Updates?

[ngazerro]

For those trying the dextro, I was wondering how everyone is doing? I have not seen any post lately. Hopefully everyone is pain free and busy!!:smile tee

:pray:

[lmq78]

Hmmm...I am also curious. It has been so quiet lately. Hopefully, it is because everyone is symptom free and staying busy. I hope they come on soon and update us because I am still thinking of trying this drug.

[ngazerro]

Mothergoose,

I am glad to hear you are having positive results. My results got better the longer I was on the dextro. I think it was because it did not cause retention and over a period of time that improved my bladder. I have the kidney pain also. I use to take topamax for that. I still have it so times, the dextro did not make it go all away. It is a dull ache that most of the time I block out when I do get it.

Sorry to hear you have an UTI. Hopefully it will clear up fast. Since I have been on dextro sex has been a lot better. I don't flare afterwards or hurt during.

I am glad to hear you almost feel like your old self again. It has been the only thing that has made me feel almost normal again. That is why I was so excited to share with everyone.

:woohoo::woohoo:

I hope it only gets better for you..:smile tee

[justice4j]

Re: Gig and Dex

---------------------------------------------------------------------------Hi Everyone,-----

I was doing well until some kind of virus hit me. It started at the gig with my right back at the waist level hurting. That was Sat. night....

Monday, I ate half a bagel and urped. Since it was only 45 min. b/f my first student, I couldn't call in. I spiked a fever of 102.8 Tues. that only went down to 102.6 by Tues.@ 2:30PM, so I called in sick for Wed - Today.

I was shaking like crazy like someone with a neurological disease and just soaked my sheets from cold sweats..
My normal temp runs around 98 since I'm hypothyroid.

I just upped the Dex to 5 mg. today and haven't urped anymore, so the Dex is not it. IN TWO HOURS, IT STOPPED THE FREQUENCY! I FIGURED I'd TRY THIS WHEN I WAS AT HOME AN HAD NO APPPOINTMENTS AND TO SEE IF THAT WAS THE CAUSE OF THIS REACTION. NO WAY!

There's a place on you back called the costal vertebral angle where doctor's tap if they suspect a kidney infection. That hurt Mon., but not today - Wed. and I pounded the area pretty hard. I think it's a very awful virus, but my temp broke to 99.8, so I don't think it's a kidney infection. They don't break w/o antibiotics to my knowledge. That area began to get sore near the end of the gig b/c it was 11:30 PM or so by then and the front door was open blowing cool air into the house.

I ache all over, have a h/a, joint aches - all the signs of a virus. I haven't been exposed to anyone that I know of that has had this.???

Do you have any reaction like this? I'm thinking not. I think the virus is the red herring. Has anyone in another part of the country (other than SoCal) heard of a virus "going around?"


Like July PMd me, I also went off Elavil 10 mg. with my psychi's approval. I was only on it about 20-23 days and have been off for 8 days now.

I just can't stay sitting up for very long. I'm still very fatiqued and ache worse than anything I can remember.... Does not make sense....


Maybe the gig was just too much to soon...with my somewhat weakened state with such low iron leve..even though it's one of the best gigs I've ever had and so enjoyable.

As soon as I am well enough, I'm buying a piano bench pad and it's going to every gig where people have their own piano. I appreciate my artist bench that has about 5-6 inches of padding and height adjusts; I didn't realize how much.

I'm going to raise the Dex to 5mg Am and 5 mg. 12 N probably on Fri. when I have a stretch of days with nothing that I have to do.

Anyone's input is welcome and appreciated.

Thanks!

[justice4j]

MG,
I'm so glad you are better! It's so enoucouraging to hear stories like yours and Nina's.

I still wonder how Michelle is....like many of us. I even called her doc's office and asked that they send her a message that we are interested in how she's doing. I kind of have a "detective" mind and I figured out who her doc was and just said we were all concerned. I so hope she's okay, but they might not have even given her the message due to the HIPPA privacy thing. For that reason, I told them that I understood that they couldn't legally acknowledge that she was their patient but Sam had told me in a PM early in her Dex treatment and that we were hoping she was okay.:confused:

Hugs to Everyone, and Wishes for Speedy Recovery.

