Question/Dex

[strobers]

I've dealing dealing with my IC/CPPS for 17 months now. I'm in the middle of a flare and at my wits end.

I had to go to the emergency room last month and I brought along a lot of the research materials and posts from many of you hoping I could get the ER doc to give me some. She saw how much agony I was in and gave me a dex script for 60 pills.

What is scary for me is that I'm in a Nether World when it comes to this disease. My uros have given me multiple diagnosis: IC, CPPS, LUDE, and prostitis. I have many of the same symtoms as many of you, but some weird ones that I can't remember having read here. For example, I have this constant sense of wanting to void, but I can hold it for a few hours. When I go, a few seconds later it feels like I still need to go. My pain is more of a hot/irritated smoldering ache. Sometimes just urinating will make my flare. Do any of you relate to these symptoms at all?

I took two of the dex this morning around 11:00; 10 mgs total. I don't feel hyper. I actually feel really mello. It's kind of weird. I don't know if it's my imagination, but I feel a little better, but I don't know if it's the placebo effect.

I weigh about 175 pounds. What dosage do you suggest I take based on my weight? I have been flaring since last Wednesday and am really losing it. Thanks for the support.

S

[OrlandoP]

I'm on month 17 as well. Just try to keep your chin up--I went into remission after 4 years!!

I really think it's a mistake to be playing with Dex without a doctor's supervision. From what I've read, I think going over 10 mg is a no-no without really good reason to do otherwise. Is it helping you at all?

As for your symptoms, I lean towards the "smoldering ache" than stabbing pains. It's why none of the meds work for me--nerve pain is actually more shooting and stabbing type pain. I hear you, believe me. I have found that percocet will sometimes take the edge off. My greatest frustration is not the disease, but that I am completely at its mercy. There is no pill I can take to effectively manage the pain consistently.

[Briza]

I agree, your dr should be consulted regarding dosage and any dosage changes. Best of luck with dex.

[ICNDonna]

My suggestion has to be to consult with your own doctor on this. He/she is familiar with your condition and your other medications. We cannot advise you on dosage.

Donna

[strobers]

Thanks for the feedback everyone. Honestly, if none of the doctors I see has an inkling about this medication, asking them for their input regarding dosage wouldn't really do me much good.

I may take 5 in the am and 5 in the pm on my own, but honestly, I just don't want to get on another medication.

There has got to be another way. It's just a matter of being patient on continuing to work in all the other areas of my life.

I'm just going to take it a day at a time.

[snowgirl]

Hey if none of these md's have in inklinck about the dosage of this drug then what about the md who prescribed it to begin with? Vicky

[ngazerro]

I have been taking 10mg of dex with my doctors orders for over 10 months now. I split it 5mg in morning & 5mg in afternoon. I have had great results. My IC has been in remission for about 8 months except when I got a bladder infection. It has been the only thing that has worked for my IC. You might want to print off some of the studies to talk to your doctor about dosage. I don't think weight plays a big roll in dosage. My theory has been to take least as possible with results.

Hope that helps
Nina

[strobers]

I am going insane with the "I feel like I need to pee all the time" feeling. I actually could handle the pain by itself. It is the constant feeling of having to pee that is just eroding my sanity. It is just the pits. I have 55 5 mg tabs and as much as I hate medication, I am going to take 5 mg in the a.m. and 5 m.g. in the P.M. Based on what I read in the posts, if I don't see any results in 7-10 days, then obviously this isn't going to work. If it does work, I'm going to print everything from the variouis Dex threads and the research thus far, out and see my Uro to see if he will continue the prescription.

I don't believe I will become addicted to this in seven days, so I'm not going to worry about it.

[justice4j]

Strobers,

I don't know how long you've been on Dex, but I've been on it sincd 7/17/08. It's the ONLY thing that brought me out of a long flare. I'm only 118 pounds and with my doctors supervision, we decided my dose is 20-30 mg. divided up like Nina said. The studies are with 20 mg. sustained release. Nina, fortunate person that she is, is being treated where there is an FDA DEX STUDY IN PROGRESS. Otherwise, it is really hard to get an RX for it.

