... :smile tee Please keep us updated..

Nina

[samandmichelle]

Day 1 has come and gone and it's got promise. She definately has more energy. Her frequency was way down (from 10-12 times a day to 4 - and she said it didn't hurt, but that she couldn't remember if that's what it was supposed to feel like). She's going through her first period since October right now, so we may not really know how things are going until next week, but it's looking promising. She's taking to the Dex ok - definately has more energy. She said she's sore - but not really in pain, so this is very promising. Her pain level went from an average 5-7 over the past few weeks, down to around a 2, even with period cramps, today.

I repeat, she _definately_ has more energy, it's a little scary. :help:

We'll update again later today, and once we talk to our uro, we'll get more info out to everybody (her contact info, etc.) - but she's still very hesitant about trialing this (schedule 2 and all).

Thanks for all the best wishes, and we'll talk to everyone soon!

-Sam and (Michelle who's running around the house)

[ngazerro]

Glad to hear there is some improvement. Just make sure she does not do too much until her body gets used to doing more.:smile tee Happy 4Th

[samandmichelle]

Day 2 is going well. Pain is still down at a 2. She says she just feels weird - I think there's just going to be some time getting used to the drugs. Once she starts the new birth control, I have a feeling that she'll be symptom free within a week. It just seems like thats where this is going, and we're thrilled.

-Sam

[ngazerro]

What dose did she start at? If it makes her feel too weird you might want to talk to her doctor about lowering it. I take 5mg morning and sometimes 5mg around 12:00. Glad to hear pain level is down.

[samandmichelle]

She's taking 10mg extended release in the AM. She usually has a couple of days of weird getting used to new drugs. We'll see how it goes - and if it's still around, call them on monday.

[hdb1982]

What type of med is Dex? I would like to research it and maybe ask my dr about it. HE is very willing to try things at my suggestion. I just have to take him info to research prior to him rx'ing it.

[samandmichelle]

It's a schedule 2 amphetamine - dextroamphetamine sulfate.

What type of med is Dex? I would like to research it and maybe ask my dr about it. HE is very willing to try things at my suggestion. I just have to take him info to research prior to him rx'ing it.

[justice4j]

Congratulations to Sam and Michelle,

I am so glad you are doing well. We must have an incredible problem in California with Dextoramhetamine or something. I am hitting road block after road block.

I can't emphasize enough how glad I am for all of you that have been able to get a doctor to go out on a limb for you. It is, to me the finest example of what doctors are supposed to do - listen to a trustworthy patient who has done their research "homework" and then take a chance that the patient will improve.:angel:

While I join your happiness, I can't help but be in tears b/c I can't try this med. I've even looked into Mexico, a Mexican Rx for meds is not valid in the US and I could be arrested for trying to cross the border with it.

Again, it is wonderful news about Michelle, like Nina said, maybe she would do better with 5mg. in the AM and 5 mg. at 12 N.

If I ever have the good fortune of finding a doctor willing to treat me with this, it seems like it's going to take a miracle.

If anyone knows how to contact Betsy, Dr. Brookoff's patient -BBB- or knows anyone in Arizona that has a Dr. willing to prescribe this amazing treatment please let me know.:pray:

I could afford to fly to GA maybe X2, but then I don't know if I could get someone to continue to follow me here...

:pray:

[samandmichelle]

Still going well. We're going to add cystoprotek back into the mix (1 x twice daily) and see if that'll bring the 2 down to a zero. Modicon comes into the mix on Sunday (new birth control).

She said she's still feeling "weird" - like she just woke up from a nap. I have a feeling it's just her body getting used to the higher metabolic rate, but if it continues through the end of next week, and the benefits remain, we'll see about 5 & 5.

We shall see...

[ngazerro]

I tried the extended release at first then switch to regular. The extended release made me feel a little weird. She might want to change if it keeps up. It does take your body a litlle while to get used to new meds. I take 5mg twice a day not extented release. I don't take it on sunday. A day to rest up for the week. Thanks so much for the updates. :smile tee Happy 4th!!

[samandmichelle]

Day 4 and no symptoms. Pain is a zero. It works. I don't really know why, but it works. She's on dex sr 10mg, cystoprotek (1 twice daily), and modicon. We're going to talk to our uro tomorrow about her doing a study and/or giving her info out to people. :woohoo::woohoo::woohoo:

[lmq78]

Thank you so much for this information! I live in the metro Atlanta area and I am very interested in getting more information. I also sent you a private message. Please keep us updated! Thanks

[Wolfe]

I'm so happy for you! I'm subscribing to this thread because I'd love to hear about your progress. I'd try the dex because it would help my Fibro too, and it's people like you who are breaking ground for the rest of us. A study would be GREAT. Let us know what your doc says tomorrow. Maybe getting off the time-release would be an improvement.

:woohoo: :woohoo: :woohoo:

[ngazerro]

That is so great. Mine got even better after a couple of weeks! :woohoo::woohoo:

Congrats!:smile tee

[justice4j]

Hello IC Sisters and Brothers!

Nina,
We cannot wait to hear back what will obviously be a very good report tomorrow.