[camackin]

Hi there,

Well, it's been 2 weeks now and it's been up and down. I've had a couple days where I had almost no pain at all (like around a 1 out of 10). Then I have my medium days which are better than my mediums used to be, but still pain and pain in kidney too (anywhere from 4 - 8 out of 10, but used to be between a 5 - 9 out of 10 daily). I haven't had one of those really bad days since on this med.

I did have some slip up with my diet the first week and I think that made the results not as noticeable. Also on Friday I was supposed to change my birth control patch and forgot until Sunday - so I got my period by mistake and major cramping/bladder pain combo for a couple of days.

I think with out the diet slip ups and patch mistake I would have felt a lot better. Unfortunately I'm not 100% better like I imagined would happen =), but I am able to be a little more active - have a lot more energy - and in not so much pain. I'm still taking from 5 - 7.5mg oxycodone per day, but that's down from 10 - 20mg so that's good. And when I do take it, it gets rid of the pain more completely. Still haven't been able to have sex =(.

I just went to my dr yesterday and got the rx uped to 15mg a day (10 in the morning and 5 at 2pm to spread out the effects, I haven't had too much trouble sleeping so yay).

I just started the 15mg today so we'll see if I get even better - hopefully.

[justice4j]

CA,

Like with lots of meds, it takes some tweaking to get everything just right and a doctor that listens is so important - sounds like you have a good one.

The Dex studies were with 20 mg. Look for posts by Charisse, BBB, and NGazerro and you might find the articles. I have a terrible flu virus something or other or I'd look it up for you....

[camackin]

hey, yeah i saw those abstracts. my doctor and i said we'd go up to 20mg if needed, but no higher. i report back to her in another 2 weeks! crossing my fingers 15 is the key....

[camackin]

J - oh! i just read your post i guess we were writing at the same. I'm sorry you were so sick! i hope you are starting to feel better.

[ngazerro]

Janet,

Sorry you are sick!! hopefuly it will pass. I had some kind of flu bug about three weeks ago. I was sick to my stomach too. I felt better after about four days. During that time I did not take my dextro. When I did start it back I felt better. Hope it passes soon!!

Hugs
Nina

[justice4j]

Tried to reply to your PM, and your box is FULL.

I'm continuing the Dex. It doesn't seem to be bothering this wretched flu. Man...my fever went as high as 103.8 w/an old fashioned glass therm

I have a really bad h/a and muscle aches....... This thing is beaint me up!

I have no pain over my kidneys ( I know how to check for it) and as I thought, there's a loop of bowel that is distended. :) This needs to go away. NOW.:help:

[Wolfe]

Janet, so sorry you are sick. You sound very "flu-like." I'm wondering if the dex will help with the IBS in the long run?

MotherGoose and everyone else, I am just ASTOUNDED at your improvement in symptoms. I see my psych Friday. We are going to increase my imipramine (still doing very well on it!) and I'm going off the Abilify, start to wean off the Ambien.

HOWEVER, if I am mentioning the dex again (I gave him printouts last time) because if I have my usual Fibro/IC/IBS crash in the fall, I want to try the dex. I do NOT want to have another winter like the last 2 have been. Any improvement is good improvement to me.

Yea! for all of you! :woohoo:

[ngazerro]

Janet,

Sorry, I cleaned out my box. I hope you feel better. With the fever it sounds like to did pick up some kind of bug. You need to go to your doctor if your not feeling better today. Make sure you are getting enough fluids. I hate when I come down with something. It takes longer for our bodies to heal and it makes all other illnesses go out of whack. When I got the stomach flu about four weeks ago, my fibro went crazy and a week later when I started to feel better from the flu , my IC decided to go in it's first flare in 8 months. I still think it was the massive amounts of watermelon I was eating.:tsk: I don't think I would have had such a bad IC reaction, if I didn't just recover from stomach flu.

