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I'm a 34 year old petite 110 lb female and have been on Prednison...

Posted at 5:26 PM on Jul 20, 2007 by jennyc, #22426
I'm a 34 year old petite 110 lb female and have been on Prednisone for 7 weeks now for a kidney disease (Focal Segmental Glomerulosclerosis). The treatment is supposed to be 3-4 months to see if I go into remission. If not, then I'm "steroid resistant" and they will have to move to a more aggressive treatment (a type of chemo). So I'm praying that this prednisone works!! The first 2 weeks were a peice of case, then I developed many side effects, but the following being the most troublesome: - 2 weeks - Edema. I got really bad fluid retention in my lower body and was put on a diuretic. A few days later my heart started pounding so hard I thought it would pop right out of my chest. Well turns out I was totally dehydrated from the diuretic so I'm off that now but the edema seems to be under control anyway (following a low-sodium/low carb diet). At the same time as the edema my skin dried right up too, and I need to put moisturizer on all the time. Even when I bend over I feel the skin on my back stretching. - 2 weeks - Bloating. Really bad bloating. I'm bloated constantly now. Eating a low sodium diet helps, but not much. At night I weigh 5 lbs more than I do in the morning. I have terrible gas (burping mostly) all of the time. Sometimes it looks like I'm 6 months pregnant! And I'm sure people think I am because as I mentioned I'm normally thin and now I have to wear looser clothing to hide my belly, which doesn't really work and just looks obvious. - 3 weeks - Sore knees. It feels like there's something growing in between my kneecaps that make it very difficult to climb stairs and it feels spongy when I walk. I can not put any pressure on my knees, I can't squat down, bend to pick something up, kneel, anything. And it gets worse at night. - 4 week - Moonface. And my face has been blowing up like a balloon ever since. As I sit here and type I can actually feel it throbbing and growing still. I've got fat on my neck under my chin now that actually feels like it's choking me if I sit hunched over. I'm finding the moonface very difficult to cope with. I do not like to look in the mirror any more. I feel like a candy apple. - 4 weeks - Cramps. Terrible terrible hand and feet cramps. Sometimes if I'm using my hands to chop vegetables or write or even use a fork, my hand cramps up like a lobster claw. I try to use the other hand then the same thing. And then almost every day, my feet. First one, then the other. Excruitiating cramps that seem to go in 15 minute intervals that make it impossible to walk, stand, sit, anything. - 4 weeks - Very moody and aggitated. I am usually very easy going, now i have patience for nothing. I will be in a good mood one minute, the next I feel like I can kill someone. My boyfirend and our dogs are being very patient with me... I just hope they know it's the drugs not me! I just don't seem to have any control over my emotions. - 5 weeks - Extreme fatigue. I used to have lots of energy, especially at the beginning of my Prednisone journey. But now I'm just wasted all of the time. I walk to and from work and the last couple weeks I want to just lay down on the side of the road and have a nap as I walk home. I used to do pilates (as much as possible with the sore knees) but it's too hard now. And forget about any elliptical training or cycling. It's enough just to get to and from work and I'm just exhausted. There are more issues and I could go on forever, but those are the most troublesome. I just try so hard to stay positive but it's very hard sometimes. I pray that this is working, and that it is not all for not. I can't wait to be off these drugs, and my heart goes out to each and every one of you enduring the same thing and pray that it works for your too. Good luck everyone. :)J
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Reply over 2 years ago on Jul 20, 2007 by healthresearchnut, #825

Dear J,
What dosage are you taking? From what I've been reading anything above 6mg, which is equal to 30mg HC could cause side effects. You may need to take more than this to begin with to get things under control, but after a period you should definitely wean down to 6mg. I cannot say how important this is: You Need TO Read Dr. McK Jefferies book, "The Safe Uses of Cortisol" . It is expensive ($45), buy it from the publisher. People and doctors who are SUCCESSFULLY treating using steroids are following his 1,000 years of patient success protocols. He is not some fringe witch doctor, solid medical backgound, trained and studied under some of the best - before big pharma began corrupting medicine in this country. Good luck.

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Reply over 2 years ago on Jul 22, 2007 by 47140, #840

I wish you good luck with the Prednisone. I would like to know what was your starting doseage and how are you being tapered?

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Reply over 2 years ago on Jul 22, 2007 by angie2007, #845

Hi Jenny,
I am so sorry that you are experiencing these physical and mental difficulties. I thought I was the only one going though these strange happenings. The predisone is somewhat of a miracles drugs, but the side effects can be devastating. I have also seen a great change in my body. I was on predisone because of a skin disorder. I hated being on it. I was detemined to get off of it, so I did a lot of praying and had a lot of my church members praying for me. God heard my cry. It made me overeat and I couldn't sleep. My skin also become very dry, especially my face. I have been off of the predisone for about 3 months and I am finally getting back to normal. I am sure we both will get through this uncomfortable phrase in our lives. Nothing last forever and this too shall pass. Your posting has really helped me a lot. Update me on how you are doing. I will keep you in my prayers. Hang in there. Read Romans 8:28 and be encouraged. Angie

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Reply over 2 years ago on Aug 08, 2007 by jennyc, #1118

I'm taking 50mg/day. I saw the doctor last week and I need to be on this dosage for at least another 2 months before they will start working on my disease. If it's not working by then, then it's not going to work at all. After that there will be a tapering period of a few months. So I'm looking at probably another 5-6 months all together on the drugs. My bloating is still bad, but I started taking digestic enzymes and probiotics with my meals and it helps. Despite excercise and eating well, I'm up 8lbs, which really shows on my small frame... I got asked if I were pregnant yesterday. SUCKS!! Thanks all for your replys.... hang in there. Jenny

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