Please, can you ask when the FDA study will end and when they will publish the results?

Thanks!

Good Luck and MY VERY BEST WISHES FOR SYMPTOM FREE DAYS ALWAYS!

Excuse my tears of joy on the keyboard.

LET's WHIP THIS THING TOGETHER!

[justice4j]

SamandMichelle,

I course I can't wait to hear your day by day progress either.:woohoo: I've been in contact with Karen Timmer, a licensed therapist in the Atlanta, GA area whose friend went from bed ridden 24/7 to working full time because her doctor also took a reasonable chance for the right patient - one that is compliant and trusted.

Please tell your doctor, that as a former nurse, I applaude her for being a pioneer and giving you the opportunity to really beat IC/PFD:angel: ( I don't think many people have one without the other, at least to some extent).

I think I speak for all of us when I say that we are overjoyed hearing your progress. Without hope, it becomes even tougher to combat this ugly disease.:cussing:

[justice4j]

I don't want to miss one post on this important thread.

I think I subscribed, not sure. Someone please walk me through it and if you don't want to here, pm me please. TIA.

[Wolfe]

Janet,

Scroll up to the top of this page. You'll see a link above the first post called "Thread Tools." I click subscribe and then "immediate notification by e-mail," so I know as soon as the discussion continues. (I work on my computer all day. I edit books and am currently co-writing (a very boring!) one on direct sales.)

I am currently still doing better after a week on imipramine, but I sure would like to have more energy and less pain from something that more directly addresses the Fibro. And wouldn't it be wonderful to drop a few of these other expensive meds??

[samandmichelle]

Day 4 - So last night we decided to really try and see if this drug was working, and we went to mexican. She had some food that was spiced, but not necessarily spicy - no problems, still a zero.

Day 5 - I left a message for our uro this morning, but she's in surgery today, so I may not hear back from her. I asked if we might be able to try the 5+5 regular release instead of the 10 extended. If she calls me back, and doesn't send me through her nurse, I'll talk to her more about whether or not she'd be willing to write it up and/or accept other patients who want this treatment.

Our main goal is find a way to HEAL the bladder, rather than just mask the symptoms. Dex seems to be a potent method of stopping the insult to the bladder - but case studies have shown that it does not necessarily promote healing within the bladder. While Michelle is on Cystoprotek (both for additional ammo against potential pain, and for it's homeopathic qualities), we're going to try to get her on misoprostol (Cytotek). We think this might provide to "perfect storm" where the bladder insult has stopped and a new protective layer can be added to promote healing.

Let you know as soon as we find out. Thanks everyone for the support!

Current meds: 10mg Dextroamphetamine Sulfate x daily, 1 Cystoprotek x twice daily, Modicon x daily

[ngazerro]

That is great!! I tested my bladder with starbucks sugarfree/fatfree coffee.
I now get to drink one at least twice a week. I try not to over do it because of my bladder. I have been drinking them for about three months now...

My doctor wants to do another hydro at some time and see what my bladder looks like. It would be great if it looks better. I know it feels better. Not having the IC pain allows you add more healing things to your diet that could in turn help heal.

I think it wonderful that it is helping.:woohoo:

Who would of thought!!!:smile tee

[lmq78]

I am so happy that everyone is doing great! Congratulations!!!

[Mothergoose]

I also am happy to hear you all are doing so well on dex, it does sound really pormising dosen't it.

Mothergoose

[justice4j]

Hi Everyone,

Sam and Michelle,,

You have got to be one of the most devoted couples that I've ever heard about. Sam, the loving way you write about how Michelle is doing is so sweet. And the way you show her that love by writing here, and researching is nothing short of phoenomenal! I thank you so much for being so attentive to this subject.:woohoo::woohoo::woohoo::bow::bow:

Actually, the Dex itself may be promoting some healing because it reduces the permeability of the bladder lining. One of the theories of many researches is that leaky GAG lining of the bladder is one of the culprits of pain b/c it allows the toxins and uric acid filtered out by the kidneys to come into contact with the damaged bladder. Maybe in time reducing the permeability of the lining is a sort of healing, or at least a prevention of further damage.

I am 5'3 and weig about 125 lbs. I'm wondering if Michelle, Nina and I are at all similar in size. PM me about this if you want rather than here.:smile tee

NINA,
If you have the hydro at some time, know that sometimes it makes IC worse post op for about 2 weeks. The last one I had was 10 years ago and that was true for me.

I'd be a little afraid of anything with Aspartame in it. Donna has said here on the boards that she is diabetic and uses Splenda w/o a problem. Also, google Aspartame + Donald Rumsfeld (or is it field?) There are some intersting stories about the link between the 2. I accidentally ate a coffee mint and didn't know it had Aspartame in it. Aspartame cancels out Elmiron (Nina, I remember you don't have that expense anymore! Yeah!) and I had symptoms that waxed and waned over a period of a few days until I figured it out. IMHO, if one is not diabetic, stay away from Aspartame. Do a little research....you'll be surprised at what you find.

MG,
I hope we are reading YOUR success story soon.

Congratulations to everyone.

