First Flare Since Been on Dextro

[ngazerro]

Well needless to say, I was starting to think I was invincible. I have not had a flare in 7 months! Two days ago my bladder starting acting up, and I thought for sure I had a bladder infection. I wnet yesterday and took a urine test. No infection!:cussing: I was actually hoping for an infection and that would explain my pain. I guess my IC is acting up. I had stopped taking the atarax, so we decided to add it back. I had been eating alot of watermelon because it fills me up and I am on a diet. I stop eating the watermelon. I also was drinking yogurt smoothies in morning. Those are the only two different things. I stopped them also. I getting an install friday. Hopefully the flare will not last long. The dextro is helping, but I still have pain sitting at work. I had really forgotten how much IC really hurts!:cussing:

In the future I need to baby my bladder even when there is no pain. Not having pain for so long, I let my fences down about watching what I did.
lesson learned.

[lmq78]

I hope you feel better soon!!! I am sure it is easy to forget the pain we have after going so long feeling great. I am sure you will get back to the pain free days soon.

[leelee88]

Sorry you are flaring, I am glad though the Dex has gave you so much relief. I guess even with so much success with this drug you will still have to remb that you do have IC and might have times like this. I know I am having really good success with Glucosamine/MSM but still have to baby my bladder. Ugh Just wish they would come up with a cure already..Anyhow I hope it passes soon.. You know the routine.. UP the water flush the system out! ((((hugs))))

[ddscrazy]

I finally got to log on to this site after months of trying!!!Thanks to all of you that give us newbies hope and willpower to go on with life on a daily basis!!
Asked my Dr.(Uro) specializes in IC about dextro and no way!!!Only want to stay with all the older meds,not willing to try any newer ones like Zanax, Valium,Valuim suppositories.Quess he is afraid of the addiction factor,which I have none.
So glad your doing well on the dextro,so easy to slip,we just want to be normal and eat like everyone else does,so hard to always say"Oh I can't eat that" hate it!!!
I am sure your flare wont last long and you will be on your way to your normal soon!


Take Care DD

[SharonA]

I am so sorry. Flares are the pits. Hope it eases up quickly. :)

[ngazerro]

Thanks ddscrazy, leelee88, and lmq78,

My pain level got bad today at work. I just wanted to yank out my bladder!:cussing: I took a 1/2 of lortab and drank tons of water. It is feeling much better. I am going to skip my exercise class tonight, go home and watch movies. Hopefully that was the worst of it. It does amaze me that I really had forgotten how painful it can be. I do know now that even though I felt like I didn't have IC anymore, it will always be there to remind me.:rolleyes:

leelee88,

It would be nice to have a cure!!:flower:

[justice4j]

Hi Everyone,

Many doctors fear giving their patients Rxs for Dex even worse than narcotics. At least it seems that way from my experience.

I would suggest you try a psychiatrist well versed in treating ADD. They are more familiar with amphetamines b/c of this and less hesitant (in general) and more comfortable with this class of meds. Also, when a psychiatrist Rxs something like Dex, I believe it probably raises less of a "red flag" b/c it's more common for them to be Rxing it.

Psychiatrist I think are also more versed in the "brain body pain" connection.

Just a suggestion for those of you wanting to try this and having difficulty getting a doctor willing to treat you with this.

Also, as we in the IC community become more known for using this medication, eventually other doctors will follow suit - they won't feel so vulnerable legally and gentle "patient insistance" will prevail. I really believe that.

[patsagan]

Watermelon is the only food I still cannot tolerate. I take 2 cystoprotek in the morning and 2 at night.

[ngazerro]

Thanks everyone. I started feeling better Saturday. I cut the watermelon out. I really liked it. I can't believe it caused such a bad flare!!:cussing: I am dieting and the watermelon help keep the belly full. Oh well, I guess I will have to find something else.


patsagan,

That is weird it makes you flare too. It seems like that is the only food that has ever made me flare. Exercise would make me flare but not food. Who would have thought?? I liked the way it made me need to pee, since I have retention. Yesterday, after I worked in the yard, I opened the fridge and saw the watermelon. I wanted to eat some so bad! Then I thought, "no" better not it's bad and evil!:evilsmile I did look at my allergy test that I took a couple years ago and sure enough watermelon was something I had a reaction to on my test. I have eaten it over the years, but just a little. I guess when I gorged myself with it, my body revolted. :tsk: I started taking my atarax again, so that helps.My boys love it so I will still have to keep it in the fridge. Just have self control...:smile tee