Get better and take care of yourself!:grouphug:
It sucks being sick!!:rant:

Lots of hugs,
Nina

[ngazerro]

Wolfe,

I know what you mean about the winters! With fibro they are hard. I also have raynauds, which is double whammy!! I started the dextr in Jan 2008, and it did help with the winter. It did not help with my raynauds, but it helped with the fibro. The dextro is not great for my raynauds, but I take such a low dose we decided it was not effecting it. I also had to make sure my vit. D levels are good in the winter. It helps with the fibro also. Just being able to exercise made my winter better. I hope you find something that works!!:smile tee

[ngazerro]

camackin,

Glad to hear it is helping you!!:woohoo::woohoo:

[sandymarie]

If you don't mind telling me. I didn't see where anyone of you are on any strong pain meds. I just wondered because I am non a lot of med and wondered if it would hurt with all the other meds..I take. Also what mg. do you ask for to start out on. Has it helped anyone that is with severe ic and fibro for a long, long, time. I hope it helps all of you. I would just give anything that will help me to take less pain medication.


JJ:pray:

[ngazerro]

Sandy,

I too have severe IC and Fibro. I used to be on about 16 pills a day. Now I take three. The strongest med I have ever been on for IC pain was percets or loratabs. I don't take either anymore. I use to also take: Topamax, ultram, cymbalta, Elimeron, zanaflex, and tried many more. I would talk to your doctor to see if it is an option for you. I started on a very low dose of 5mg twice a day. :)

[justice4j]

Nina, Mothergoose and July,
As you know, my family lives in Louisville, KY. It is known to be one of the worst places for allergies. I wonder if that could have anything to do with the fibro and Raynauds getting worse in the fall? Salem has lots of plants too. Maybe fall is the worst allergy season in Salem as well.

I had allergy shots and that was the WORST thing I ever did. I had just been dxd with asthma. 8 months later, was when IC started being more of a PITA. I wish I had known.....Dr. Parsons said for sure that had made me much worse.

But, tomorrow after I get my guy off to LAX for a gig in Texas in McCallen, I'm going to the doctor as soon as I can get an appointment, then I'm going to go up to 5mg. Dex @ maybe 8 AM and another 5mg. @ 12N.

Nina, is that about how you dose yours? What's the lastest in the day that you take it? I've been having a little more U & F........with this bug bug.....then it settles down...and comes back etc. I'm trying to keep hydrated, but I'm not peeing very much but drinking lots.

I am really looking forward tomorrow to raising the dose. If I don't tolerate the extra 5 mg., I can always decrease it to 2.5mg. for a little while.

Wish me luck....LAX is a bear when you feel good...

Hugs,

[ngazerro]

Janet,

Your right about allergies in louisviile. I have only lived here for about five years. Everyone tells me if you don't already have them you will. You can tell when the seasons change, my uro's office get really busy. It's funny because my NP would tell me everyone was in for a instill for their bladder. Fall last year was a killer for me. I stayed sick all the way to winter. Starting the dextro change it for me. Hopefully the dextro will pull me right through it, because I love the fall, and love to be outside. I was on the dextro this spring and did really good. My raynauds get bad at the slightest temp change that is cooler.:cussing:Even in the air condition in the summer it acts up. It has been doing better though. I feel the fibro & raynauds more on rainy days. I am sure everyone can relate to that.

The lastest that I have ever taken the dextro was around 4:00. I don't do it very often. I have started to take it a little latter in the day. Most of the time I just forget and end up taking it around 1:00 or 2:00. I like to be in bed by 9:30 or 10:00. I get up early, except on weekends I get to sleep in.

Get better!!

Hugs:smile tee

[lmq78]

I am glad to see there are doctors out there that will let their patients try this drug. I have asked 3 doctors, and talked to my Uro today and it always NO WAY!!! My Uro said Elmiron is the only way I will get better. It is making my hair so thin, but I will keep on it even if I wear a wig. I have run out of time running to doctors, because it is back to teaching for me on Monday. I hope I can make it through the day because all the drugs make me a zombie.

[lmq78]

Quick question. Along with the IC, I feel like I have retention issues. Well that was actually confirmed today with my Uro. He gave me flomax. Anyways, did the Dextro help with this? My husband is on Adderall and he told me that he often has problems urinating with this medication. Just curious, if this was one of your symptoms with IC. Thanks for all of your information.

[justice4j]

She's a wealth of info about avoiding retention. Also, I found out that Adderall has saccharate and aspartate in it. They're salts that help the amphetamine be sustaine release....something like that. Aspartate breaks down chemically to ASPARTAMINE! BLADDER DEATH for me! I take Dextrostat and wanted that instead in case I had a reaction it would not last as long.