I have a little good news....my student cc'd me an email she sent to her psychaitrist begging him to take one more patient - ME. She wrote beautifully and if anything will get him to see me, it's her email.

I also have a "lead" on a Dr. 20 miles from me that might be agreeable.

I emailed my gyn who is reluctant.....I actually used the word "beg" in asking her to read some of the posts here.

I have to ask for everyone's support here. Pray to God and the Universe that I please be able to just try this at least one month w/o the expense and hassle of traveling 3,000 miles to do so.

Nina,
Please ask Melinda and/or Dr. Hubbard when the FDA study you're in will be reported/written about.

Have a great week everyone.

[SharonA]

Janet...I do hope you are able to find a doctor who is willing to allow you to at least try this. I know you have been searching for something to help for a very long time.

I am not personally completly convinced about this med, but I do find the reports very interesting. You know, every med we take for anything was once new and untried. I just hope the best for all of you who are conducting your own studies on yourselves. What I want more than anything is for someone to find something that helps all of us.

Please stay safe everyone. (((Hugs)))

[samandmichelle]

Congrats! I left a message for our uro today - but haven't heard back. I think we're going to try to move to the 5+5, as she's really sleepy at night on the 10 extended. Keep us up to date!

[justice4j]

Hello Everyone,

I finally received a phone call tonight at 7:25 PM from a psychiatrist I had been leaving messages with several times. There was a trick to getting to the right person to schedule them, which he of course advised me of.

He is so nice, low key and has a charming European accent. Plus, he had been a pediatrician before so is well versed and comfortable with DEX and treating pain with amphetamines because of the way the brain and nervous system respond to long periods of chronic pain.

He even chuckled when I mentioned the overly upregulated microglial cells and said, "Yes Yes! You understand."

I told him about my 9 diagnoses and he completely understands why I want to try Dex.

No more worries of flying to Atlanta and KY.....This Dr. is FIFTEEN MINUTES from my home. He's at UC Irvine Medical Center which is a little hassle trying to park, but they have transport carts to get you from the parking structure to the correct building for each specialty.

I can feel my whole body starting to "let go" and relax....

Sam and Michelle, thank you for your ever faithful reports here. I find it really interesting that Michelle is so sleepy at night on an amphetamine....wow! I'm interested in hearing your Dr.'s reports on that.

Nina, thank you for all the extra time and effort you took reporting to your Dr.'s office on my behalf and just your compassionate support.

MG, Thanks for helpiing to keep this thread alive while those of us who care to try and get this treatment.

Laura, thanks for all your efforts and emails.

MayDay, thanks for keeping track and cheering everyone on. Notice I chose the color Turqoise for you? Matches the purse you painted for me.

I cannot fully express my gratituted to everyone who has stayed with this thread, participating, giving us reports, and contributing to our knowledge. This is how you beat an illness and the finest examples of empathy any human being could be expected to exhibit.

Everyone of you here is a treasure. I wish you all the best.



Thank you all.

Peace, Joy, Love, Hugs and Symptom Free Days to ALL!

[samandmichelle]

Like we said in the other post - yay and congrats! :woohoo:

Still no pain on Day 6 - but when she got home last night, by 8 it's like lights on, no one's home. If I don't hear back from the uro by noon, Michelle's gonna call and press the issue. Those of you who are on 5+5 - does that seem to alleviate the weirdness, but still treat the IC?

[ngazerro]

Janet,

I am soo happy for you!:woohoo::woohoo: I hope it works as well for you as it does for me. Please keep us updated.

Hugs Nina

Mothergoose, I am happy you get to try it too. with more peoplr trying the dextro, we get to see how many people it really helps!!:woohoo: Please keep us updated.

:grouphug:

[ngazerro]

samandmichelle,

The 5mg & 5mg works great for me. Some days I only take the 5mg. I even have gone three days without taking any and my bladder was fine, but I have only try that after being on it for 7 months. I don't take it on sundays because it is my rest day. Working with the 5mg & 5mg you have more control over what your taking. I would talk with your doctor about it. I am so glad it is working for her pain.:woohoo:

Nina

[Wolfe]

Wow, Janet AND Mothergoose! I am SO excited! I can't imagine how excited I would be if it were me; must be I'd come out of my skin.

I'm hyped about reading your responses and how well you are doing. I'd love to hear that someone else with this is doing better. I'm so glad for you both!

[justice4j]

Hi Everyone,

Thanks for the support re getting Dex. MG, that's a good suggestion about going directly to the office to make an appointment. I may just do that this PM.

Sam and Michelle, wow....I am such a night owl I can't imagine 8 PM as a bedtime. That's like a child's bedtime. Maybe part of it is Michelle's body needed the really sound sleep for so many months that it will take some catching up, but reading what you wrote....I'm thinking Nina's 5 + 5 advice is what I'll ask for. Is Michelle petitte? I'm not very big - 125 lbs. and I wonder if that has anything to do with the Dex effects?

I'm so sensitive to meds that years ago when they still used Nitrous Oxide more, I woke up from an impaceted 4 banger wisdom teeth extraction running in place at the receptionist desk afterward. Then, I tried to run down the street while my now ex-husband parked the car to go get the Rxes. I was mumbling...."I"m a runner time to train....over and over again. IT made me a complete nut job. LOL maybe some of that is left over?

