New thread for me - starting dex

[purpleviolet]

Hi all,

Well - herbalist me was floored when I went to the uro and said what about this - showing her that 2 person study on dex and that a few people I've read about here respond to this drug - yes I was floored when she handed me the prescription (last year my primary doctor and the urologist's nurse practioner couldn't/wouldn't of course - but the nurse should have asked the urologist). Anyway the urologist did! So I have the prescription and in 2 days I'm going to start - a very little bit (I plan to break the 5 mg tablet into a quarter). I am scared about this drug - addiction or too stimulating etc. So this is going to be a trial and I will report back my progress on this thread. Now my IC is so variable so it will be hard for me to make an immediate assessment. A few days ago, I felt eerily OK with just diminished volume (that is always there) and then whamo a flare crept up which for me is pain either in the urethra or bladder sort of like a knot or like someone kicked me. It is not all out burning like some IC'ers describe. Then I took my flare resort meds - prosed/ds and valium at night and tylenol to get through. So it has eased up and now I stopped the prosed and valium and I am going to wait for all the blue pee from the prosed to stop which takes a few days. Then I'll start the dex. I'll let you all know. PV:bunny:

[SharonA]

Start a journal and write down how you are feeling right now. Then wrote in the journal every day. Include food that you eat, symptoms you are feeling, dosage level...that sort of thing. That way you have something to compare with every dose. I am giving you a link to a pain and voiding journal as an example. It may not be right for this, but it might possibly give you an idea as to what to do with a journal. I hope this med works for you. :)

Here is the link to the journal:
http://www.ic-network.com/handbook/voidpain.html

[purpleviolet]

Sharon - Great idea to keep a journal. Wish I had one now. Quite a few years ago I did keep one for a few days - not on what I ate, but on how I felt and voided, etc. So anyway I will start one and see what happens. I say I get a bad flare about once every week or two that lasts a day or two or three and then after I recover I slip up and I usually break down and drink something no no, like a sample of coffee from trader joe's because I feel OK. Several slip ups then set me back. I'm not one for will power. I feel so deprived sometimes that I just say I deserve to have this, etc. I see everbody else having that morning cup of coffee, a glass of wine or a pint of beer or a movie with a lot of sex, and I get bummed. But there are those worse and the universe is an eternity so I got to keep my perspective. I'm going to my appointment with a laser acupuncturist who hasn't helped yet, but the laser - he just points at my belly button (where my bladder isn't) - because he says that's where my meridian is that needs balancing, but I feel nothing. Somehow I think after I start the dex if I feel any better or worse it will be the dex and not this seemingly bocus treatment. Anyway, a journal is great idea. Thanks PV

[purpleviolet]

Well for 2 days I took no more than 5 mg a day and my bladder felt "chemically" and body felt weird. Then I got this ouchy swollen gland thing in my neck ( I had it a month or so ago with a bad sinus cold, too) so anyway I stopped the dex. Now I'm starting again since my sore glands are better (I even checked at the dentist for this jaw ache I've been having, thinking arthritis in the jaw or TMJ, and after I got my teeth cleaned the gland acted up and I felt wiped out so I took oil of oregano for infection) . My bladder pain level this morning is about a 3/4 which is typical for me, so I'll see where it goes. I did do a journal for 2 days on the dex and it showed me getting worse, but that is not long enough to see if something is going to work. Any recommendations on how long to try this drug for? PV

[purpleviolet]

I tried dex again for 2 days and now I'm in a huge flare that has lasted several days. Bummed

[ngazerro]

I have been on the dex for about a year and a half. I do not have any problems with my bladder except when I get an infection. It has been a wonderful med for me. I still take 5mg twice a day, and on some days 5mg only. I have little flares but nothing compared to the pain I use to have. I exercise 4 days a week and I am able to do all the things that IC stopped me from doing...

Nina

[aprilrhumphreys]

I have been on Dex for about 3 months. It has worked great. The original doc who prescribed it to me was married into the family. It worked great. Before taking Dex, I was tired sleep all the time would lay in bed for days and just about everything I put in my mouth caused a flare even wearing jeans! However, within the first month he divorced out of the family. Well, when I went back in to get my prescription he did not want to give it. Therefore, I was left off of it for about 3 days and all symptoms returned full force! I started looking for a new doc. Found one who gave me 2 weeks worth until I could get into a new Uro doc in our area. About 2-3 days after restarting all symptoms disappeared. The Uro doc had heard of Dex but never used it. He was excited that I come in and he would get to experiment with it. He told me that when you find something that works "don't rock the boat". He said if it works now you may go off of it and it never work again. He suggested not to stop dex or miss doses. I hope this helps and you have not given up because I am hear to tell you- My life is sooo different now! I can even have a beer socially with my friends may only be 1 or 2 but it is nice! I follow ic diet very very loosely now. Hey I ate spaghetti last night!

[helpannie!]

purpleviolet- i live in bellingham so it is nice to have someone close to home. perhaps down the way, i will like some advice on where to go for treatment. i do not think there are any IC specialists in whatcom county... seattle is more of a city with larger options.

[Goodnightmoon]

Sorry, but I never heard about this... what is Dex? A painreliefer??

