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Prednisone is working for me-that sucks!

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  • jeanniebug
    replied
    Re: Prednisone is working for me-that sucks!

    This is an old thread but I've been on Prednisone 10mg for one year now. I take it for severe Refractory IC and Autoimmune Dysfunction Syndrome.

    I didn't have many side effects besides blurry vision on some days until recently. All of a sudden I gained 13 pounds & I bruise VERY easily.

    I think it's important to remember that some people have serious autoimmune disorders & that "auto"immune means the immune system is in overdrive. In these cases Prednisone supresses that overactive immune system & helps the body quit attacking itself. No it does not "cure" but it CAN help the body learn to stop attacking itself with "friendly fire."

    I agree it's a deal with the devil. But I was bed ridden without it so my Dr & I had a serious "quality of life" discussion. I was also seriously & very dangerously suicidal after 12 years of nonstop debilitating IC pain & joint pain. No antidepressant or amount of therapy helped. I tried it all & for YEARS. I needed to get the PAIN under control because I was literally going crazy.

    I hope to go off it at some point but for me it gave me my life back. I can still flare up on it but I have many days where I can leave the house. I just have to accept the bruises & extra weight & try not to worry so much about longterm repurcussions.
    Last edited by jeanniebug; 08-23-2016, 11:20 AM.

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  • Tina2
    replied
    Re: Metholtrexte (sp?)

    This is a really interesting threat. I took Bruffen for years after a back injury and am now wondering if that also helped IC as it is also an anti inflammatory. I stopped taking it as a URO told me it makes IC worse, but now I am really wondering if she was wrong. Bruffen is just another name for Ibroprophen (cant spell sorry) and I know others on here take that. Inflammation realy seems to be the key in my mind, going to watch the new drug they are working on in Europe as in my mind it looks very exciting.

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  • Sharon in AZ
    replied
    Re: Metholtrexte (sp?)

    Originally posted by hollyf View Post
    Since finally being diagnosed with severe inflammation in my hands I was put on the above medication...believe it or not it has helped my IC. When I told my rheumatologist this she looked at me like I was nuts. Glad she's not my IC doc! It doesn't seem to have the weight gain side effects of prednisone, but I do have to go and have monthly blood work done to check red blood cell count. All of these medications can be potentially dangerous. This is the only medication that has even given me the slightest relief from IC. I have been on and tried so many that I have forgotten most of them. I still suffer, just not qute as much. If I am lucky I get 1 good symptom free day a month. Believe me, I pack a whole months worth of activities in to this one day!
    I also take methotrexate and also Remicade for rheumatoid arthritis. My urologist told me that is probably why I have so few symptoms. I have had no side effects from the MTX and I have been taking it for ten years now. I only have to have blood tests every three months, now, to make sure the MTX and Remicade are not affecting my liver.

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  • Tina2
    replied
    Re: Prednisone is working for me-that sucks!

    Originally posted by Mothergoose View Post
    hollyf: My aunt was put on Metholtrexte, I am not too sure what for, but a pleasant side effect for her was it helpped improve her Asthma, something the cortisone had not helpped.

    Sometimes Dr. find meds intended for something else help other things, this is called off label use.

    Good Luck MG
    This is true, was given Fluconozol for cronic thrush but GP forgot to tell me to stop Vesicare, long story but short story is I am now back on Fluconozol 50g per day plus Vesicare 10g no side effects and helping vulva inflammation and the IC. Also taking zertec, hiprex, inderal, statins, low does asprin,. May not work for others but right now it is helping me. Going back to orriginal "effects of Pred" I now have to undergo cardiac tests as it seems to have also done something to my heart, so looks like more pills will be added to what I am already taking to stop the heart racing.

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  • HRJ
    replied
    Re: Prednisone is working for me-that sucks!

    so if it just keeps your body from feeling the inflammation, you go on it, feel great, eat what you want, it seems it could (in the long run) make the IC worse by causing more damage to the bladder in a numbed state? My dr wanted me to try a small amount of cortisol for IC bc it goes away every time I am sick. But I have been too afraid to try the cortisol (even if only 5 mg). This has been an eye opening post.