[lisabar36]

I am so sorry. I am glad your starting to feel better.
j56, I went to a psychiatrist for the dextro. I printed out all the info and gave it to him and he was fine with letting me try it. He did know alot about the drug. I had asked my uro for it first and he said no. So I think your are right for those who want to try it, a psychiatrist may be the better person to ask. :)

[justice4j]

They had a cancellation. I'll be seen at 10 AM tomorrow morning. OOOPS this morning. I can't sleep. Pain, a little anxiety, and scared. I hope it works I am in 12 level pain....

Send some good thoughts please. I love you all. This is the greatest place for support.

[ddscrazy]

Janet,

So glad you got to get in to see the DR.early.How di it go?You get your RX for Dextro?Sorry you are in so much pain!!Please e-mail me and let me know if it went well for you,so I can try and see him.

All of us in CA.need to group together and get out DR to listen to us.My DR.wants to try another instill with no lido,just elmiron,muricaine,sterile water or soidum bi,am still burning from the last one and it has been 10 days.Upped my elmiron to 2caps2xs aday.Wants me to try Cymbalta but I was on this once before and had weight gain,sweating,and it is a hard drug to get off of!!So I don't know about that one.

Take care and let us know how you are doing!!

Diana

[justice4j]

Hi,
Took my first dose of Dextroamphetamine sulfate at 1:30 PM. I only took 1/4 of a 5 mg. tab b/c I had 3 piano students this afternoon and thought they might appreciate not having a wigged out teacher.:tsk:

I actually felt very mellow about 2 hours afterward. Tomorrow, I will take probably 2.5 mg. in the AM. IC and IBS are down a few notches:woohoo:

It's fascinating to me that it made me feel mellow, and I know I'm not the only one. What's up with that? Makes me think that those of us who respond well to Dex have some nervous system problem that it levels out???

I got very little sleep last night b/c of printing out lists of docs, Dxs and Rxs as well as a brief family medical history.

The psychi I went to feels there may be viral involvement in my case, so he ordered an extensive viral panel which won't be completed for 2-3 weeks. At that point, I see him again for a brief "med re-check" appoitment and review of the labwork.

I am relieve I have this medication to try.

I have to tell you that I have an :angel: for a boyfriend. He drove me and went to the doctor with me even though he was really tired and had a gig himself tonight. Many times I shake my head and wonder at the luck I had in meeting him and the luck we had in finding each other so compatible.

Well, here's to working on getting my life back....I want to lift weights again, keep my house reasonably clean and my 3 standard poodles reasonably groomed, and keep the loving relationship I have that is beyond special.

I thank you all for staying on this journey with me. Without your support, the last 3 weeks fighting to get to try this would have been simply unbearable.

Thank you, all of you.
Love,:hi::smile tee

[camackin]

that's great news Janet! i hope it gives you relief - let us know how you go!

[ngazerro]

:woohoo::woohoo::woohoo: I hope you get great results!!!

Hugs Nina

[Ratchada]

ngazerro - Watermelon and almost every fruit will cause a flare, even the supposedly well-tolerated blueberry. I can tolerate maybe one serving of honeydew but forget eating that on a regular basis. I really only eat pears. After I wash them, I slice them (leaving skin on - usually buy organic) and put them in a crock pot, add a little water and cook overnight. Then I blend the pears to make pear sauce. There will be enough for about 6 containers which I freeze. The sauce is great with warmed rice pudding and walnuts or vanilla ice cream. Pears make very poor slushies, however. So much for a healthy diet that includes a variety of fruit. Ratchada

[justice4j]

Hi Everyone,

I got an Rx for Dextroamphetamine 5 mg. in the AM and 5 mg. at 12 N.

By the time I left the Dr.'s office, went to the lab to have the viral panels drawn that he ordered, traveled the 50 minutes back to have my Rx filled locally, it was 1:30 PM.