HUGS

[camackin]

so i upped my dose to 15mg 3 days ago and it seems to be working better. yesterday and the day before my pain was about 1 or 2 out of 10 and sometimes no pain at all :smile tee
today not so great about a 4 to 5 but i think it may be because i took a multivitamin last night and it had vitamin C in it. just wanted to test if i could take them but guess not. still that's a waaaay better pain level than normal and yesterday i didn't have to take any pain meds. today i will prob take 5mg oxycodone which is still way less than normal. i've stopped my elavil/amatriptyline and i'm still taking a reactine daily. so far so good so i think i will stay on the 15mg for a while and see how i go. not to stoked about having to take any more than 15 so i hope this is the ticket. seems to be good so far!

[justice4j]

Could I ask all of you to respond?
Have any of you had an INCREASE in IBS symptoms since beginning Dex? That is a listed side effect....I am:pray: it isn't Dex. With IBS wigging out with the recent flu I had last week, it is hard to decipher everything:help:

PS I called a local large ER and they are seeing young children with voming, diarrhea, and high fevers.

Now, as of Friday night, I cannot get IBS to settle down. The problems had been intermittent enough I managed to teach a few students Thurs. I weighed 124 with jeans on 7/15. Today, I weight 116 and I can keep virtually nothing "down."

Imodium, Lomotil have not worked. I'm going to try Kaopectate since it has been 1 hour since the L. The flu knocked IBS into massive over drive. I guess the only thing I can do is get off Dex and see if it stops. I still would like to find something to counter it. Saturday, I took my first 5 & 5 doses after previously taking 5 only once and had no pain and a body/mind calmness I don't think I've ever had before.:help:

I'm trying to stay calm, but I am so hoping I don't have to give up a miracle.

[Wolfe]

Janet, of course I don't have experience with dex but if you've been fighting a bug, your IBS is likely to be in overdrive for awhile, and the dex probably had nothing to do with it. I DO have experience with IBS. Anything that causes an upset in normal people causes a disaster in me. So if something is going around and you got a touch of it, I suspect your gut is really letting you have it.

You can back down on the dex just to be sure, but I have a strong feeling that isn't it.

All of you on the dex who are feeling better: Things that hurt before are still going to hurt now, even if you don't feel it, right? Like vitamins are the devil incarnate, as well as coffee, etc. I get to feeling good on my Elmiron and get daring, but I know those things are still going to make the IC worse, right? Please don't anyone hurt themselves. (My husband tells me this all the time with the Fibro: Sit down before you fall down! We get so excited when we feel better.)

[ngazerro]

Janet,

I tend to agree with Wolfe, I think it has more to do with the virus you have then the dextro. When a got a stomach virus it did the same thing. It just threw my whole body out of whack. I even had a flare for the first time. I would ask your doctor to see what they think. Maybe give yourself a couple days off of until you get your back to normal. The dextro has never made my IBS worse. It has made it better.

Wolfe-Your right, you still do have IC even if the dextro helps alot. Vitamins still do bother my bladder. I can drink coffee, but maybe twice a week. I try not to over do anything.

[camackin]

i know i still have that really bad stubborn habit of thinking 'why can't i just try a bite of this...?' testing out my boundaries. most of the time it doesn't work out but there's that once in a while that it does, like i found out i can eat a bit of banana recently, so it makes me want to test other things. but really it's more sensible to just stop that altogether. but even when i eat really safe foods i do get some stomach cramps and bladder pain, seems like about 10 - 15 mins after i eat that go away relatively quickly.

as far as IBS, i'm not diagnosed but have some symptoms. i did find that i have a bit more cramping lately but don't know if it's dex-related.

[justice4j]

MG,

Wow! I have an appointment with a local PCP Fri. and I'm going to take this info in. I don't respond that well to antispasmodics or fiber therapy. It sure sounds like a simple solution. I wonder if I dare try digestive enzymes...and I wonder if I might have this syndrome. Thank you for a very informative post after a really rough day today.

