Wanting my life back after prednisone

Well, I am coming down off prednisone despite what my doctor wants. I made it to 5 months at 60mg daily. Never had mood changes, but other side effects have made it so horrible that I feel like I have no life. I sometimes wonder how great this remission is supposed to be if I can't walk, see, work, etc. Major rapid weight gain. No doubt it is severe Cushings. I am now on 30mg. I did 2 wks at 40 then down to 30 and wanting to go down to 20 soon. I have 4 children. 60mg had me numb from head to toe. I look like the Michelin Man with my arms out to the side, huge rolls around my neck making it difficult to breathe. I can't get off this quick enough. I have appt with Neph on 23rd, so we'll check urine then. I feel 1000x better than I did a month ago and I still feel horrible-go figure. This is the slowest my life has gone in the last 20 years. I am hanging in there mentally, but losing patience. Diagnosed with FSGS in March/April. I am more worried about having another episode of CHF (thats how I found out about fsgs) due to the 65 lb weight gain in my upper body. I see that alot of people are treated by Endocrinologists along with there nephs. Tried making appt yesterday and they are waiting for my last labs. Glad I was reccommended to this site--it seems very helpful and comforting at the same time. I just want to be able to play with my 3 year old again.

Andrea

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I feel you on this one! I hate the prednisone.... The doctors keep wanting to put me on it but after a year and a half on being on them... I was like you so big and bloated and horrible feeling. I am not on cyclosproine and that is going okay. I am not responding as fast, but it is worth it for how I look and feel not being on the prednisone. If I don't go into full remission soon they are going to add immurand. Then they are going to taper me off of the cyclosporine and keep me on the immurand for about 2-4 years. This is because I relapse every time they try to take me off of meds. Hope this helps, and know there are a TON of people that hate the steroids too!

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Andrea!!!

I am so glad that you came here! Sorry that I haven't IM'ed you on the other site, but I have been in a hell of my own. I have degenerative disc & joint disease in my lumbar spine and my back decided to go out for 2 weeks.....couldn't move without a walker and even breathing caused immense pain. So, off to the pain clinic for my 8 nerve block injections! Those things are horrid, but thank God for the drug Versid....that's all I can say! lol I don't know what I am going to do about the back, because arthritis just gets worse and we "kidney" peeps can't take the appropriate meds :-(.

Anyway.....how are things with you? Getting better? I will add you as a friend, in case you would like to IM sometimes. You hang in there and I think that an edocrinologist would do a lot of good for you.

Lee

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I hate pred, I am down to 5mg/2.5mg alt days for the next few weeks, then will be 2.5mg a day for a month then 2.5mg every other day for a month. I would do a very slow taper, especially after being on it for so long. I would taper by 5mg every two weeks once I got down to 20mg.

I have cushingoid sydrome too. Also my joints are very painful when I walk and when I wake up in the morning my joints hurt very badly, I did not feel this until I got below 20mg. It is a side effect of coming off pred. I have been at 5mg for a month now and today my joints felt slightly better.

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I am gonna go to 20 mg today and stay until I see Dr. on the 23rd. Not looking forward to joint pain. I had horrible joint/muscle pain where I was crawling about a month ago. I thought it was pred, but ended up being Lipitor, so we stopped that. I just want to be able to breath better which I am hoping will come once some weight starts to come off especially from my neck. From all posts I've read, it seems as though side effects start to minimize at or below 10mg. Did you find this to be true in your case? Do you go to an endo doc? I am glad you are feeling better. I know everything in good time--one day at a time.

Andrea

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I'll just jump on the wagon about hating prednisone. Im on 30 mg alt days. They had to reduce it for me because the side effects were severe. I still have mood swings and I feel absolutely horrible being on it. It doesnt seem to be helping me anyways... my condition is worse than when I was first diagnosed. Im glad to hear that you are feeling better than what you were. I understand about losing patience but tryin to keep it together mentally. I was diagnosed march/april also but with membranous nephropathy.

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yeah I get out of breath doing laundry now.......

My friends say they can see a difference in my face, I don't know if it's wishful thinking or not but do think it is slightly better. I think I will have to be off pred completely for 3-6 months to be back to 'normal'.

Mid Dec I will be off pred completely, YAY!

Andisc, have you talked to your Doc about tekturna? That is what really pushed my proteins down to 1, I have my labs next week and am so nervous and excited. I hope he tells me on 10/22 that I am in remission or at least that my proteins have not gone up. I think I will be so upset I will hurl all over myself.

The last few times i've gone to see my Neph I get myself so worked up that I am practially bawling entering the office. I hold it together so well between each visit, it's like it all just comes out then

No I do not see an endo doc, I will bring up at my next appt.

What are your proteins and albumin at?