When I left the office, my pain level was SEVEN. I took ONE-FOURTH of a Dex 5 mg. tablet - which by the way is generic and $10 :woohoo:. About 2 hours later I felt "mellow".

I was also Rxd Zanaflex, which gave me a h/a that felt like a sinus h/a, so that won't be used again. I only took HALF of that!

I woke up after 9 1/2 continuous hours of uninterrupted sleep! MY PAIN LEVEL IS DOWN FROM 7 TO 2!
My bladder feels "bruised". But after a 15 month flare, it's pretty much entitled to feel sore.

My doctor agreed that I can take it as slowly as I want to with the Dex, and after breakfast - I have to take Levoxyl, Elmiron and Nexium on an empty stomach - I think I'll just take 2.5 mg.

I'll continue to update everyone. I am ecstatic! To wake up rested with very little "pain" is unbelievable.

Thanks everyone for your unflinching support as I went through the hurdles to get this prescribed.

Love You All,

[ngazerro]

:woohoo::woohoo::woohoo::woohoo:

:grouphug:

[ngazerro]

Ratchada,

I am allergic to pears also..:cussing: I ate some honeydew last night and I was fine with that. I eat mango smoothies and seem to be ok with them. I love fruit. Watermelon was one of my faves.. I guess not anymore. the pear sauce sounds really good!! I wish I could make it but being allergic to them my bladder would go crazy again.

Thanks

[camackin]

I'm so happy for you! I hope the improvements continue!

[justice4j]

I know it will continue! It's working great. My bladder just feels bruised and sore, not painful. Poor little organ...with all it's been through, I'm not surprised that I still feel some soreness. After all, I'm ending a 15 month flare.

Thank GOD no more Elavil. That stuff did a number on me. I know it helps a lot of others, the side effects drove me up the wall.

Thanks for the good wishes.

Wishing Everyone Completely symptom Free Days,

[camackin]

yeah i've been in a flare since last june where my good days are still not even remotely pain free. BUT yesterday i had an almost completely pain-free day!!! could it be that the nerves in the pelvis are so used to being inflamed that it might take a little while for them to calm down?

i know what you mean about the elavil, i felt sooo sleepy - now i can actually get out of bed in the morning!! i woke up before my husband today for the first time since....well, ever =)

[ddscrazy]

Janet,

So happy to hear that the dextro is working so well so fast!!Did you e-mail me with his name?If not please do!!I would be willing to pay the money to go see a DR.that knows this medications history and knows about the effects it can have on ICers.Amazing that it doen't make you feel wired!!

What does the viral panel entail?Could you have a virus that is making you susecptible to the IC? All this is so interesting to me being new to this illness.I wonder if Dr. will only give this med to somone who has exhausted all other possibilites.Since I ahte type of medication that makes feel antsy..

I wish you continued success with this medication and your journey with IC all of you that have had this awful burden for so long deserve to have a life pain free as we all do.Good Luck.....Tell your boyfriend he is truly an amazing person and a wonderful man!!!

Take Care
Diana

[snowgirl]

Hi Everyone,

I got an Rx for Dextroamphetamine 5 mg. in the AM and 5 mg. at 12 N.

By the time I left the Dr.'s office, went to the lab to have the viral panels drawn that he ordered, traveled the 50 minutes back to have my Rx filled locally, it was 1:30 PM.

When I left the office, my pain level was SEVEN. I took ONE-FOURTH of a Dex 5 mg. tablet - which by the way is generic and $10 :woohoo:. About 2 hours later I felt "mellow".

I was also Rxd Zanaflex, which gave me a h/a that felt like a sinus h/a, so that won't be used again. I only took HALF of that!

I woke up after 9 1/2 continuous hours of uninterrupted sleep! MY PAIN LEVEL IS DOWN FROM 7 TO 2!
My bladder feels "bruised". But after a 15 month flare, it's pretty much entitled to feel sore.

My doctor agreed that I can take it as slowly as I want to with the Dex, and after breakfast - I have to take Levoxyl, Elmiron and Nexium on an empty stomach - I think I'll just take 2.5 mg.

I'll continue to update everyone. I am ecstatic! To wake up rested with very little "pain" is unbelievable.

Thanks everyone for your unflinching support as I went through the hurdles to get this prescribed.