Nina, thanks for your constant encouragement. MG, Good luck to you as your quest begins soon.

EVERYONE! KEEP THIS THREAD GOING AND IF IT GETS LONG AGAIN, RE-START IT!

My best to everyone.:smile tee

[prestwood16]

We saw the urologist today and decided that since Elmiron didn't work, and we're trying to avoid instillations, that she was prescribed dextroamphetamine sulphate extended release 10 mg. If that doesn't work, we're going to try misoprostol (Cytotec). We'll keep everyone updated as we go! Wish us luck. :hi:

I'm so happy for you!! I called my Uro/Gyno Specialist (the best in my area and very big in IC research) and he said absolutely NOT to Dextro!!! He said he would prefer ariddalin (?) before ever, EVER trying Dextro!! He told me it is just to easy to get hooked and to many side effects. He also stated Dexto takes away to pain and doesn't offer any real healing to the bladder, as does elimiron and bladder instillations!! He did say that a lot of out meds are like that but are not highly addictive. Him and my local urologist have decided to do another cysto with hydrodistention next week, since I haven't had on in almost 5 yrs! Their thinking I could have Hunners Ulcers!!:cussing: Please anyone who reads this pray :pray: that I don't! My specialist did say he is doing a trial research that is a month long and he was talking so fast I didn't catch the medicine he was using, but we might try after the cysto. But, it sounded like it was in the same family as dextro or a neighboring family that he felt more comfortable with!
I believe right now Dextroamphetamine-sulfate or (BRAND NAME - DEXETRINE)is definitely an agrument between Urologist, Research, and Gyno. In the articles I have read, the women's threads I've read from here, and speaking with my specialist, our MD's are on one side of the fence or the other and at this given point in time they're not willing to cross.
Right now, I'm chosing to listen to my specialist. He has studied and researched IC 100 thousand more times then me. So, I'll go have my cysto w/hydrodistention and will go from there!!!:pray::pray::pray::bonk::bonk::bonk:

[ngazerro]

prestwood16,

The side effects of Dextro are :

Common Side Effects: (1) Nervousness. (2) Insomnia. (3) Loss of appetite. (4) Addiction.
Less Common Side Effects: (1) High blood pressure. (2) Rapid pulse rate. (3) Tolerance (constant need to raise the dose). (4) Feelings of suspicion and paranoia.

What to Do About Side Effects: The last dose of the drug every day should be taken several hours before bedtime to prevent insomnia. Nervousness usually goes away and appetite returns so that weight loss is rarely dangerous. Nothing can be done about the addiction except to remember not to stop taking amphetamines abruptly. If high blood pressure, rapid pulse, paranoia, or tolerance becomes a problem, the drug is usually stopped.

At of all the side effects addiction is the worse, and that only happens mainly at higher doses. 50mg

Addiction is also a factor in many of pain meds for IC. I had a friend whom was addicted to ultram, but it does not mean everyone will. She had a bad time coming off of them.

I know all the other meds I was taking for my IC had a lot worse side effects and harder on the body.

Everyone is different when it comes to thier treatment for IC and I am glad that their are uros that will try differnt things.:smile tee

Hope your cysto w/hydrodistention goes well.:)

Nina

[Wolfe]

Well that gives me pause. I've been on 4-5 Ultram a day for about 5 years now. Am I addicted? Do I care? Would I care if I were diabetic and needed insulin to function? "Addicted" means "given up to," and I probably wouldn't be in trouble even if I tried to come off them. And again, do I care? My mother was medically dependent on blood pressure medication for several years of her life. There's a difference.

I've gone through withdrawal many times of medications I had to give up for medical reasons. Yet: Is there something wrong with taking medications for medical reasons?? Is there something wrong with wanting to function?

[ngazerro]

Mothergoose,

Dextroamphetamine-sulfate 5mg is what is use twice a day. Adderall has other mixed things in it that my uro says you don't need. Let's us know how you do.

Nina

[ngazerro]

Wolfe,

Before I started the dextro I was on ultram 3 to 4 times a day also. It did help with the pain some but it made me so tired. I had no problems stopping it. I have not taken one since I have been on the dextro. I don't miss the dry mouth either...

Your right about meds that help you function!:smile tee

[Mothergoose]

Wolf :you are not addicted you are dependant on, just like anyone else taking a med to control a condition.

ngazerro: Thank you for your response

Mothergoose

[prestwood16]