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Hi Andrea,

I am going through exactly the same thing! And while I'm in a remission and everything looks good, I still feel so fatigued! I even went as far as having a gastric band put around my stomach to help control the weight gain from the Cushings Syndrome thinking maybe it was just the weight getting to me.

I am slowing starting to look a little more normal everyday. However, my endocrinologist tells me I am experiencing a severe case of Steriod Withdrawal Syndrome, even with my andrenal function recovering. He said they treat it with NSAIDs but doesn't want me to take them for fear of interfering with my remission so I just have to get through it.

I'd love to know what youre doctors are telling you.

Sincerely,

Christi

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To all who have been on prednisone I warn you. I am having surgery next week for my pd dialysis to be installed. I have also had a sever pain in my upper right shoulder for more than a year. I was finally able to get an mri done. I did not have prior insurance and could not pay for the exam. Anyway, I met with the doctor yesterday and he told me I have Osteo Necrosis of the head and shoulder. I look at him and asked if it was contagious. He said no, but it is a direct result of prolonged prednisone usage. Basically, the ball in my upper right shoulder was not getting enough blood due to the pred. It killed of bone tissue by about 30%, and it will never recover. After I am on dialysis for a few months, I will have to have surgery for my shoulder to replace the ball. Doc says I should be lucky to comb my hair, let alone lift anything or throw a ball to my sons. Way to go MEDS. Everyone, please be careful and don't let this happen to you. Get your joints and bones checked if they are hurting. They are not suppose to hurt. Good luck to everyone.

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Thanks for the replies. My neph does not even know I took myself down to 20mg. He is 2 1/2 hrs away and I see him every 2 months. Still waiting for call from endo for an appt. I begged via e-mail to come off pred after 5 months. He said to do what I had to do but keep as close to 60mg as possible. Yeah right!! easier said than done. When you can't properly bathe or take care of your children because of constant numbness, unsteadiness, muscle ache then tell me. It kept getting worse, and I would rather be dead than think it could have gotten any worse. I wish you all the luck with your surgery rferrerj and your upcoming dialysis. Knowing that dialysis or transplant is in my future and having a family of 6 myself, I understand your frustrations. I also sometimes think that at least there is closure in knowing what is. This unknown is not healthy. Sometimes having no choice gives you less options to weigh and even though depressing, makes you move in a direction one way or another. I don't even know if that makes sense to anyone, but it does to me. I felt so bad this morning, I made sure to have my husband call every 2 hrs just to make sure I was still alive. Go figure!!

A

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Andrea, I think you should read what I copied from the Mayo Clinic at www.mayoclinic.com below because i feel you are on an dangerous path to withdraw yourself without medical supervision!

Mayo Clinic rheumatologist April Chang-Miller, M.D., and colleagues answer select questions from readers.
Answer
If prednisone isn't discontinued gradually, you run the risk of developing prednisone withdrawal symptoms. So you shouldn't stop taking the drug without first consulting your doctor.

Prednisone is corticosteroid medication used to treat many conditions, including arthritis and asthma. Prednisone is similar to cortisol, a hormone naturally made by your adrenal glands. However, the amount of prednisone used to treat underlying disease is much greater than the amount of cortisol produced by your body.

Because long-term use of prednisone can cause serious side effects, doctors try to use the lowest dose possible for the shortest time possible. Still, there are instances when long-term prednisone therapy is needed.

When you take prednisone for a prolonged period, your adrenal glands stop making cortisol. After you stop taking prednisone, your adrenal glands need time to resume their normal function. If you abruptly stop taking the drug or taper off too quickly, you will develop symptoms of prednisone withdrawal — also known as cortisol deficiency. Such symptoms include:

Severe fatigue
Headaches
Lightheadedness when standing (low blood pressure)
Nausea or vomiting
Body aches
The amount of time it takes to taper off prednisone depends on several factors: the disease being treated, the dose and duration of use, and other medical considerations. A full recovery can take anywhere from a week to several months. If you experience prednisone withdrawal symptoms as you are tapering off the drug, contact your doctor.

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Thanks for the forward. I am aware of the danger of withdrawling. I am staying where I am at until next visit or until I see Endo. I was having more severe symptoms on it as time went by. Just when I thought it could not get worse--it got really bad. I am not having any major withdrawl syptoms as of yet. I know from this point of going below 20mg , it shoud be down in small increments with monitoring making sure my adrenal system is starting to function on its own.

The major problem is my time between 2 month visits to my neph--I had significant changes with meds. The doc had a look on his face like he saw a ghost when he opened the door. He then said he didn't expect me to have such severe side effects. Sad part is, that was 2 months ago--I would like to look and feel like that as to compared to what I was 3-4 weeks ago. I definitely feel better, but no where near normal--and I am sure that is months down the road if even possible.