I had awful care at an urgi care in Yorba Linda. When I first arrived, I quietly let the receptionist know that the Big D had gotten out of control, I was having accidents and needed to be near the bathroom. She just told me where the BR was!. I was hoping she would have someone put me in a room near the bathroom. I mean I gave her enough info that she should have been worried for the carpet and concerned that the patient -mois- not live through a horribly embarrassing moment.

When I was an ER nurse if there had been any room open and a patient presented with that complaint, we would have taken that patient back and if there weren't a room available, at least given them a chair in the hall near the bathroom. That didn't happen. I waited 20 minutes to be put in a room. and there was only a mom and 2 kids in the waiting room when I arrived.

Finally the MA took me back. The MA was a guy and really nice so I thought okay, this urgi care is affiliated with hospital bla bla on the hill 10 miles away. Hospital bla bla has a good reputation so this should be fine. NOT. I got a PA who didn't know what she was doing except to bereat me about having no local PCP at every possible opportunity. Her dx? Bacterial infection. I have no fever! She didn't even do a guiac for hidden blood. That is standard procedure with Big D 10 X per day and weight loss of 8 pounds in 12 days.

I have a very organized word document with all dxs and related Rx. She walked in the room WITH IT IN HER HAND and her first ? was, "Do you take any medications?" :confused: I couldn't help frowning in astonishment. I asked, "Did you not read the list of medications you have in your hand?" "No." I just shook my head. :rolleyes: I could go on and on. I wish I had asked where she had gone to PA school. I did weedle 30 Lomotil out of her and she went on in her customary condescending way to advise me to not take Lomotil more than 1 every 6 hrs. I told her the usual dose is 1-2 every 4 hrs. I should have just shut up, but I was in no mood for any more condescending lectures. Oh no...you have a bacterial infection bla bla bla
She proceeds to tell me that she is Rxing an antibiotic! DEATH to my gut

Another phone call I have to make....I am wondering what has happened to medical care since I've left nursing??

Oh......the icing....I finally have the Rxs for an antibiotic and Lomotil in hand and I notice the Lomotil RX has NO SIGNATURE! Where was that woman's head?:rant:

[lmq78]

Wow, Mothergoose! I hope this is an answer for your son. As a mother, I know how difficult it must be to see your son suffer. I hope he gets well soon.

[Mothergoose]

Thanks for the vote of confidance.

[ngazerro]

I am too glad they are running more test. I can't believe the gasto acted like that. It is such ashame that we have to fight so hard to find out what is going on with our bodies. Don't give up! I pray you and your son gets answers son. Good Luck and Many :pray::pray: for you!!

[Mothergoose]

thanks i am really hopping this works for him, meds didn't make it today I am sure the pharmacy had to order it in and there was abad accident so road it close.

[snowgirl]

MG,

Wow! I have an appointment with a local PCP Fri. and I'm going to take this info in. I don't respond that well to antispasmodics or fiber therapy. It sure sounds like a simple solution. I wonder if I dare try digestive enzymes...and I wonder if I might have this syndrome. Thank you for a very informative post after a really rough day today.

I had awful care at an urgi care in Yorba Linda. When I first arrived, I quietly let the receptionist know that the Big D had gotten out of control, I was having accidents and needed to be near the bathroom. She just told me where the BR was!. I was hoping she would have someone put me in a room near the bathroom. I mean I gave her enough info that she should have been worried for the carpet and concerned that the patient -mois- not live through a horribly embarrassing moment.

When I was an ER nurse if there had been any room open and a patient presented with that complaint, we would have taken that patient back and if there weren't a room available, at least given them a chair in the hall near the bathroom. That didn't happen. I waited 20 minutes to be put in a room. and there was only a mom and 2 kids in the waiting room when I arrived.

Finally the MA took me back. The MA was a guy and really nice so I thought okay, this urgi care is affiliated with hospital bla bla on the hill 10 miles away. Hospital bla bla has a good reputation so this should be fine. NOT. I got a PA who didn't know what she was doing except to bereat me about having no local PCP at every possible opportunity. Her dx? Bacterial infection. I have no fever! She didn't even do a guiac for hidden blood. That is standard procedure with Big D 10 X per day and weight loss of 8 pounds in 12 days.