Nina,
First I want you to know I wasn't at all being negative toward Dextro and thanks for all the info. I was really hoping he would say lets give it a try, but I was absolutely floored when he compared Dextro to Meth!! My local urologist was willing to research it, but now I feel if he does research it and prescribes it then it will be a breach in doctor trust, because they sort of work together. Dr Armstrong is my local doctor who I can get to in 20 min so I'm to still use him as always and my Specialist Dr Evans is 3 hrs away not convienant!!
But, I was and had been so excited about dextro in the past few weeks. I had even researched it on my own so I could know what I was talking about when I did talk to them. With Dr armstrong who Ive seen since I was 4 yrs old (i'm 31 now) I did good! He's like an old friend!! But, when dr evans called I became tongue tied!! I couldn't even pronouce the word "patents" how embrassing!!!:bonk: I was trying to make my points and I lost it!!
But, He is an excellent Specialist and he knows his stuff so will see!!
I am so happy for you that you have found relief!!:bow::woohoo: I hope and pray that I get there soon, because I do not know how much more I can take. If the Hydro doesn't work and/ or I dont have ulcers I'm definitely going to consider his trial drug or whatever he mention trial wise. They talk so fast sometimes it's hard to keep up!!
But, to everyone who is on Dextro I hate you!!!:evilsmile Just kidding!!!!Honestly!!!!:smile tee
But, to the rest of us suffering maybe our doctors will cross to the other side or they will find a drug close that makes them happy and will help our pain as dextro helps all of you. Till then we non Dextro's will suffer together!!!!:bonk:
Julie

[prestwood16]

Well that gives me pause. I've been on 4-5 Ultram a day for about 5 years now. Am I addicted? Do I care? Would I care if I were diabetic and needed insulin to function? "Addicted" means "given up to," and I probably wouldn't be in trouble even if I tried to come off them. And again, do I care? My mother was medically dependent on blood pressure medication for several years of her life. There's a difference.

I've gone through withdrawal many times of medications I had to give up for medical reasons. Yet: Is there something wrong with taking medications for medical reasons?? Is there something wrong with wanting to function?

I'm with you Wolfe!! I take 4-5 ultram a day and have for awhile! I get 120 pills a month!! As mothergoose Stated," am I an addict No, but Dependent upon YES." I need Ultram to get thru my day! And, somedays I don't need it, but that was mostly before the PAIN came in march!! Just as you (i think) said people who are diabetic have to have insulin, people with depression (me too) due to the chemical imbalance have their meds. So, if I have to take Ultram so be it. And, A lot of us at time have to take far stongers narcotics (which some doc dont consider Ultram a narcotic bc i have 6 month refills)!! Don't worry it's Ultram!! If it were Oxycontin then will talk!!!:smile tee

[ngazerro]

prestwood16,

No offense was taken. I just wanted to make sure the facts were stated. Wow, your doctor compared dextro to meth?? I didn't know that meth was ever used for medical purposes! Meth is a junk chemical made from all kinds of things that people use only to get high. Dextro made by a pharmacy to threat illnesses. I think I would have clearly pointed that out to him.

I don't think dextro is for everyone's cure for IC. I do believe it can help with cases of IC (like mine) where the other IC were not working.

[prestwood16]

prestwood16,

No offense was taken. I just wanted to make sure the facts were stated. Wow, your doctor compared dextro to meth?? I didn't know that meth was ever used for medical purposes! Meth is a junk chemical made from all kinds of things that people use only to get high. Dextro made by a pharmacy to threat illnesses. I think I would have clearly pointed that out to him.

I don't think dextro is for everyone's cure for IC. I do believe it can help with cases of IC (like mine) where the other IC were not working.

I guess I need to make the Meth thing alittle more clearer!! I think while he was rambling (they talk so fast i can hardly keep up) he comparing the ADDICTION FACTOR, not the actually medicines. I should have made that more clear, but I was more concerned about telling you I wish he had had another opinion and maybe he might later on. He's a very smart man and seems to be out for my best interests, but I've only seen him once. He's my uro/gyno Pelvic specialist. But, I think many people from NC on this web site go to Dr Robert Evans. I do know however my local urologist knows me and cares for me the best. I've seen him since I was 4 now I'm 31. I remember him caring me out of the recovery room to my parents. And, I know if he researched these sites he might be willing to give it a try! But, I'm going to wait until my next visit in august with Dr Evans to make up my mind if I want to pursue that route. Because, if I ask Dr Armstrong then I don't think I could go back to Dr Evans?
But, again to everyone. My mind was thinking quicker then I was typing! So, again to clarify the METH thing, I honeslty believe he was comparing the ADDICTION FACTOR!!! Because, he went on to say I would have to drive to Greensboro (3hrs away) every month for to make sure I was taking it right and so forth. I'm so sorry I brought it up!!!:bonk:
I honestly feel if my doctor is watching me and seeing me then Why not??
I want to try this drug 100%!!!! But, at the moment i'm stuck between a rock and a hard place.
And, again to all of you pain free Congratulations!! :smile tee I hope and pray the rest of our doctors see the light one day soon!!!:pray:
Julie

[Wolfe]

Julie, I hope you get it all straightened out with your docs and you get to try the dex. It's great that you appreciate the good care you're getting and you're willing to wait. I'll keep my fingers crossed for you.

You know, the whole Ultram thing is starting to tick me off. My insurance company has informed me that I am only allowed to take 4 a day; that is all they will cover. I've been to my PCP, my rheumy and the pain clinic telling them that at least once a month the Fibro pain builds and builds to the point that by day 2 or 3, I can't keep anything on my stomach and I'm in bed with a migraine. That if someone would give me half a dozen Lortabs, so I could snap one in half when that starts up and stop it in its tracks, that I wouldn't spend 4 days every other week alternating between bed and throwing up. But NO. No one gives "narcotics" for Fibromyalgia. How about just giving it for pain then?

