Hi I'm New - Yet Another Flare up :(

[QueenieLady]

Hi everyone,

I found this site and hope to get some help and also share my story.

In my 20's and 30's I used to get the bacteria cystitis which was zapped away by antibiotics, this was always caused by having sex with my boyfriend.

Now in my 40's in 2007, I had serve cystitis but it was found out in the end after tests, countless antibiotics, internal xray and a cystoscopy that I didn't have the bacteria and my bladder was inflamed.

I was put on amitriptyline and trying to remember back, I think anti inflammatory pills and anti-histamine and after 6 weeks or so it cleared up.... phew as it was debilitating.

BUT last week it came back again (same boyfriend), I tried antibiotics (from my emergency backup storage) but it didn't stop so I went to visit my doctor, he confirmed no bacteria and gave me pain killers.

I had sort of forgotten about having the non bacteria cystitis and the treatment I received until a day later when mum reminded me, so I upped my amitriptyline from 25mg a day to 100mg at night and 50mg in the morning, I am borrowing my mums anti-inflammatory Dicloflex 50mg at night and 50mg in the morning and painkillers Zapain 1 caplet in the morning and 2 at night (each of these contain 30mg of codeine phosphate and 500mg of paracetamol), But I still have the constant erg to pee all the time.

Tomorrow I am going to see my doctor again to get Atarax after what I have read.

I am also going to check what exactly I was taking when I had the non bacteria cystitis last time.

So I plan on taking the following:

Amitriptyline 150mg day
Atarax (anti-histamine) 75mg a day
Zapain (painkillers) 3 caplets per day (2 at night that totally knock me out)
(anti-inflammatory)???? - Which anti-inflammatory do people recommend for IC???

From the research I have done, I think I have interstitial cystitis but I only ever get it after having sex with this one man. We have broken up a few times over the past 20 years and I have had sex with other men (god that sounds terrible lol) but I only ever get cystitis or IC from my boyfriend....why do you think that is??

From the research I have done I have read that some ladies have IC all the time, not just like me through having sex, I really feel for these ladies, my god how the hell do you live through that, is must be terrible.

Please let me know which anti-inflammatory you would recommend so I can ask my doctor for it tomorrow (3rd Feb)

Thanks

[KatieB]

Welcome

I'm glad that you're getting some information you can use here. But, really you're doctor is the only person who should be giving you medical/drug advice. Did you tell him that you had taken antibiotics before you went in for the test? Because that can affect the way a urinalysis comes out. I'm more than willing to offer you my support and I certainly hope you don't have IC, but if you do, you should try to find a doctor who can work with you on a treatment program that works for you. Good luck and I hope you're feeling better soon.

[QueenieLady]

HI

Thanks for your reply

Yes I did tell the Doc that I had been taking antibiotics, I don't think this doc knows my history but I'm going to see my Doc tomorrow to discuss medication.

I just wondered what anti-inflammatory pills were working with other suffers

I have the symptions of IC, constant pressure to pee but then can pass only very small amount, buring pain when peeing, pain in pelvic area.

I am reading about Elmiron on here too, that seems to work for a lot of people but I'm scared of the hair loss, but yes I will discuss with my doc tomorrow

[VickiB]

Hi Queenie,

So sorry you're being plagued with these symptoms. It sure is life-disrupting to say the least!

I'm just thinking that while sex can set off flares with IC, I don't know that the particular partner would matter so much with IC. It is strange that these episodes only seem to occur for you after having sex with this one man in particular. All the more reason you might want to go the medical route in search of a diagnosis of exactly what this is. -Could he possibly have some sort of STD that is behind this? Seems like something you'd want to know,...-and treat, if so! Maybe it's time to think about seeing a good uro/gyn.

Whatever it is, I hope you can get the symptoms resolved, and keep them resolved, soon!
Vicki

[QueenieLady]

No he doesn't have an STD, especially have one for 20 years.

Am looking forward to seeing the doc tomorrow, only sleep stops the discomfort

[sailawaygrl]

Hi Queenie,

Welcome to the ICN. I, like the other ladies would reccomend you see your Dr. I may be misreading your post but it sounds like you are medicating yourself before a definitive diagnosis. When I was in the process of being diagnosed, and in agony of course, the Dr's didn't want to start me on any medications for fear it would give them false reading on my tests. I was given pain meds but nothing else. So please consult with your Dr on that one. ON the thought of a possible std, many people can have one and live with it for many many years and not know. One of the tests they do to eliminate other possible causes is for std's so they will rule that out. Don't be offended by them wanting to do the test, I know I was a bit put out with it, but it is necessary to get a correct diagnosis.

Good luck with the Dr tomorrow.
Sandra

[QueenieLady]

Yes I am self medicating, I had this once before and following the treatment the hospital prescribed.

When it cleared up last time I was told to continue and just take 25mg amitriptiline everyday as a prevention, so this is what I have done. I have just upped the dose to what I was on the last flare.

I went to the docs 2 days ago now and he gave me the pain killers and i told him id upped the amtriptiline, he tested for std's, bacteria, blood in urine and pregnancy all negative, this is how I know I have exactly the same thing as I had before.

