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  • QueenieLady
    replied
    Why do you think we are inundated with immigrants, legal and illegal grrrrr

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  • Lori1975
    replied
    MEDICAL IS FREE!!! Thats it! I am moving to the UK!

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  • QueenieLady
    replied
    Thanks Lori and Vicki your posts are sooooo welcome

    So far.... the Atarax and Naproxen have improved my symptoms......and only been one them 1 day, so fingers crossed and maybe I will even be able to uncross the legs hehe.

    Not sure which one has done the trick or it could be both

    Ive been on Amitriptyline since 2007, yes I have put on weight but if I exercised it would shift, I'm just being lazy

    I'm in the UK so we don't have that type of insurance cos our medical stuff is all free

    Date night with boyfriend tomorrow night and have already told him the penetrative is OFF the menu hehe

    off to the shrink now to talk about me me me hehe

    xxx
    Last edited by QueenieLady; 02-08-2011, 03:34 AM. Reason: spelling

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  • VickiB
    replied
    Originally posted by QueenieLady View Post
    Oh and what is OTC meds like AZO or Uristat
    They are over the counter brand names of a urinary tract analgesic sold here in the USA.

    Hopefully someone will correct me if I'm wrong but I believe pyridium and the OTC meds like Azo and Uristat contain the same active ingredient, phenazopyridine hydrochloride. Uristat is 95mg, Azo comes in a 95mg and a 97.5mg tablet, and pyridium (prescription) is 100 to 200mg.

    Yes, they will stain so a panty liner is a good precaution when taking them.

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  • Lori1975
    replied
    QueenieLady,

    I am so sorry for all the complications you are running into. I think most of us go through the same crap, unless extremely lucky. AZO and Uristat are over the counter medications you can get at any pharmacy that helps with the burning or pain with urination. It is a small dosage but it helps. What works for me is prescribed Pyradium, which kind of relaxes the bladder and helps with pain when you urinate because it thickly coats every thing. However it stains everything. I suggest wearing a pad and you can't wear contacts because it will stain them yellow. You might want to ask your urologist about it or your doctor.

    Another tip I would listen to your body when you try something new...if you are in pain because of something...stop it no matter what your doctor says. The only thing is make sure it is the new medication irritating it and not something you ate or drank. There is so many foods and drinks that cause a flare up that it is hard to tell if it is the medication or not. As for Elmiron...you can google it and see if there is an insurance that will directly cover the cost of the drug. There is a company called Johnson and Johnson that covers the cost of Elmiron in the U.S.

    Elmiron didn't work so good for me. Bladder instillations are a better way of knowing if it helps in my opinion because the medicine goes directly into your bladder. Elmiron taking orally has a poor absorption rate meaning if you have a highly acidic body by the time Elmiron hits your bladder it is almost dissolved.

    As for amitripyline...it may conflict with other anti-depressants if you are taking any. Also you gain weight on this drug and can make you really tired and dizzy...so look out for those side effects. If it works for you great!

    Other treatments I think are really important are gentle stretches like restorative yoga, Tai Chi, meditation, guided imagery...because you do get so frustrated with this disease and irritable because of the pain. Stress makes everything worse especially until you find the right doctor..so I would do as much as you can at home. I hope this helps and I pray you get better. Take care.

    Lori

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  • QueenieLady
    replied
    Bloody doctors that I have seen are rubbish.

    The medical person I spoke to on the phone last night was a real comfort and she told me not to back down on the meds I want from my doctor.

    Sooooo I rang them first thing this morning and spoke to a doctor. I told her that Australian doctors had prescribed me anti histamine, amitriptyline, and anti inflammatory, I continued to tell her that the other doctor had just given me anti bacterial pills and that I though it odd and so did the doctor I spoke to last night....this doctor agreed and said she didn't understand why I had been given them as they were no good for what I have derrrrrr I knew that so why didn't the doctor

    I told her about the research I had done and the pills I wanted to try, she was a bit pissey with me, but who cares, its me that has to try and live with this.

    I managed to get Atarax and some anti inflammatory (NAPROXEN) BUT she said I would have to be referred by a consultant if I wanted Elmiron.....what a load of CRAP.....what this tells me is they must be expensive.....cheap douche bags

    I was told by the doc that I can continue to take higher doses of amitripyline so I take 75mg at night and 75mg in the morning, my usual daily dose is 25mg.

    To see a doctor here in the UK you have to be a member of a practice and you never know how good or bad they are until its too late grrrr, they are the ones that have to refer you to see a urologist......a very long and drawn out process BUT I guess I can't complain as it is all free here....but next time I go to the doc I will ask if I can be referred to a urologist.

    We can also telephone a medical help line and speak to a medical person....this is also free....the lady I spoke to last night was brilliant....I was sobbing my eyes out and she comforted me, advised me, sympathised with me, and gave me the ammunition to contact my doctor and tell them about the meds I did need...and not to take no for an answer....if I hit a brick wall she told me to go to the hospital

    This next bit just goes to show how clueless they are...

    My Mum went to collect my meds and was talking to the assistant, the pharmacist over heard them talking and butted in and announced "there is only 1 type of cystitis and all you have to do is take antibiotics and it will be fixed".