The pain clinic did give me med to take when I "start seeing the white lights of a migraine." Thanks. That's by day 3, and I'm already going to have another 2 days getting my strength back, when stopping the pain in the first place would have avoided all this. THIS IS WHY I CAN'T KEEP A JOB. They don't like it when you don't schedule 4-5 sick days ahead of time. "Oh, yeah, I'm planning to have a migraine this weekend."

I saw on the news last night that 80% of the prescriptions filled online are for scheduled narcotics and are filled WITHOUT AN RX. I wouldn't dare. The moderator was saying what a problem this has become. But I think the problem is that doctors could and should be monitoring this if they weren't so afraid to write prescriptions!

(My soapbox for the week. Sorry!)

[Wolfe]

The above tells you what my practitioners are going to say when I ask for the dex, doesn't it?

Ya gotta laugh! :lmao:

[justice4j]

Judy and Julie,

Dang it! If a patient is willing to be carefully monitored, in a "heap of trouble" with pain needs HEEEEELP:help: Why is it they assume all of us want to become closet addicts? It is especially almost insulting when a doctor has been caring for a patient for 10 years or more. I am not unempathetic that the doctors are afraid of law suits, people who may unknowingly have a chemically addictive chemistry, etc.

But, it is truly ridiculous the hoops we who want to try this medication b/c we are DESPERATE FOR RELIEF FROM PAIN AND SYMPTOMS

Today, I sent emails to every IC support group leader listed in the US hoping that someone in a neighboring state to CA or in CA would know a doctor willing to at least seriously consider Rxing Dextroamphetamine. I did this to also further spark interest in this treatment so in time it may become a little easier to try.

I am also going to send them to Canadian group leaders. Maybe Canadian docs are more open minded......

So, now I wait until Aug. 19th to be seen by a psychiatrist at a uni med center in pain leve 4-7 and sometimes 12 on a daily basis. :cussing: It's mostly the PFD nerve pain thing......Maybe I'll call to see if there are cancellations every Monday or something. It's $300 per first hour to see the attending psychiatrist, and $175 to see the resident for 45 minutes and then the attending for 15 minutes.

I'm debating about shelling out the $300 dollars I don't really have available easily to see the attending. I spoke with him on the phone and felt really comfortable talking with him. Sigh....decisions....decisions

[prestwood16]

Janet,
Thank you so much for your message!!!:smile tee I know my doctor in Greensboro doesn't know me, from only meeting me once, so I guess in his mind he has the right to be hesitate! But, I know my local Urologist and my Urologist I've had for 27 yrs (for others I've seen hime since I was 4 now 31, I love him to death:smile tee) I know he knows me and wants what is best for me. and, he isn't going to let me suffer!! I have realized that over the past few months!! So, will see!! Right now my pain has eased off!! Frightening, but I'll cross my fingers!!!:pray:
Julie

[Wolfe]

I just popped in to say Good Morning to everyone, and to thank Janet for the supportive attitude. You know, I understand how careful doctors have to be; I really do. BUT I also know that when my PCP sees me once every other month for 10 minutes, and my rheumy sees me twice a year for 20 minutes, THEY HAVE NO IDEA what my life is like.

My rheumatologist moves my arms and legs all around and writes "normal range of motion" on my chart. She does't see that by the time I make it to the car, I'm taking Ultram for pain, and when I get home, I go to bed for the day. She hurts me! She thinks I'm doing great with my Fibro, and I probably am. But not as well as she give me credit for. This is the same doc I told about my migraines and asked for Lortab. She told me to go to the emergency room.

My point is, as Julie said, they don't really know us. They questions they ask on their forms are not designed to paint a picture of how this condition really is to live with. Every time I go in for a rescue instill and my uro asks me, "How are you?" I want to say, "What a stupid question. Do you understand why I'm here?"

Maybe a few emergency room trips in my record would make my doctors realize what I go through, but I really don't want to put myself through that misery. I know that unless I'm bleeding or on fire, I'll sit in a noisy room, in an uncomfortable chair under glaring light for hours in a waiting room. I'd rather be miserable at home.

Okay, I didn't mean to be gloomy. I just wish there were a middle ground somewhere, that doctors would take time to read these boards (mine doesn't) or ask functional questions. We seem to kind of get lumped in with every other patient, and that doesn't work.

Have a good Monday, everybody!

[ngazerro]

Wolfe,

You have a very good point, about doctors don't see our real lives. I had to chuckle when you said that about " how are you"!:biglaugh: That happened to me friday when I went for a rescue instill. Don't get me wrong I love my doctor, but friday when I was in a flare, she asked me "how are you". I felt like saying pretty crappy if I am sitting I am here for a bladder install.

It can be really frustrating. My heart goes out to all that can't get any releif. Until my little flare last week, I had forgotten how painful flare are. What a reality check. That pain will make you crazy!

Needless to say my flare is over.:woohoo:

Hope you feel better!

