allergic reaction and elmiron

[duana]

have any of you had a bad allergic reaction from elmiron?i started taking it last weel.immediately after taking it i noticed dizziness,the dizziness continued and about 4 days later i developed a severe anxiety attack,shaking,heart irregularities and sweating.it lasted about an hour or less.i take a beta blocker for heart palpitations anyway.i stopped the elmiron.i feel some better but still am a little lightheaded.could this be a rare side effect or just coincidence is what i'm asking myself.i don't know whether to give it another try or not.my doctor is in a private practice and will be out of the office for several weeks.i can't talk to her till she gets back.

anyone else have this reaction?i have never done well with new meds.

duana

[asIshallbe]

if you look back into my posts I talk about it a couple of times. I had massive anxiety.

[TXP28]

Oddly, I'm highly allergic to Elmiron. I took it for the first time back in 2004. I was ok for a couple weeks and then all of a sudden I broke out in head to toe hives. I didn't think it was the Elmiron at first but I've never had an allergic reaction to ANYTHING. Frustrating enough, I went off the Elmiron and it took my hives 5 months to go away.

A year later, I tried Elmiron again, just to see if that was it. Sure enough, after the first pill, the hives came back instantly.

[ICNDonna]

Anyone with those symptoms needs to be in contact with a physician. Please don't wait or try to treat yourself.

Donna

[TXP28]

I agree Donna. I had to go to an allergist and back to the urologist because of my reaction but they too couldn't conclude that it was the Elmiron.
They assumed so due to my medical hx and no other past allergic reactions.
Go to a Dr. immediately.

Too bad, will never know if Elmiron would have been some relief for me.

[Skynard]

Yes, I had heart palpitations, dizziness and IBS trouble - even after taking the Elmiron out of the shell (due to the lactose). They took me off it immediately.

[duana]

skynard,how many capsules of elmiron did you take before you noticed this kind of reaction?i took one capsule and noticed dizziness about an hour later.i only took one per day for about 5 days and that is when i noticed the anxiety and later the heart palpitations.my heart beat really chaotic for about an hour.i thought i was going to have to go to the emergency room.i take a beta blocker for a heart rhythm disturbance anyway and i'm thinking that the elmiron may have made things worse.

i really wish i could give it one more try,but i'm afraid to.

duana

[Skynard]

Pretty much the same as your story. I took one and noticed immediate problems, but wanted to allow my body to adjust to it. I then took it out of the shell for the IBS trouble and continued for another four days. It was just too much and they yanked me off it. I was discouraged as my sister has been taking it up to four times a day without any problems, but my urologist wanted me on the Cystoprotek. I am having success with it. If you are not taking it or the DH Aloe, I would suggest that you tyr them. Keep in mind that some meds (herbal or otherwise) can interact badly with one another. You might want to take your list to the pharmacy (I called ahead when I did this to have them print out all my meds prior to me coming, and to make sure they had time for me) and see if they think that might be part of the problem. I just happen to be one of those people that are highly hyper sensistive to meds. I have been in the hospital twice in the last two months for drug reactions and three for pain, so I know the frustration. When this all came down with the Elmiron, my urologist took me off everything but the Elmiron to make sure it was in fact, the culprit. It was.

Feel free to PM me anytime. I will keep you in my thoughts and prayers.

God Bless.

[jvr]

Hi Skynard,

I'm so happy to hear that the Cystoprotek is helping you! If you don't mind sharing, what kind of improvements have you noticed? How long have you been on it? I'm so very tempted to try it for my daughter and I! I've been holding off for my daughter until I can talk to Dr. Parsons more about his thoughts on this next month. I just started the Elmiron and am getting ready to start either Elavil or Atarax soon so I'm trying to add one thing at a time, but it seems like so many have done so well on Cystoprotek. This damn disorder is so darn expensive! The Elmirion is costing me enough even with insurance. I thought I read another post where you're also doing instills? Again, I'm so glad to hear you starting to feel a bit better:) Sounds like your on a good path!

Jill

[Diamic65]

What is Cystoprotek? I have no idea what it is?


DIAMIC65

[jvr]

Hi Diamic65,

Cystoprotek is a supplement made from Quercetin and Chondroitin Sulfate amongst other ingrediants. It was formulated by Dr. Theoharides and Dr. Grannum Sant. They are both very reputable doctors. I believe Dr. Theoharides was the first to point out the whole mast cell theory with IC many years ago and Dr. Sant has been involved with IC for many years. Anyway, you can find more information by going straight to the Cystoprotek website. Also on the boards here there is a section that covers questions in regards to supplements like Cystoprotek and Aloe, etc. Nothing helps everyone obviously, but I've personally been impressed by multiple posts from others on here who have felt that it helped them. It can be purchased here on the ICN, straight from the company, or also on Amazon.com.

Jill:)

[Skynard]

Jill - I did try the instills. The first two were the DMSO cocktails and they did not like me at all. Then I tried the Marcaine cocktails. Those helped a lot, but they also came with some mean side effects. Come to find out that it was not the Marcaine, but the other ingredients that made up the cocktail - seems they contain preservatives. They are holding off on anymore for right now.

Overall, my pain level has gone from a 12 to between a 2-3. I never really had the frequency problem. just immense pain. I attribute that to prayer, diet, pro/prebiotics, the two Marcaine instills and definately the DH Aloe and the Cystoprotek. I just feel better. It is hard to describe, but overall just feel like they are calming things down. I still have my IC swelly belly, but not as bad. My IBS has calmed down - which is the pre-probiotics and the Aloe for sure. I have been on the Cystoprotek since Sept 2 on Aloe since Sept 11.
I hope to eventually get up to the max amount they want you to take, but I am taking it slow right now to avoid my IBS from flaring.

Hope this helps you. PM me anytime.

God Bless.

Skyn

[Skynard]

I should have mentioned that my doctor gave me a savings card for Elmiron - it only cost me $5. I think the card was for five refills. I also got samples from her for Cystoprotek and samples directly from DH for the aloe vera. This helps when you have sensitivities to meds like I do and waste so much money on stuff you can't take. You might want to check into that if you have not done so already...............