IMHO and I'm not giving medical advice here but.....I'd find a psychiatrist in your area that will help you, or ask the ER doc that so kindly gave you an RX who he/she would recommend in that specialty. Take the studies, small as they are, in with you. Psychiatrists are the most familiar and unafraid of this medication because they use it frequently for ADD and narcolepsy. I could not get an RX any other way even though one of my docs kindly RXd me 180 10 mg. Valium for topical use on the strength of Dr. Brookoff's Q & A which you can find on the site.. So, it wasn't a matter of trust, just discomfort with the possible legalities.

I did feel some relief at about 36 hours, but I would say it was a full two weeks before I knew for sure it was going to work. Remember, we're all different and from what I've heard from Dr. Parsons, guys with IC have a little bit harder time, in general, getting IC managed. Sorry to say....they're less of you in the patient population - about 10%. Are you being seen at an IC regional center? If not, get thee to the nearest one....it will be worth it for at least one appointment. I drive 2 hours about 1-2 times per year to see Dr. Parsons in San Diego, CA. It's worth it.

Don't give up.....like I said, sometimes psychiatrists are a best source for Dex management b/c they are most familiar with it and can really get your dose dialed in for you. Uros, PCPs.....not as familiar and are actually "scared" of dex b/c it's a Schedule 2 - highly addictive drug - BE CAREFU!

My psychiatrist ran a viral lab panel - $910 unfortunately- that showed many of my titers WAAAAAY off the chart. He believes, and I now agree, that Dex fights these viruses.

WHAT I FIND TRULY SO INTERESTING IS THAT ANY IC PATIENT I'VE READ POSTS HERE ABOUT DEX DOESN"T GET HYPER! That really makes me think there's a big neurological connection yet to be discovered. Is it in neurotransmitters like norepinephrine, epinephrine, and dopamine???? Is it a faulty nerve pathway????? Who knows. But I really would like to know why all of us can tolerate Dex w/o hyperness.

We can't all have ADD or narcolepsy too! Anyone have any thoughts?

Strobers, hey man, good luck....I know what the I gotta always pee symptom is like and it is horribly nerve wracking......Here's hoping
the best for you and the soonest relief possible.

So sorry you're having that awful symptom.

[strobers]

Strobers,

I don't know how long you've been on Dex, but I've been on it sincd 7/17/08. It's the ONLY thing that brought me out of a long flare. I'm only 118 pounds and with my doctors supervision, we decided my dose is 20-30 mg. divided up like Nina said. The studies are with 20 mg. sustained release. Nina, fortunate person that she is, is being treated where there is an FDA DEX STUDY IN PROGRESS. Otherwise, it is really hard to get an RX for it.

IMHO and I'm not giving medical advice here but.....I'd find a psychiatrist in your area that will help you, or ask the ER doc that so kindly gave you an RX who he/she would recommend in that specialty. Take the studies, small as they are, in with you. Psychiatrists are the most familiar and unafraid of this medication because they use it frequently for ADD and narcolepsy. I could not get an RX any other way even though one of my docs kindly RXd me 180 10 mg. Valium for topical use on the strength of Dr. Brookoff's Q & A which you can find on the site.. So, it wasn't a matter of trust, just discomfort with the possible legalities.

I did feel some relief at about 36 hours, but I would say it was a full two weeks before I knew for sure it was going to work. Remember, we're all different and from what I've heard from Dr. Parsons, guys with IC have a little bit harder time, in general, getting IC managed. Sorry to say....they're less of you in the patient population - about 10%. Are you being seen at an IC regional center? If not, get thee to the nearest one....it will be worth it for at least one appointment. I drive 2 hours about 1-2 times per year to see Dr. Parsons in San Diego, CA. It's worth it.

Don't give up.....like I said, sometimes psychiatrists are a best source for Dex management b/c they are most familiar with it and can really get your dose dialed in for you. Uros, PCPs.....not as familiar and are actually "scared" of dex b/c it's a Schedule 2 - highly addictive drug - BE CAREFU!

My psychiatrist ran a viral lab panel - $910 unfortunately- that showed many of my titers WAAAAAY off the chart. He believes, and I now agree, that Dex fights these viruses.

WHAT I FIND TRULY SO INTERESTING IS THAT ANY IC PATIENT I'VE READ POSTS HERE ABOUT DEX DOESN"T GET HYPER! That really makes me think there's a big neurological connection yet to be discovered. Is it in neurotransmitters like norepinephrine, epinephrine, and dopamine???? Is it a faulty nerve pathway????? Who knows. But I really would like to know why all of us can tolerate Dex w/o hyperness.