I have a very organized word document with all dxs and related Rx. She walked in the room WITH IT IN HER HAND and her first ? was, "Do you take any medications?" :confused: I couldn't help frowning in astonishment. I asked, "Did you not read the list of medications you have in your hand?" "No." I just shook my head. :rolleyes: I could go on and on. I wish I had asked where she had gone to PA school. I did weedle 30 Lomotil out of her and she went on in her customary condescending way to advise me to not take Lomotil more than 1 every 6 hrs. I told her the usual dose is 1-2 every 4 hrs. I should have just shut up, but I was in no mood for any more condescending lectures. Oh no...you have a bacterial infection bla bla bla
She proceeds to tell me that she is Rxing an antibiotic! DEATH to my gut

Another phone call I have to make....I am wondering what has happened to medical care since I've left nursing??

Oh......the icing....I finally have the Rxs for an antibiotic and Lomotil in hand and I notice the Lomotil RX has NO SIGNATURE! Where was that woman's head?:rant:

where is her head how did she make it through pa school let alone pass the Pa board? Sorry still a very big advocate of nurse practioners. VN

[samandmichelle]

I know its been a while since we posted, but we have been busy. I am still pain free :woohoo:... I can go off the diet and still no pain. I can't eat fruit still or high copper foods or I am running to the restroom 18+ times a day. I see the dr for my first refill tomorrow and am not changing the dosage. I seem to have adjusted to the zombie effect and am no more that way at night. We will try to make more time and keep everyone updated.

[lmq78]

I was wondering what happened to you! I was guessing you were feeling great and staying busy. Thanks for the update.

[Mothergoose]

Glad hear things are good. Summer is a busy time and after feeling so lousy for so long you are bound to have lots of things you want to do.

[ngazerro]

samandmichelle,

That is so awesome!!I am so happy for you. The longer I was on the dextro the better my bladder got! Hopefully you will have the same results. Enjoy your summer!!:smile tee

[ddscrazy]

Janet,

Sorry to hear you have ben feeling so awful lately.Hope you are better soon!!I seems to be we take so many risks with the medical profession now days,it seems to be the luck of the draw with who you come out with.I have had really bad experience's as well with the walk ins around our areas.Always do better going to the ER but Hoag is always so busy and the waiting is usually 2-4hours so if you have a bathroom issue it would be scary.

Sounds like you were doing really well with the Dex,I want to bring the articles to my Dr.they just seem to be stuck in the Elmiron and instill mode.I have my first P.T. appt. on Thurs.am alittle scared that it will leave me with more burning and I have to work all day Friday driving cars so wish me luck.

Please let us know how you are doing I woulg love to lose weight that quick but not by being so sick,so sorry.

Take Care let me know if I can help in anyway i am not that far from you,or e-mail me you have my address!!

Hugs get better soon!!
Diana

[Elle]

Diana,

What articles are you talking about? I'd also love to take some stuff to my Dr. Do you happen to have any links? Thanks so much for your help! I'm actually really excited about trying something that potentially works! :)

[ddscrazy]

Hi Elle,

If you send a reply to j56 I believe she has all the links to the articles. not quite sure.I am new to these forums but she has been here since it first began.If it wasn't for people like her we wouldn't be where we are with trying new meds for our illness.So sad that we have to take health into our own hands instead of the Dr.'s working with us.Always feel like I am getting nowhere with is and just getting worse.

Good luck,so hard to stay positive for our families just want to give up somtimes am not a believer in alot of meds so I just try to take Elmiron and a sleeping pill at night.Sometimes take an Ativan, but don't take anything for pain.Doctor hasn't given me anything.Sorry usually I am so strong never cry,but this is really getting to me.

Thank you for letting me vent.Can't breathe from the crying, you are all so wonderful.Hugs to all.

Diana

[lmq78]

It sounds like you are having a rough night. I have been there a few times in the past few months. It is so hard to stay positive in times like this. I have cried so hard that my husband called my mother looking for advice. I wish there was a magic pill to take away all the pain. I am trying my best to stay on the Elmiron, but I have the horrible side effect of hair loss. Every day I battle the thought of going bald or dealing with this horrible bladder pressure. I hope that we all find relief soon. I hope you are safe from the earthquake earlier.

[camackin]

Dear Elle,

copied from another post on dex...