Love You All,

Wow Jan that is great. Glad it works for you. Iknow it would not for me. Vn

[Wolfe]

I a SO GLAD for all of you who get to try the dex, and so GRATEFUL to all of you for being willing to step out into the unknown. Those of us beside you will benefit from your experience and your breaking ground. Wishing you all the Wellness you can derive from it!

[malone]

Janet,
I am trying the Dex also and I think it is helping however my doctor gave me the long acting by mistake. I am sensitive to drugs also and they do the opposite but if they are helping at all then the other ones should be great! I am curious too about the virus panel blood work. If it is not to much trouble could you email or PM it to me as I know people do not like to discuss it here. I have been runnung a low grade fever for about 10 days, actually today is the first day I have not and would like to get to the bottom of it. Thanks you so much.
Ginny

[justice4j]

Hi Everyone,

Thank you July for your nice comments. I rather LIKE being a "pioneer" of sorts. Also, when you have had a 15 month flare, you're more willing to go into somewhat uncharted territory. My paternal great aunt on my father's side was a "sooner" and I am related to Davey Crockett, and Pocahantis(sp) on my mom's side. My mom is a member of the Daughters of American Revolution. I'm lucky to have geneologists on both sides of my family.

I'm happy to report that Fri. the 2nd Dex day, I used the topical Valium 10 mg. at bedtime for PFD and also took Vistaril 50 mg that Dr. Parsons wanted me to take for allergies. I had had to choose between the two before Dex. Vistaril and Atarax interacted with the Valium even though the V was topical. It is rare for a patient to become sedated from topical V, but I did, so the antihistamines were enhancing the sedation. Now with Dex, they don't!

Now I can use topical V and take Vistaril at night because Dex counteracts the sedation of Valium! Some pain docs even Rx Dex to counteract the sedative effects of pain meds so that patients can function more normally.

Day 3 - Sat. July 19th- I had a gig and it was GREAT! I woke up w/o any "hangover" from Vistaril or Valium! IBS flared badly and took 7 Imodium ( I know that exceeds the amount rec on the package, but my GI doc told me I could use up to 8 per day). I got lost going to the location, was late b/c the IBS hit me right when I was getting ready to go....:rolleyes::But, I stayed calm. I believe that it had alot to do with the med combo finally getting tweaked almost to perfection and a very understanding hostess. I don't know which one of those factors were more important and wish I knew...

When I began to play their piano it felt wonderful. You never know what the piano is going to be like beforehand and it's always a bit of a concern. Well, this one was a brand that I don't usually like, but it was perfect. The action felt just like I like - firm and not mushy, it had been tuned recently and it sounded great.

My first set I played 2 1/2 hours w/o a break. Most musicians break once every hour. I like to play usually 1 1/2 hour first set. When I get into the zone, I dont' like to stop. I thoroughly enjoyed myself. The guests were so sweet and said such nice things. Some even danced. I love watching people respond to music. Another guy was in another room dancing around snapping his fingers while I played a swing tune.

I got to wear my new yellow halter sundress that has a flouncy layered skirt and succeeded in putting on false eyelashes for the first time. My lashes have mostly dropped out on the upper lids due to low iron levels. Every woman knows how special it feels to feel pretty and feminine and we lose so much of that with pain.

I really believe the med combo is working so well on lowering my pain and increasing my focus. I played better than I have played in a very long time and I have not felt able to really practice for months. But, as musicians say when they've really enjoyed a performance I just plain "played my *** off!" I had such a good time. As an artist, to feel this coming back is indescribably delicious. I had lost the joy of playing due to pain and felt overwhelmingly sad about losing this very big part of who I am.

It's interesting the questions people ask you about playing when they don't play themselves and it's always fun to talk about the process of learning to play piano and loving it so.

I so hope that more doctors will realize what an incredible tool Dextroamphetamine sulfate - mine is generic Dextrostat-can be for the right patient and I am so grateful that it is working so well for me so far.

Without the encouragement of everyone here on this wonderful board, I might have lost the will to fight for it, and look what I would have missed!

Love and Symptom Free Days To All Of You

[lmq78]

I have been out of town and am just now catching up on all of the post. I was so excited to read that you got your medication and THAT IT IS WORKING!!! I hope you continue to feel better each and every day.