[justice4j]

Thanks for your replies everyone. :angel: It is frustrating to sit and wait the now 35 days to get to see someone who will Rx Dex for me. I have PMd SamandMichelle X2 and haven't heard back from them.

I hope they are doing well, and I miss their daily updates. :confused: If anyone has their private email, please tell them we really need their input right now and hope they are all right.

Counting the days.....35.....long 35.....:cussing:

I had a message from another psychiatrist office. Get this, they would see me in a month and their fee is "2,200.-2,500.00" cash up front! :loco: Even if I were dying from a life threatening disease I couldn't come up with that. And....this psychi is known for ordering lots of labs....great:rolleyes::tsk:

My SO did trigger point release that the PT showed him. He's a bass player and said the bands she described are easy for him to find b/c they feel just like thick bass strings. So the internal tps are great and the piriformis ones are back. I chose the Ps over the ITPs anyday.

I really have a good man and I know how fortunate I am. I've never had a a relationship where I felt that we each always "had each other's back" but I do now.

Okay. Everyone send out for Universal healing and no symptoms, wide variety of diet, exercise and enjoyable activities with SOs.:smile tee

[ICNDonna]

For Wolfe: You might consider extended relief ultram. You only take it once a day. It's more expensive, but your insurance would probably cover it.

Donna

[Wolfe]

Thanks, Donna. It's time for a new script, and I've never heard of that.

I've tried not taking as many. But I did read (again, somewhere here on these boards!) that you should keep it in your system by taking it at regular times. Because as it wears off, then you take one and wait for it to kick in, you're riding a very unpleasant roller coaster. Keeping at least a low level in the body avoids that.

I sure know it's true. I was tired but feeling better last night and skipped the Ultram. I woke up this morning wondering what truck had run over me. So I'll ask my doc about the extended release. Thanks again!

[ngazerro]

Janet,

Sorry you have to wait so long! Hope it passes fast..:smile tee

Wolfe,

I took the extened release also. It did help. It is true that if you let the ultram wear off it does not help the pain. Ultram only worked for me if I took it before my bladder pain hit. I hated the way it made my mouth so dry. Hope you get some days without pain!!

prestwood16,

I used to live in Jamestown in NC, right next to Greensboro. I love NC!! We stayed there a little over a year. We moved back to be closer to my mom. She lives in Memphis, and it took me over 12 hours when I would go see her. I hated being that far. I now live in lousville. It only takes a little over 5 hours. I would like to retire to NC one day. I just love it there!! 5 years ago my husband & I got married on Wrightsville beach. I loved being so close to the ocean.

[justice4j]

Hi Everybody,

One of the big tennants of pain management is to keep the pain from getting up to a high level b/c it just takes much more medication to manage it.

You know those PCA pumps in the hospital? P=Patient C= Controlled A= Anagesia (pain relief) They are programmed by the pharmacist so that no patient can get OD'd on a med. It has been proven tiime after time that keepiing the pain at bay w/o letting it get out of control actually causes the patient to need LESS pain meds.

For example, let's say the patient gets 10 mg. Morphine but only every 4-6 hrs. Then let's say that same patient has a PCA after surgery and they get a 2 mg. dose at about a 2 hour interverval, they end up needed much Less pain meds because the hill to climb for pain management, if you will, is much less steep.

Vicky Vale I hope will respond here. She knows about PCAs from having 22 years of Recovery Room experience. Hope she sees this, b/c I can't remember the Morphine dose frequency....if I'm right or not.

[Wolfe]

Well, then it sounds like extended relief is just what I need. It would be SO nice to take one before bed and wake up in the morning with some still in my system. I'll bet mornings would be MUCH better if not spent waiting for the Ultram to kick in, LOL.

Probably cheaper in the long run too.
Thanks, Everyone.

[camackin]

mothergoose,

just wondering how the dex is going so far for you? it's funny you said it makes you sleepy i found that too and thought i must be imagining it - it's an amphetamine! weird. notice any changes for the better yet?

C

[ngazerro]

I find it does not make me sleepy, but mellow sometimes. When I take it and stay busy, I don't get mellow at all. Meds are so different for everyone..

[justice4j]

Thanks all of you.

Nina, since you have been on Dex for 7 months, I really look to your posts as a good source of info both for me and to take with me


THIRTY


THREE

DAYS

FROM TODAY :cussing::woohoo:

Nina, as a long time patient on Dex, I can't thank you enough for keeping those of us waiting up to date. I know you're busy and this takes time. I know I speak for everyone


THANK YOU! Bow Bow Bow.....Funny....on accident, I hit the Rant smiley meaning to hit the bow.....LOL

[ngazerro]

Janet,

33 days from Now!!!:woohoo::woohoo:

Let's hope they go by fast!!:smile tee

[snowgirl]

Hi Everybody,

One of the big tennants of pain management is to keep the pain from getting up to a high level b/c it just takes much more medication to manage it.

You know those PCA pumps in the hospital? P=Patient C= Controlled A= Anagesia (pain relief) They are programmed by the pharmacist so that no patient can get OD'd on a med. It has been proven tiime after time that keepiing the pain at bay w/o letting it get out of control actually causes the patient to need LESS pain meds.

