My spleen has recently become enlarged due to sarcoid and the doc said I should do 30mg for 6 mos and 15mg for another 6 mos.Has anybody else taken this drug for this period of time. I worry about the side effects with this drug. he longest I have ever had to take this this drug until now is 6 mos
my motherinlaw took prednisone for years after organ transplant, you just have to weigh the risks versus benefits
Steelerfan,
I took predinsone for three years, although not at those levels.
I took 60mg for two weeks, then the doc lowered my levels slowly until I got to 10mg... inwhich I took for the balance of the three years. I weened myself off from the 10mg, and was glad to be off of it.
I was also put on hydroxychloroquine for six months, during that time.
My face swelled up quite a bit while taking it, although I can't say that the swelling went down... It is still pretty swollen now.
I was on 40 mg for a year and a half. Side effects were bad. New doctor took me off and put me on methatrexate. Everything is much better now but were hard to get the weight off.
I've got you all beat! I've been on it nonstop for 11 years! Started at 600 mgs a day and have been up and down on it for 11 years. YUK!! But it's better then having a swollen brain that you completely lose 5 months of your life! Of course, maybe the kids enjoyed it!LOL Last year at this time I was released from the hospital on 180 a day. Dropping it 5 mgs. a month. Did that for a while and then everything went nuts. Retaining fluids so bad my leg calves starting leaking fluid so I went to dropping 1 mg. a month and now I'm down to 5 and I'll stay there. I really think if I murdered someone when I'm on high dosages of it they wouldn't be able to touch me! Been worse, been better, but I just glad to be alive getting hugs from my 6 grandbabies! It could be worse!
Hugs, Kathy
When first diagnosed I was on 60 mg of Pred for 3 years I gained alot of wait which I expected but then my teeth started breaking. One of the side effects of steriods is that it depleets the calcium in your bones. At 39 I have a complete top plate of dentures and about to get the bottem plate done.
I was on 40mg for a year and a half, now reducing to be off by November. So it will be 2 years total. I had terrible side effects but not really any weight gain, just the poofy face and hump on upper back. I have eaten VERY little salt or sugar over the past two years, and I think that really helped to keep the weight in check and maybe less pain in joints although that is pretty bad right now...
Good luck.
I had my spleen removed and often think I wish I hadn't done that...
I have been on Prednisone for for 9 months now and have just been tapererd down to 5 mg. a day. I can tell a difference already. We did get a bit of cooler weather and it has helped. I have also lost about 25 lbs. and my doctor said that the breathing test I did two weeks ago was better than someone without a lung condition. He had to write a letter for me for something personal and wrote three different diagnosis? I just know some days are better than others ,although I have noticed being sore underneath my arms-lymph nodes maybe? Well, I am just grateful to God that I am doing better and pray that I will be off of it soon.
I started on 40mgs a day after my lung biopsy in 2003. Got off by the end of that year and was in remission till 2005. I retired, moved to Michigan and remodeled a house. Not the smartest thing to do with Sarcoid. It came back with a vengence along with multiple chemicle sensitivity and have been on up and down doses of Pred for 2 years. I am at 4mgs and trying come down very slow. I go down 1/2 mg every 3 months. If not my body goes nuts and I have to go back up.
Bunkie.
I am still taking them and its been about 4 years now, everytime that they bring it down I get very sick and have to be place into the hospital to get heavy dose so I can breath. I will get were I cant lay on my back when its bad. I know this isnt what you want to hear but your lucky you get six months I get it till I can afford a lung but I know I wont get one so they make me breath and make me fat. But I live another day.
I was on prednisone for almost 2 years. I was as high as 60mg and tried to come off about 4 times, reducing the mg slowly down to 5 mg. Every time I came totally off, the coughing would come back. Recently (April) I switched doctors and came off the prednisone. I use 2 different inhalers daily (AM & PM) & a pill that I inhale as an anti inflammatory. My pulmonary function tests are good , but I still cough frequently.