We can't all have ADD or narcolepsy too! Anyone have any thoughts?

Strobers, hey man, good luck....I know what the I gotta always pee symptom is like and it is horribly nerve wracking......Here's hoping
the best for you and the soonest relief possible.

So sorry you're having that awful symptom.

Hi Janet, that viral panel you mentioned, can you please tell me exactly what it is called so I can have one done? I already have the Dex, but I agree it would be a good idea to have a psychiatrist support the treatment and it should be easier to find one since I already have the medication. I'm taking Valium at the moment and restarted the Elavil. It probably would not be smart at this point to introduce another drug; especially an amphetamine. I sent you a PM. Please answer when you get the chance.

Thank you.

S

[justice4j]

Strobers,
Glad you got the PM and hope that info helped a little.

I got home today and realized that I went SIX HOURS between bathroom visit!!!!!!!!! I wish I had some fairy dust to spread that around to everyone.

I hope you're having some good days. IMHO, if I were you, I would seek a psychiatrist or some other doctor to help you manage the Dex dose, and I would make that a priority over having any other tests, unless there's something that might be urgently needed. When/hopefully if you can get help with the Dex management, you can always have other testing done.

Just some advice, meant with all kindness, but getting that horrible pain managed will give you a boost and I would make that TOP PRIORITY #1.

I was offered Adderall and asked for the generic dex instead; I was afraid of the saccharate and aspartate in Adderall. Aspartate converts to aspartame in the digestive tract and that's an IC catastrophy waiting to happen pain wise. My psychiatrist, whom I see for medical management of Dex, believes that Aspartame causes brain cancer.

Maybe you could go to UCLA and see Dr. Raza or UCSD and see Dr. Parsons since you can't tolerate Elmiron. They may have some other options for you.

My quality of life is getting slowly but steadily better and I certainly give most of the credit to Dextroamphetamine sulfate. I am NOT going to discontinue Elmiron or any of my other needed meds, but this was certainly my magic bullet. I hope it or something else cost effective -$10 co-pay for Dex- will get you out of your flare.

Best Wishes,

[helpannie!]

i am trying to figure out if my add medicine had dex in the ingredients.
i am looking at my prescription here-

it says AMPHETAMINE TAB 30MG
generic for ADDERALL ORAL TABLETS 30MG

so i assume that the brand is "amphetamine"? i know that is what the pills are made of but there is no indication of a brand label for me to read/study upon.

do all amphetamine tablets have dex already in them?
i split up a 30mg tablet into 4 quarters and take it throughout the day.

i already take amatriptalin 50mg for anxiety at night- low dose of amphetamine for ADD- zolpidom 10 mg at night to help me sleep-
amatriptalin was originally used to help me sleep and help with anxiety, i didn't think i needed it anymore so i slowly weened myself out. that was a very bad idea, i felt socially inept for about 4 days and decided to take it again. i felt back to normal in no time. it was a bizarre experience.

[ngazerro]

Annie,

I believe adderall has other things in it. I take 5mg of Dextroamphetamine sulfate a day or sometimes twice a day. I have been on it for almost two years with great results..

Hope that helped,
Nina

[lyse3]

I have just started Dex treatment and also have the constant feeling of needing to urinate, right after I just finished doing it, up to 30 times in one night. I also am still having worse pain than before I started taking the Dex, so I don't know if I can stand to stay on it for a full week. Also have intense headache. Maybe certain forms of I.C. just don't respond to it. did you ever find anything that did help? I am considering the Fentanyl patch now, as I am having to take so much hydrocodone now to get the relief I once got from a 5 mg tablet, that I am now up to 8 or so 10 mg tablets per 24 hours.

[ngazerro]

The dextro might not work for everyone. I have great results but we are all so different..

[lyse3]

I seem not to be getting a good response to Dex, which I realize may be the case for a lot of us, while some do get a good response. I noticed that the two women in the study that was published had some sort of edema and fluid retention problem. Did you have any fluid situation like that? I guess there may be a lot of factors that affect how it works for people but that seemed to be one thing that the study patients had that I definitely dont have. thanks. trying to wait a little before I give up on it.