Andrea

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Your symptoms and experiences are so similar to mine. Last October after being on 60 mg of pred for five months it was clear it was not working, I had gained 50 pounds and was unrecognizable. I was so embarrassed to see people I knew who didn't know about my disease. They would look horrified when they realized it was me. From head to toe I felt horrible, unbearable. I told my neph I had to come off the drug. She resisted, saying they could lower it but had to keep me on it because the next treatment was going to be pred + cyclosporine. I got down to 16 mg pred with cyclosporine and tried that for 12 weeks. No improvement, in fact I was getting worse and it was making my blood pressure go way high. I decided to come off of it all. Since she wasn't really on board with me coming off the medications, she basically left it up to me and said "do it slowly." My internist suggested 5 mg every two weeks. I thought I was going slow. (as you get closer to the end you have to go even slower) I was gradually feeling worse and worse --I was complaining to my doctors that I was weak, nauseous, no appetite, my hair was falling out and even my legs were collapsing out from under, yet not one recognized it was steroid withdrawal symptoms! I ended up in the hospital and they had to put me back up to 40 and start the weaning all over again. This was last February. I got an endocrinologist who is wonderful and has held my hand as I've come off it this time. I've been completely off it since September 15 (almost a year after my first declaration I was getting off this stuff.)

I'm telling you this story for two reasons: 1) to say to be careful (people told me that too, but I didn't get it and didn't even realize why I was in trouble when I was in the middle of it.) and 2) to give you hope. Even though I've never reached remission in the 18 months since I've been diagnosed with this disease MCD, I feel better simply because I'm not on those horrible drugs that were not working for me. I thought I was feeling so intolerably bad because of my disease, but it was the medication. I don't know what I'm going to do next, (I also just finished a 6 month trial of cellcept that didn't work) but at least each day I'm not suffering to the extent that I was. I'm not feeling like my old self, but my symptoms are way more tolerable.

all the best

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Thank you and I will be careful. I have read and researched so much about the weaning. I am awaiting appt with Endocrinoligt in my area, so I don't have to go 2 1/2 hrs away where my neph is. I want to be under close watch.

At least I don't feel like my upper arms are going to split anymore. I feel like if I were poked with a pin, I would sprout like the Trevi Fountain. I guess I feel like I know what my body can take and what it can't. I felt like I was slowly dying at 60mg after 5 months, but am feeling better with some withdrawl symptoms but not severe.

I have FSGS and am responding to the meds. Last labs showed normal function and 384 protein on my 24 hr. Neph is really happy, and wanted me to stay at 60. I, in turn could barely walk, breathe properly, bathe self, hold onto things etc and it was getting worse. Trading one for the other--me sitting in a recliner the rest of my life which is where I felt I was headed just isn't what I want. I know I will never feel normal again, but I would like to be able to attend kids functions, work, sleep in bed, dry my hair.

I know it's a long road--just home time goes by quickly while this medication is in my system.Thanks for giving me hope and letting me know it does get better.


andi

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Hello there and good morning all! My Neph told me that I should wean off of pred at a rate of 5 mg. every 7 days to prevent adrenal gland failure. It seemed like it took forever, but in the end it was worth not having something else go south on me. I wish you the best of luck.

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Hi

Thank you Andi for posting this discussion at least now I know I am not going mental :). I have decided (against my nephs advice but with my GPs support) to reduce my dose of pred. I am doing it 1mg a fortnight and am now down to 8mg. I see my neph in 2 weeks time and if I am still in remission then I will continue to reduce the pred to 5 mg before another review. I am sooo sick of being tired and overweight. I went from a very healthy size 8 to a size 12 in the space of 3 weeks and my nephs response was to "eat 3 small meals a day". I was nearly in tears when he said it to me. I keep asking about the treatment for cushings but both my GP and neph keep saying "I'll get used to it" even though my ACTH levels are less then .3 now. Very frustrating.

I will you all the best Andi

Nat

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Nash,

I went from a size 6 to my husbands size 40 jeans. Talk about huge. With the blessing of my Endocrinologist-she is letting me stay at 2.5 mg even thought I failed my ACTH test. I take another on Thursday. I had no reversal of symptoms at 10 of 7.5 or even 5mg. I was recently diagnosed with severe memory loss. I know it is this medication and severe Cushing's. I don't want to generate any more problems. Since going to 2.5 mg--I have lost 9 lbs and feel better. I am aware that I have to carry and triple my dose if I have any trauma. I do feel a liitle more in control of myself. Wish me luck on Thursday.

I look back to the days not so long ago and can't believe how bad I was. This is like heaven and I still have a way to go. My neph just turns his head when he sees me and was upset I went to an Endo.

I am totally aware that everyone is different and I do not recommend anyone going down on their own. I however had a different situation where my doctor totally ignored my requests. He is hours away and just wanted me to stick out the 6 months to get to remission at whatever cost. I should have been under care of GP and Endo at same time.

Good luck

Andrea

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