As the ladies on here have a wealth of experience with different medication for IC, that is why i asked about the anti inflammatory pills and any recommendations that I could take to my doctor tomorrow.....recommendations is all I requested so I could ask my doc as they are not specialists in this field just general doctors.

GP Doctors in UK can't diagnose stuff like this, we have to go into hospital for tests (cystoscopy), this is what happened last time I had it

Just a name of an anti histamine that has worked for others...

[VickiB]

When I was first diagnosed these are the meds my uro prescribed.
Elmiron
Amitriptyline (antidepressant)
Hydroxyzine (antihistimine)
From what I've seen here this is not an uncommon combination, and it did work well for me.

As for an anti-inflammatory I really don't have any personal experience in that area. Here's a thread where they discussed it last year. Perhaps you'll find something interesting: http://www.ic-network.com/forum/show...ti-inflamatory

Good luck tomorrow!
Vicki

[QueenieLady]

That's a great help thanks

I'm a bit worried about Elmiron and hair loss but will take this info with me to the docs....errm today....Couldn't sleep last night so been up all night long

what mg's were you taking of
Elmiron
Amitriptyline (antidepressant)
Hydroxyzine (antihistimine) ???

[sailawaygrl]

Hi,

Most people take 300 mg of Elmiron, some take 400 mg a day (200mg morning and 100 mg at night)
Not sure on the amitriptyline, usually it is a lower dose I think
Hydroxyzine is different as to how it works for you but anywhere from 25 mg to 100mg, it does make you sleepy so I take it at night

Good luck to you, I hope they are able to help you!

Sandra

[Lori1975]

Greetings,

I wouldn't worry about the Elmiron and hair loss. The reason they said it is a side effect is because with animal testing they dosed large quantities of the drug to find its side effects...like they do with most drugs. My doctor told me not to worry. Now, at first I was concerned first as well and noticed losing hair in the shower and was petrified...however you always lose a ton of hair in the shower..you just usually never pay attention to it. I took it orally for 2 years and no more hairloss than normal. I stopped taking Elmiron orally because of the absorption rate. If you have a highly acidic body by the time the medicine reaches your bladder it is usually less than 10%.

I recommend bladder instills with elmiron..at least I think it is more effective than taking it orally. However I wouldn't even take any I.C. specific medications until you have a diagnosis. I had a Cystoscopy ith Hydrodistention. They fill up your bladder with liquid and then take pictures. Through this you can see if you have cracks in your bladder. If you have that then you have I.C. and then you can discuss treatments such as medications, bladder instillations, ect. I have found accupuncture to be helpful with bladder pain...and anything that helps you to relax such as guided imagery, yoga, tai chi, meditation, ect.

My thoughts with the boyfriend is that...and I am only guessing...stress increases pain in your body. If you are under emotional pain of any kind it is important to listen to what your body is telling you. If your body hurts having sex with this guy...maybe your body is telling you this isn't right..stop. At least this is what I needed to do in my case. I needed to rid myself of people who pressured me, manipulated me, were emotionally abusive, and unsupportive. I needed to learn to love what is good for me and I am still working on that. I wish you the best. Take care.

[Mothergoose]

I agree with others it may tkae you longer to get this under control if you self medicate.

Amitriline is ussally used for IC at lower doses.

Hydroizine is a rx antihistamine.

Anti inflamitory many icer's don't tolerate this to well, so can take it. I can take an older anti inflm called Ponstan or Ponstel. I used to be used for period pain, but as with lots of meds uses change over time. I have not read that many others here take this. there was a manufactures shortage last year and tried some other ones which all made me worse. Pharamcist said there is nothing the same as this type of anti imflamitory.

MG

[QueenieLady]

Thank you all for the information, I managed to sleep as the pain killers the doc gave me a few days ago knock me out.

I am off to the doctors in an hour, a bit anxious and nervous but hopefully she will be able to tell me what meds I was taking the last time this happened.

I will let you know how it goes when I come back home

Thanks again for your advice and support

[VickiB]

what mg's were you taking of
Elmiron
Amitriptyline (antidepressant)
Hydroxyzine (antihistimine) ???

300mg Elmiron
50mg Amitriptyline
25mg Hydroxyzine

My doctor wanted me to increase the amitriptyline to 75mg in time but I never did. I ended up speaking to him instead about going the other direction, deceasing the amounts of that and the hydroxyzine. I was such a zombie on them!

Hair loss often comes up as a concern here for people with Elmiron. I'm told this only occurs for a very small percentage. Keep in mind that the average person does lose around 150 strands a day, and the majority of those show up on the day you wash your hair. I was like Lori, thinking OMG upon noticing the shower drain after beginning the drug. But I don't think my hair loss increased. Rather I think I just never paid attention to how much hair I normally shed until I was made aware that it might happen with the drug. ICNDonna always recommends that one begin to pay attention to what is normal hair loss when you brush (and that shower drain thing I'd say too) before you begin taking Elmiron. That's a great idea. That way you have something to compare with.

Vicki

[KatieB]

How did it go at the doctor?? I hope everything went well. Let us know!!