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  • Tina2
    replied
    Re: Prednisone is working for me-that sucks!

    Thanks Bubble, hard in Aus we are years behind the US. Have been give a sample of mirabegron but having read the reviews I have decided not to take it a bit of the devil you know rather than the one you dont know. There is a new drug being developed in Europe should be in the US around 2018 sounds good as its main aim is to deal with inflammation, so I will battle on until it is available. I do hope you feel better very soon

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  • bubbe1
    replied
    Re: Prednisone is working for me-that sucks!

    Originally posted by Tina2 View Post
    Hi Laurie

    Well I will say sorry because this is not a positive post. I was put on pred about 2 years ago to fight cronic inflammation of the vulva, at that point the IC had beed fairly well undercontrol. I have had IC for over 20 years. I felt fantastic on the pred, it makes your brain not feel inflammation. Then my blood pressure shot up, and I was told to stop the pred that is when things got bad. I ended up with the worst flare in my life as the brain again felt the inflammation. So bad I ended up in hospital. Since then it has been to be honest a nightmare of seeing different doctors, trying different thing to try to settle it all down. Now on Fluconozol 50g a day, vesicare 10g a day, zertec, hiprex, probiotics, inderal for blood pressure. Have recently had an optic nerve stroke, so now on statins and low dose asprin.If you put pred in the search box you will find others who tried pred and didnt have good results. I am sorry you are in such discomfort I hope things improve for you soon.

    My goodness, what a mess. I do believe the cures are often worse than the disease.
    I am doing a slow taper of the Pred. and hoping my bladder will revert to it's pre-hive self, i.e. mostly okay.
    Sorry you are having such a hard time and thanks so much for your honest reply.
    Laurie

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  • Tina2
    replied
    Re: Prednisone is working for me-that sucks!

    Hi Laurie

    Well I will say sorry because this is not a positive post. I was put on pred about 2 years ago to fight cronic inflammation of the vulva, at that point the IC had beed fairly well undercontrol. I have had IC for over 20 years. I felt fantastic on the pred, it makes your brain not feel inflammation. Then my blood pressure shot up, and I was told to stop the pred that is when things got bad. I ended up with the worst flare in my life as the brain again felt the inflammation. So bad I ended up in hospital. Since then it has been to be honest a nightmare of seeing different doctors, trying different thing to try to settle it all down. Now on Fluconozol 50g a day, vesicare 10g a day, zertec, hiprex, probiotics, inderal for blood pressure. Have recently had an optic nerve stroke, so now on statins and low dose asprin.If you put pred in the search box you will find others who tried pred and didnt have good results. I am sorry you are in such discomfort I hope things improve for you soon.

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  • bubbe1
    replied
    Re: Prednisone is working for me-that sucks!

    Hi,

    Sorry for this long, and somehwat confusing post.

    I was given Prednisone for hives,(chronic). I started at 10mg per day and was doing okay, though hives were the same.

    However, after about a week, I began to have trouble sleeping,(btw, also taking Zyrtec and Singulair).
    My PCP told me to continue the Pred. but take it earlier in the day. That didn't help, so he then told me to go down to 7.5 mg a day. Tried that for 3 days, per his instructions, and then down to 5 mg a day. Hives started to get worse, so PCP told me to go back up to 10mg. Poor adrenals! Anyway, yesterday,(Tues), I started to have some nasty bladder problems. I should mention that my IC has been pretty much under control for the last two years, no pain or difficulty urinating, just getting up several times at night. Now I can't stop peeing and/or feeling like I have to pee and can't sleep because every time I lie down, not only do my hives itch more,(especially my feet), but my bladder forces me to get right back up.

    This evening I took two Vistarils, 4 hours apart, per allergist's suggestion( I should mention that I am super sensitive to med)s. Didn't help anything.