Here are the 2 abstracts that seem the most relevant to me. If anyone has any other articles can they post them too?
**********************************************************
Abstract #1 from The Clinical and Experimental Obstetrics & Gynecology Journal Issue 32. here is a link to the abstract online. http://www.ncbi.nlm.nih.gov/pubmed/16440825

(or you can search using part of the article name on google if the link doesn't work = "A novel highly effective treatment of interstitial cystitis causing chronic pelvic pain of bladder origin: case reports")

*********************************************************
Abstract #2 from The Medical Hypothesis Journal Issue 70
http://www.sciencedirect.com/science...e642b124ad4c2a

if that doesn't work you can go to www.sciencedirect.com and search J.H. Check under the author search field. the article name is
A disorder of sympathomimetic amines leading to increased vascular permeability may be the etiologic factor in various treatment refractory health problems in women

[Elle]

Thanks for sending them! I really do appreciate it!

[justice4j]

I'm sorry for those of you going through H*** with this crazy disease.

It took about a week to get fully recovered from the Viral Gastroenteritis the so called PA diagnosed as Bacterial Gastroenteritis - w/o a CBC, sed rate, stool culture or guiac for occult blood. I had better care from the MA - he was really personable. She had the bedside manner and knowledge of a toad. Vicky, I too wish she had been an NP.

Believe me, I phoned the head of patient complaints at the hospital that oversees this urgi care and I complained long and loud to the first person who took the call. she ENCOURAGED me to phone the top person in this department. I informed her of all of the complaints I had about the PA in no uncertain terms and added that I had worked in the hospital ER that oversees the urgi care for 3 years and had been an RN in both ER and OR for 17 years. That seemed to carry some weight. I asked for a follow up call and was told I would get a phone call or a letter.

That PA should not be working in urgi care. She has neither the diagnostic skills or bedside manner to be caring for ANY patients.

UPDATE I am doing well on Dex and my gut is slowly adjusting to it. I do have to take Lomotil once daily, but it had been X2 daily so that is an improvement.

Most of the pain, urgency and frequency are almost gone. I had been tolerating iced tea for a long time, but had some at Red Robin yesterday that bothered me. I checked beforehand and it was sweetened with sugar. There may have been some preservative in the syrup or something....the burger was good though.

I'm so grateful to have found a doctor who has the open mindedness to Rx this for me. He is a psychiatrist involved in a study of 250,000 patients. He feels that viruses like chicken pox (varicela), CMV and some others I was unfamiliar with can linger in the body and cause problems. He said he is beginning to get referrals from cardiologists and dermatologist b/c the work he is involved in and his successes are becoming known. I'm sure there will be a study published eventually. This doc is very exacting and has all 250,000 patients on an Excel document. He said, "Viruses hate Dexedrine." It sounded crazy at first, but I'm beginning to think he is just way ahead of the learning curve of most conservative docs and really wants to help people.

I have my second appointment on Tues. I'm sure it will go well. Just wish it wasn't cash up front. I have no idea how to file a super bill. I have to ask his secretary..... I'm calling now to see if I can possibly get a discount tomorrow...

If any of you are thinking of trying to get an Rx for Dextroamphetamine sulfate and the doc offers you Adderall - a sustained release brand name version- I wouldn't take that. It has saccharate and aspartate as salts that have to do with the SR quality of A. Aspartate converts to aspartame - an artificial sweetener - in the digestive tract - one of the worst flaring agents. Artificial sweeteners also BLOCK the action of Elmiron.

I talked my doc out of Adderall before I even knew about those salts b/c I am so sensitive to meds and didn't want anything SR in case I reacted. Fortunately, he understood that and Rxd generic Dextroamphetamine sulfaate. My generic is called Dextrostat, but it also is called Dexedrine.

SamandMichelle, so nice to hear you are still progressing. I'm still a little behind you, but I'll catch up in time I'm sure. This med is just a little short of miraculous when it works. I'm so very glad I have it. I'm already taking less Urelle and having to do less instills.

I had been very sick with both IBS and IC flaring constantly for 15 months. Within 4 days, I noticed substantial improvement. I'm anemic from lack of good nutrition and absorption secondary to IBS and I know now that I've been able to take iron continuously for 3 weeks that I will feel more energetic once that is resolved. It takes a minimum of 3 weeks of iron supplements to make a difference in iron levels. Also, I'm taking Ferrous Sulfate 65 mg. - and the sulfate version is the most constipating - something that could help the IBS possibly too.