[purpleviolet]

I go to the UW urology clinic - Jane Miller (doc) and Jean Kalhoff - the nurse practictioner - they are very nice but very busy and also they will not prescribe anything to give you in the office, like an instillation, that comes from anything other than their pharmacy so they really don't know much about alternative medicine, but they are very understanding and will listen. I was surprised that they never heard of the IC belly, but other than that they know the score at least with the mainstream IC thinking.
I also saw Dr. Jacoby a little further north in Seattle for a trial on a medicine (she does a lot of trials I think) and a young Dr. Bradley but she also moved north so maybe you could look up these docs because they may be closer to you. I wish good luck in the search...
DEX is an amphetamine and it speeds you up and makes your nervous system more awake so could be bad for some IC but apparently it helps some people maybe because of the sulphate (?) in it - not sure about that or maybe because it helps with edema? or maybe something with the nervous system but anyway the UW docs were open enough to let me try. It is a controlled substance. I'm really trying some alternative things now so if that doesn't work I'll be back to the docs! Take care.

[helpannie!]

i do take a stimulant now for add, it is generic adderall and from what i read, sounds like dex is quite similar. i called the dr i go to now to try and find out if the medicine i take already has dex in it. of course, the nurse never called me back... it is an office that goes off a sliding scale, they get all types of people in there and dnt take patients seriously.
i am having a much better day today. i didn't drink my morning banana-oj-kiwi smoothie that i like to make. i had yogurt with mochi. i also had a bowl of long grain rice for dinner, is rice okay?
i drank only water, no iced tea :-( i still have a huge amount of sun tea i made just staring at me when i open my fridge (it is an herbal blend with zinger and i read that can be bad).
anyways~ no severe pain so that makes me smile.

[lyse3]

I just happened to read about some success that some patients are having with dextroamphetamine sulfate, and my gynecologist/pelvic pain doctor is allowing me to try a course of it. The first day I took 10 mg at 6:30 PM, and ended up awake all night, which didn't bother me as much as the fact that I had worse pain than before I took the dex, and I must have had to go urinate about 30 times that night. Normally I only go 4 or 5 times. I also take Lortabs 10/500 for pain, and had to take some of those even two at a time to finally get some relief from the pain. I am wondering if it takes a week or so of taking the recommended 20 mg before pain relief sets in, or if maybe I am one of those people who just don't get relief with dex. I had more energy and somewhat imroved mood, but quite a bit of pain and constant feeling of needing to urinate, even when I just finished. Whenever I don't eat food about every four hours my body goes into some kind of state where some ketones are released into my urine, which really causes me extreme pain. I am wondering if maybe I failed to eat enough and the pain is from the ketones. I surely hope so, because I would like so much for this drug to help me. Several people seemed to get really good results from it. I don't have any edema problems that I know of. It surprised me also because I thought Dexedrine caused urinary retention rather than excessive urination. does anyone have a suggested dosage schedule that seemed to work for them that I could try? Or have others tried this drug and gotten more pain rather than less. Thank you.

[purpleviolet]

The few dex I took caused pain so I stopped it but I may revisit them again some day. Since IC is caused by different things, this is not surprising. The study that was published only involved 2 people and they both had some sort of edema. I would think dex is a diuretic and would cause them to pee which maybe reduced edema which maybe helped them (pure speculation)? To get to the ketone state you have to not eat any carbs like the Atkins diet. Guess what - when I tried the Atlins diet my IC was OK even though my pee showed ketones which are acidic. I was not eating fruit which can cause the pee to be too alkaline and that can be irritating, too. GO figure!

[lyse3]

I wondered about the diuretic effect of Dex also, and called my pharmacist about it, but she said that she is not aware of it having that effect, so I am guessing that something else caused the constant urge to urinate during that first night after I took the Dex. I also had worse pain than ever, especially in my urethra, so I am thinking maybe this drug just won't work for me. I did notice that the two women in the study had edema, but other people who have posted on here who said they got great results with Dex did not mention having edema as a problem. I know that there are many causes of I.C., and maybe mine is just one that is not affected by Dex. I also got no relief from Elmiron or Interstim implantation. I read in one of the articles that something in Dex works on the trigone nerves of the bladder and the urethral nerves of the bladder, but in that article they were speculating that it helped calm pain messages from those areas. In my case it seemed to aggravate them instead. Or maybe because I didn't take the full 20 mg per day dose. But I am a little afraid to do that since I had so much pain and increased urination on just 10 mg, plus a blinding headache. I think I might not be able to tolerate the side effects even if it did start to relieve my bladder pain. I should have known that if it were a sure-fire help there would be hundreds of posts about success with it, and the IC organizations would be spreading the word about it. And that doesn't seem to be the case. I am not denying that it is obviously working for some patients and that is great. I am just disappointed because I thought maybe this might be an answer for me. It also gave me more energy, which I definitely need, and some help with depression, since my son was recently run over at a red light by someone who ran the red light, and is now paralyzed from mid chest down, and has only one arm that is not damaged. He is only 39 years old, and everything in his life was finally looking up, because he had recovered from a similar severe accident 15 years ago, only to have this happen. I know everyone has problems, and some worse than mine, but this seems like something I can't seem to stop grieving over. I can't understand what possible reason something like this could happen in a universe ruled by a loving God, but maybe no one is in charge and everything is just random and uncontrolled. Either way this is so hard to stand. I would so rather it happened to me than to him, but we don't get those options. Thanks for letting me vent about that. If anyone had a similar experience with Dex, in which they initially had pain, but stuck with it a week and then got relief, would you please let me know. Thank you. my email is lmagness@hotmail.com