    In other words, I'm a mess. Itchy, can't put shoes on because of hives, can't sleep at all and don't know what to do with myself.

    Has anyone had Pred or Zyrtec cause bladder problems? BTW, no infection, they checked.

    Spoke to my original allergist this evening, who said I should go back down to 7.5 mg on the Pred, take vistaril(sp?) in the evening and Zyrtec in the morning and stop the Singulair that I was also taking. she made an appt. for me to see the allergist at Kaiser who specializes in difficult hive cases, but that's not until next week.

    If you've read this far, thank you for taking the time. I apologize for the rambling.

    Any thoughts or shared experiences would be much appreciated.

    Laurie

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  • JodiLLL
    replied
    Re: Prednisone is working for me-that sucks!

    Thank you guys for the reply. I did not know that is what it does. I guess I'm better off trying to find a natural supplement. I just thought that since my symptoms came after I got a tetanus shot, the shot may have triggered my immune system to be active and that the prednisone would calm it down? Not sure if it's correct but our dog had an autoimmune response to a rabies shot and they put her on 2 weeks of prednisone and it saved her.

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  • Tina2
    replied
    Re: Prednisone is working for me-that sucks!

    Be VERY careful with this drug, my doctor explain what it does is shut down your ability to feel inflamation it does not fix the problem, so if you have bad inflamation you wont know about it. Then it causes all sorts of horrid side effects so you have to wean off it then the inflamation you had not been feeling KICKS IN BIG TIME.

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  • miniguinea73
    replied
    Re: Prednisone is working for me-that sucks!

    Prednisone is one of those drugs that you have to wean off of, isn't it? Be careful!

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  • JodiLLL
    replied
    Re: Prednisone is working for me-that sucks!

    Originally posted by RagnarsCricket View Post
    My Rheum. prescribed me prednisone to take daily for Lupus recently after being diagnosed. Almost immediately I was feeling better - everywhere. My bladder feels so awesome. It is almost like the IC left me completely. I am on my 4th week of this new med and I couldn't be happier.

    What dosage of prednisone did you take and is it still helping? I had a bad reaction to a tetanus shot and now my IC is horrible. I'm trying to see what I can take to help with calming everything down. Please let me know what the dose is and if it is still helping you. Thank you!!!

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  • KathiB
    replied
    I have the opposite problem. Right now, prednisone is the only thing that helps my Ulcerative Colitis/diarrhea. I go through a cycle - 3 times so far this year. My symptoms get worse and worse to the point where I can't eat. I get hospitalized, they put me on prednisone. My diarrhea improves for the 5 weeks I'm on pred and a couple of weeks afterwards, then I gradually start getting worse and worse bowel symptoms, and I get hospitalized again. Repeat.

    During the time I'm on prednisone, I also need pretty strong painkillers to counteract the severe bladder pain I experience.

    I wanted to share this story to show that prednisone doesn't help everyone with IC. And like others have said, I hate the drug. It causes all sorts of nastiness, although when you feel like you're on death's doorstep (like me with my UC, and the original poster with her IC) you are sometimes willing to try anything to feel better at the moment.

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  • Tina2
    replied
    Hi All. I have had major inflamation in the genital area for over 15 years ! Nothing seemed to help, then the gynocologist put me on this drug. Wow yes the IC improved so much i felt like i finally had a life - for the first week. The the side effects kicked in. Shaking, and skyrocketing blood pressue. Started on 40mg, i cut it to 20 after the first week ! then down to 5mg per day and ic impovement still holding but shaking getting worse so i cut it to 2.5mg over the weekend. It is only 5 weeks since i started this medication, i have spent the weekend in bed ! IC went wild, freezing cold and shaking. Saw my doctor this morning who said my body had gone into shock and i needed to go back onto the 5 mg again for at least a week then "try again" it is like i am on this awful medication and in just 5 weeks my body is totally addicted. It could take months to get off it and i totally fear that it has totally destroyed my bodies ability to fight inflamation. My advise stay as far away from it as you can.

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