I am afraid to go back on the prednisone because of the long term side effects. The weight & puffiness does comes off rather quickly once you are off. The side effects must be watched closely (via blood tests , cat skans, Bone density scans and doctor visits). Make sure you tell the doctor everything & keep a journal.
I cough, but other than that am ok.
Hello,
I've been taking Prednisone for 15 months now. I also take 20mg weekly of Methotrexate. I was down to 5mg of Pred. in hopes of getting off but reducing the dosage has put me back in a major flare. So now I'm back up to 12.5mg. I did orginally start out on 30mg but it gave me secondary glaucoma, so I can't take too high of a dose.
I weigh the same as I did last year, the only thing that I have noticed is that it has caused a little bit of fat around my waist and the back of my neck.
I look forward to the day of remission so I no longer have to take Prednisone, but I am glad to know that it helps me when I'm feeling so sick.
I hope the Pred does the trick for your spleen.
Take care,
TeresaK
I was on it for almost two years! Never again. The withdrawal period was very difficult for me. So the negative effects of the drug and the withdrawal effects were much worse than the good it did. I do think it has done some good for a lot of folks, but it is a nasty drug to deal with
Good luck
Laura
I was on it for about a year and a half off and on. I weighed 120 pounds when I started taking it, I now weigh 175 pounds and have been off of it for 6 months!!! It caused me alot of problems when I was on it. I had to see a heart specialist for rapid heartbeat and the doctor had to put me on xanax because it caused me to have anxiety. I was on it for I.T.P. and I refuse to go back on it!!!
I have been on Prednisone for 8 years. I take 40 - 60 mg a day and when I try to decrease it I usually get down to 10mg/day and I get very sick, once even comatose. I end up in the hospital receiving large doses IV. I too have gained weight (over 200 pounds). The first thing I notice before I get sick is difficulty speaking. My speech gets very choppy. Some say I sound like I stutter. To me it sounds as if I cannot get the word started. I have tremors (I hit about forty computer keys at the same time.) I have what I feel are small seizures. I feel like everything just abruptly stops and I will suddenly drop whatever is in my hands or even fall to the ground. They are doing an EEG next week.
My legs are constantly swollen. Now I have swelling up to my hips. The legs are weeping fluid in several differnet spots. I have Cellulitis most of the time. The doctor says I have about 40 pounds of fluid to get rid of. They have me on 160mg of lasix twice a day now plus other diuretics. So far, not working. I see him again on Monday. I have to use a walker to get around and I can't breathe very well. I have NeuroSarc and they tell me that it isn't in my lungs but I have developed Asthma, Pulmonary hypertension, and a bad heart valve so I doubt their diagnosis of no pulmonary Sarc. Anyway, I am glad to be alive and I hope to celebrate my 100th birthday with my great-great grandchildren and have a virtual birthday party with all the people here online.
God bless us all,
Barb
I was on very high doses of predisone for 5 years and I became toxic.
my Neuro in fall of 2001 finally put me on Imuran and plaquneil..
But I would not recommend long term roids.
Shadia
I was diagnosed in June of 2005, and immediately put on 60mg a day of Pred. I stayed at 60 a day for a year and a half. I am currently down to 10 a day. I experienced the fluid leaking from my shins, the weight gain, and who knows what else. When i went on the Pred, I weighed 220lbs. In less than a year I topped out at 310lbs. I haven't worked since Dec of 2005, so I got very little exercise. I have neuro sarc and have alot of problems with my balance and coordination. Would randomly fall down, became a safety risk where I worked. I'm still on the Pred, at 10mg a day, and my neurologist recently told me that I should stay at that level to prevent any flare ups. If Sarc isn't curable, then will I be on the drug forever? Oh well.
I have been on prednisone since being diagnosed 19 years ago, although I am on a small dose now, 6 mg every other day.
18 Months after they removed my spleen
I just finished my "taper" to none after eight years. It was only bad during the first two to three years when my dose was up to 60 mg per day. One of my worst side-effects was bone fractures, especially those of my lower back which have left me with chronic pain.
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