For example, let's say the patient gets 10 mg. Morphine but only every 4-6 hrs. Then let's say that same patient has a PCA after surgery and they get a 2 mg. dose at about a 2 hour interverval, they end up needed much Less pain meds because the hill to climb for pain management, if you will, is much less steep.

Vicky Vale I hope will respond here. She knows about PCAs from having 22 years of Recovery Room experience. Hope she sees this, b/c I can't remember the Morphine dose frequency....if I'm right or not.

pca pumps were a great invention. In the recovery room the pca pump is run by the anesthesiologist and their whole department. We the recovery room RN' s would actually start our own dosage and frequency then md would come along and keep it the same or change it. After 20 years you know the patient, type of surgery , what kind of pain is needed. Our pumps only had morphine and diluadid. In big university hospitals which is nice they also have fentanyl pain pumps which is nice.

The pumps allow the patient to use the medicine when needed. There is a safety factor progrrammed in as far as how many minutes you can have it. SO, if it is not time for a dose you won't get it until it is.......... like I said safety factor.

I was a big patient pain advocate. I would call the surgeon and say I am having trouble maintaining pain control here how about a pcu pump please sir?
I was respected for my years of experience in recovery room and the answer was yes no problem go ahead Vicky.

I personally had two sugeries one ovarian and one big bladdder surgery and I had the pca pumps just overnight and they took them away and put me on pain pills the next day.

Hope this helps. Vicky

They were also used on all c- section patients ladies, all hysterectomy, big abdominal surgeries as well. Quite a few orthopedic surgeries. Don't ask me why they did not use them on open heart patients and I did not agree with that. What harm would it be for an open heart patient to have the pain pump 24 hours? How cruel I thought.

[snowgirl]

Julie, I hope you get it all straightened out with your docs and you get to try the dex. It's great that you appreciate the good care you're getting and you're willing to wait. I'll keep my fingers crossed for you.

You know, the whole Ultram thing is starting to tick me off. My insurance company has informed me that I am only allowed to take 4 a day; that is all they will cover. I've been to my PCP, my rheumy and the pain clinic telling them that at least once a month the Fibro pain builds and builds to the point that by day 2 or 3, I can't keep anything on my stomach and I'm in bed with a migraine. That if someone would give me half a dozen Lortabs, so I could snap one in half when that starts up and stop it in its tracks, that I wouldn't spend 4 days every other week alternating between bed and throwing up. But NO. No one gives "narcotics" for Fibromyalgia. How about just giving it for pain then?

The pain clinic did give me med to take when I "start seeing the white lights of a migraine." Thanks. That's by day 3, and I'm already going to have another 2 days getting my strength back, when stopping the pain in the first place would have avoided all this. THIS IS WHY I CAN'T KEEP A JOB. They don't like it when you don't schedule 4-5 sick days ahead of time. "Oh, yeah, I'm planning to have a migraine this weekend."

I saw on the news last night that 80% of the prescriptions filled online are for scheduled narcotics and are filled WITHOUT AN RX. I wouldn't dare. The moderator was saying what a problem this has become. But I think the problem is that doctors could and should be monitoring this if they weren't so afraid to write prescriptions!

(My soapbox for the week. Sorry!)

Judy, can you take ultram ER it will last you longer? Bigger question will your insurance pay for ER release mine won't. But pain clinic had samples. You only take one pill every 24 hours it worked. Vicky

[Wolfe]

Vicky, I've never tried them but I'm going to call my insurance company and ask. I'm willing to get a month's script and try it. If it doesn't keep me awake at night, I'm all for it because it's fewer pills to remember to take. I actually write down when I take an Ultram because when I'm hurting, I stare at the clock and try to remember how long it's been, how long before I can take another. Too much mental energy! :smile tee

[Melanie R]

Hi there,
Height and weight regarding side effects of this med is a very interesting topic to me!!! As I am small and am always having extra side effects to meds than the average person, it can be difficult to figure out which dosage is right for each and every one of us. I am 5ft.2in. and weigh about 103 pounds. I have lost about 5 in the last few months due to pain and not wanting to aggravate symptoms with any foods I might be craving. I just started the 5 mg dex in a.m. and 5 mg at night. I took my first dose at 6:45 pm and can't wait until this week is over so I can see how I do. I have noticed that I am sleepy on the first dose of dex and feel a bit nauseas. I can't imagine that a smaller dose would be effective on my bladder though.

So for now I am going to stick with the current dosages and see if it continues to be a problem in a week or two. I am ecstatic that my doc let me try this medication as he does not know how to treat IC as well as other docs on here. He is open to new ideas though and anything that will help! I appreciate that quality in him most. Also, he is eager to learn whatever new reputable information I have found by researching on this site :)

Take Care,
:angel::hi::pray: We are all so important in order to keep one another
well! Without each other and all of our posts, where
would we be in getting better?? ...
Not nearly as far as we've come!!!

[camackin]

I've noticed some nausea and decreased appetite from the dex and I've been eating a little less. I'm 5'3 and 120lbs so prob not a good idea to lose that much. I think I've maybe lost 2-3 pounds in a months.