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    Old 01-27-2008, 10:16 AM   #1
    wcb7962
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    Prednisone causing problems

    I've been on Prednisone for about 10 months for low platelets caused by ITP. When they took me off of it about 3 months ago my platelet count immediately dropped so I had to start taking it again. A splenectomy is my only alternative, but with no insurance and very little money, I'll have to remain on Prednisone for now. About 2 months ago I started having pain on my right side. My doctor saisd it could be either a gall stone, inflammation of gall bladder, or an ulcer. Caused by the Prednisone. I had a sonogram a week later, but never got the results. I went for my usual blood test a week later and inquired about the results, but my doctor wasn't in that day. I haven't been back due to financial reasons. Anyone else have similar pain or any other bad effects from Prednisone?

     
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    Old 01-29-2008, 09:44 AM   #2
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    Re: Prednisone causing problems

    I have been on and off Pred for ITP and Hemolytic anemia for years. Being on Prednisone is horrible and tapering off it is even worse. What is your count?

    I had a splenectomy in 1995 for my low platelets. They told me that it would cure me. It worked for 8 years, and then after a bout of flu, my platelets dropped again to 10K. Back on the Pred. Luckily for me they know that just 10mg of Pred can raise my counts to an acceptable level - 50K. You need to make sure they don't overtreat you. You may never be able to maintain a normal count, but that doesn't mean you can't live a normal life. I know many ITPers who live at 30K. Alot depends on the size of the platelets you do have. Some people at 20K have no bruising because they have Big platelets! This may be the case for you. Have you had much bruising?

    Don't rush to surgery! Get a second opinion before you do this! A splenectomy is not a guarantee, at all, though many times they tell you it is. There are more treatments they should explore before they resort to removing your spleen. If the splenectomy doesn't work, you'll be immuno-compromised, and then still have to take the immuno suppressive meds like Pred, which is where I am from time to time. But I'm usually in the ok zone, and in fact, sometimes my platelets now go to high without the spleen.

    Perhaps they just need to taper you more slowly from the Pred. I know it's total misery. The weight gain, joint pain, mood shifts, sleep trouble - it's rotten. Eat lots of bananas- more potassium does help during a taper. Watch your sodium, too - that can make the swelling worse.

    Just know that things WILL get better! I know, I've been there many, many times. Each time I think it won't get better ever, but slowly it does.

    Don't let them take your spleen yet! Write back and let me know what your count is!

    Jill

     
    Old 02-08-2008, 10:26 PM   #3
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    Re: Prednisone causing problems

    I haven't been back to the doctor yet, but last time I had blood work my platelet count was 85. That's a little higher than usual, it's usually around 60, as long as I take 20mg of prednisone daily. I've continued to take it even though I haven't been seeing the doctor. I guess I'll go back as soon as I need a refill. If I quit taking it my platelet count drops immediately, when they weaned me off of it a few months ago it dropped to 26 in two weeks. He told me that in most cases if a person responds to Prednisone that the splenectomy usually fixed the problem. I don't know what to do. All I know is that this disorder is making it really hard for me to do my job (I work in construction), I'm always tired, can't seem to think straight anymore, I don't sleep well, I've been having vision problems, this mysterious pain in my right side (gall bladder), I never feel 100% at all. And I'm hypothyroid on top of all that. Having no insurance sure doesn't help matters either.

     
    Old 02-09-2008, 04:48 PM   #4
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    Re: Prednisone causing problems

    I had taken Prednisone before due to sever allergies. Within a matter of a few weeks my right side hurt bad. They could not find anything wrong. Finally after finding the right doctor he said that the medication was too much for me. It was too potent and that I needed to reduce the dosage a tiny bit. Its a hard drug for the liver to process. Luckily I was able to completely get off the drug and find alternate medication. But for you I would start naturally giving your liver the vitamins it needs to de- tox itself. Most doctors DO NOT BELIEVE that de toxing/cleansing is even a valid theory. But after having fresh sqeezed lemon in the morning for a week (then a week off then a week on) it helped tremendously. So did herbal teas such as marshmallow root tea. It is a wonderful tea (u can buy in pill form) to help lubricate your stomach before swallowing the drug! Its all natural. Make sure u wait a little while before taking your actual medication! I'd say an hour. Otherwise...to be honest MOST DOCTORS will look at you like your wacked cause they can't find a medical problem. The health food store clerk would know for sure
    Regards and hugs

     
    Old 02-10-2008, 08:09 AM   #5
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    Re: Prednisone causing problems

    wcb-

    That is patently untrue about the relation between how a patient responds to PRed will be a predictor of how they will respond after a splectomy. I know scores of ITP patients who did well on Pred with their counts, had the splenectomy and still had low counts afterwards. Get a second opinion. This should be your last route! There are so many other treatments besides prednisone. You really need another opinion.

    Your sleep troubles, fatigue and vision troubles are all common side effects of Prednisone. I wonder if they could wean you down to a smaller dose and keep you there and see what happens for awhile. You might ask.

    Also, while I'm sure herbs and teas really help lots of people, those with ITP and other autoimmune conditions have to be so careful. Some (not all) herbal remedies have the effect of thinning the blood, which is dangerous to those with low plateles. If you go the herbal route, please check with a dr first.

    Ysaid, it's great that the herbal route worked for you - I know that some have had positive results. IT's just that ITP is a very tricky condition, because they don't know exactly what triggers the immune response.

    Jill

     
    Old 03-01-2008, 07:37 AM   #6
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    Re: Prednisone causing problems

    Thanks for the information. I finally went back and made an appointment for next week. Mainly because I'm out of Synthroid (for my hypothyroid) and also because in addition to the pain in my right side, I now have a bump, more like a bulging, right at the lower rib cage, near where the pain is. It has me very concerned. I'm hoping the sonogram they did a couple months ago may show something, but I'll probably have to have another sonogram since it's been so long. Any thoughts on what this lump might be?

     
    Old 03-01-2008, 07:47 AM   #7
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    Re: Prednisone causing problems

    I forgot to ask, what other treatments are there besides prednisone? The only other treatment I was told about is Rituxin (sp?), and it's extremely expensive, I can't afford it. The doctor told me splenectomy is my only alternative. As far as lowering dose, 20mg keeps my platelets in the 60 range, when they took me off prednisone, my platelet count dropped to 26 in less than 2 weeks. Maybe there is a slightly lower dosage that will keep my platelets in a safe range and not cause such bad side effects.

     
    Old 03-05-2008, 03:20 PM   #8
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    Re: Prednisone causing problems

    Besides Prednisone, they can do intraveneous Gamma Globulin, known as IVIG, Winwhro, Cellcept, Imuran and then, you know about Rituxan.

    The IVIG and Winwhro are really stop gap treatments - they usually dont' raise your counts for the long haul. They are great in emergencies, though.

    If your count is hovering at 85, you might want to consider not treating. Of course, if you taper off Pred, what happens? How fast do you crash?

    You need a dr that isn't so Prednisone happy. Some drs are content to leave us on Pred for as long as it works. That has bad consequences, obviously.

    Take care,
    Jill

     
    Old 03-09-2008, 01:55 PM   #9
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    Re: Prednisone causing problems

    Well I went back to the doctor last week. It seems my regular doc whom I've been seeing for the past 10 months has quit. I saw an intern then she referrd me to a new doctor. They both seemed suprised that I couldn't get the Rituxan, they felt like the other doctor maybe didn't follow through with the paperwork or something. They told me that it is common for people who make less than $100,000 a year to get it donated by the pharmaceutical company. I make much less than that, so they seem to think I can get it. I'm keeping my fingers crossed.

     
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