    Needless to say, my Mum reeled off all the things I have been telling her about IC and meds, and informed her there were a lot more different strains of cystitis....so there!!!! THEN the pharmacist asked my mum to ring her when she got home as she wanted some more info on IC and treatments that I had found out about and some websites that I have been reading.....as as far as she was concerned, there is only 1 type of cystitis....I expect she is now eating her words....I can't believe we let these people work with drugs when they have no clue what they are for

    RANT OVER lol

    Oh and what is OTC meds like AZO or Uristat

    im now keeping my fingers crossed that the amitriptyline, atarax, zapain work for me, they certainly make me float about....I start back at university next monday Ooooh Emmm Geee I hope I have improved by then

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  • sailawaygrl
    replied
    Maybe going to the hospital will get it through their head how much you are hurting. I hope you can see someone different tomorrow. I think we can all relate to that insane pain and fear you are feeling, so sorry. Hope you get answers soon. Are you seeing a urologist or a primary Dr?

    Leave a comment:


  • VickiB
    replied
    I don't have the bacteria form of cystitis!!! I have an inflamed bladder with severe cystitis symptoms, so WHY WHY WHY did she put me on them??? Why didn't she give me Atarax and Pentosan Polysulfate???
    Why doctors do what they do, -or don't do, is sometimes a mystery to me. I think some doctors just move slow, trying the least invasive and inexpensive fixes even if it doesn't seem to fit the symptoms. Maybe they buy time hoping the problem will just 'go away'. I know for years the only help I could get was being prescribed one antibiotic or another even though I showed having no infection. And of course, the ABs didn't solve my problem. In hindsight, I wonder if they ever had a clue?

    I don't know how it works in the UK as far as seeing another doctor, but I'm thinking that if possible, that might be worthwhile for you.

    In the meantime, over here we have OTC meds like AZO or Uristat available that can help mute bladder symptoms. Do you have anything like that there you could try? Or, many of us who aren't on sodium restricted diets use baking soda in water. 1/2 to 1 teaspoon to a glass. That usually soothes my raging bladder. I don't know that either of these are good to use long term, but sometimes you just need a break!

    I'm sorry you're going through this!

    Leave a comment:


  • QueenieLady
    replied
    Well Ive been on Trimethorprim for 4 days now and my symptoms subsided for 1 day but now the pain has got even worse than before I was taking them.

    I'm now breaking down in tears all the time, I now have severe pain in urethra and bladder and abdominal pain both sides, even worse than before, I now want to pee every minute of the day and night.

    In desperation I am taking higher doses of (prescribed) amitriptyline, and have been taking pain killers (prescribed), I am also taking anti inflammatory (not prescribed) and now taking anti histamine (not prescribed), I have also just taken a ton of laxatives as I have got constipation from the meds......but I'm soooo desperate for the pain to go away.

    I asked my doctor for Atarax (Hydroxyzine) and Pentosan Polysulfate (Elmiron) but she told me to take the Trimethoprin which are anti bacterial medicine but I don't have the bacteria form of cystitis!!! I have an inflamed bladder with severe cystitis symptoms, so WHY WHY WHY did she put me on them??? Why didn't she give me Atarax and Pentosan Polysulfate???

    I tried a TENS machine today for and hour but that didnt help at all

    A week on Monday I start uni and there is no way I can miss it, but how the hell am I going to be able to cope with this bloody cystitis.

    I have just telephoned NHS Direct and they are going to call me back, awww they just called back, told me to go to hospital but I decided to wait and go and see another doctor tomorrow.

    I am going to try and get an emergency appointment with the doctor tomorrow as I can't stand the pain

    Oh and the hospital just told me that Trimethorprim is supposed to prevent UTI's while my bladder is inflamed, and it won't make what I have any better.....how silly

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  • QueenieLady
    replied
    It's day 1 after taking Trimethorprim and this is the results so far:

    Have taken 2 tablets that are 100mg each.

    I also take Amitriptyline 100mg (2 x 50mg morning, 2 x 50mg night)
    3 Zapain (500mg each) 1 morning, 2 night (pain killers)
    4 pills of Dicloflex (25mg each) anti-inflammatory (2 morning, 2 night)

    Last night I had to get out of bed about 20 times to pee, this has not happened before so I was getting really distressed.

    I managed to get to sleep around 6am and woke up about 2pm.

    The urge to pee has gone down by half and so has the abdominal pains and the pain in urethra they have also reduced by half.

    I'm trying not to get too relieved and excited, until I am truly back to normal.

    I will let you know if I have improved any more after taking a few more of the Trimethorprim

    Finger Cross (and everything else)

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  • QueenieLady
    replied
    Hi all

    The doctor has put me on Trimethoprim 100mg a day, I asked her about the other drugs and she said I didn't need them :S

    She also told me to continue with the amitriptyline 25mg a day but I think I will take 50mg

    She said I was taking the Trimethoprim the last time I had cystitis without the bacteria, and after the cystocopy results.

    Ive just read that Trimethoprim is an anti-bacterial medicine, so I am a bit confused as I don't have any bacteria???

    She said that I get the inflammation at the base of my bladder after sex due to being sensitive down there, she also prescribed Sylk lubricant, she said it's better than KY.

    So all I have to do now is wait and hope that these pills do the job

    Anyone have more info on Trimethoprim??

    Thanks again for your interest and support xx

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

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  • VickiB
    replied
    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

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  • QueenieLady
    replied
    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

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  • Mothergoose
    replied
    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

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