Anyway, I'd encourage any of you having difficulties managing IC the conventional route to explore the idea of Dextroamphetamine sulfate with your docs. Don't expect the first one to Rx it - I hit road blocks for 3 1/2 weeks b/f I found my doc. I think psychiatrists are much more comfortable dealing with this class of drugs. I just wish they weren't so $$$$. University hospitals often have psychiatric residents that see you for 45 minutes and the last 15 minutes are with the actual attending psychiatrist. There is a substantial savings, but I would have had to wait 40 days longer to be seen, and with my level of pain, I simply wasn't willing to do that.

Good luck to everyone dealing with flares and also good luck trying to find an understanding doc who will treat you with Dex. Neither my uro or gyn, both of whom I've been seeing for over 10 years would Rx it. My gyn called a local pain management guy and when he said he didn't use it, she didn't flat out refuse, but neither did she RX it even though 2 very experienced NPs contacted her on my behalf to encourage her to try it.

A few months down the road when my eire is settled down and I'm doing even better, I am going to write the pain management guy a very professional letter about "keeping up with updated treatments in the management of IC and pelvic pain." I am going to let the pain management guy and my gyn know exactly what their decisions cost me in terms of suffering while I waited for the Rx, financial burdens, etc. I'll include both those articles Elle was kind enough to provide links for. ERRRRRR:tsk:

I had a very good reason to call my uros office last week and I let his secretary know that I had made a pretty remarkable turn around from a 15 month flare with Dextroamphetamine. They'll get a little "progress with Dex" letter too. I doubt that that will change their minds, but it may make them think of how many patients are suffering needlessly b/c docs simply won't try this med for the right patient.

With patients all over the country asking for this, eventually there might be enough pressure to get a study done with substantial enough participants to make a difference in their opinions about Dex, and just the pressue of many patients asking to try Dex....hopefully we will make progress in this area. Research money will be hard to come by b/c Dex is off patent, so no drug company will want to spend the $ for research. It's so sad to me that patients suffer b/c there aren't enough funds for large studies.:confused:

Best wishes for symptom free days and for those you interested in Dex to be able to try it.

[ngazerro]

Janet,

:woohoo::woohoo: I am so glad it is helping!!

Hugs,
Nina

[Grammy]

Have any of you on dexedrine found that it increased your anxiety. I have had such a difficult time for fifteen years without a resolution that I am at my wits end. I tested positive for pne at Dr Conway's office however I have heard that he is not the best doctor to do pne surgery. After all the surgery I have had I am not so sure any more surgery would help me. My symptoms are in the order that they bother me:

fatigue
vaginal pressure anterior floor
severe vaginal burning mostly to the upper vaginal floor
pain after a bm
a feeling of a foreign object or falling out of the vagina.
relief comes from laying down so prolapse is most likely an ongoing issue.


Most of my symptoms are located in the vaginal area and I just can not do another surgery without trying the dexedrine. However I am wondering if you found the dexedrine to just make you feel generally better all over. Of course if it made you pain free it would make sense that you would be in a state of joy. But for those who get partial relief are you able to function better on a day to day basis?

[some_guy]

I am going to a Dr at Johns Hopkins today. I'm taking all the Dex info I can, but I won't ask him to prescribe on first visit. I will only ask that he read about it and consider it as an option and also talk with my primary doctor who will vouch that she knows me well and I am legitimate.

I'm taking doctor printouts, list of meds tried, supplements tried, and pictures of my bladder as well. I'm going to try to be positive while honest about how this has changed my life in hope that I do not scare this one off thinking he cannot help me. I'll try but am unsure how to be honest about all the things I tried and all the bad things this does without sounding like I hate it LOL.

[some_guy]

Hi - any of the dex people around? are you not here because you are doing well (I hope).

I'm getting desperate and am going to try this again, going to doc next week and hoping to give it a go. The first time I was scared of it and still in denial of IC pushing the hernia theory and did not give it a fair trial.

I've tried lots of things twice or more so a second try is par for the course.