Long-term Prednisone?

[chaospearl]

I'm honestly not expecting much of a response on this one, but I have to ask. Is there anybody else out there who's been on long-term prednisone therapy? I mean -- as in 10+ years. Pred is a nasty drug that's definitely NOT recommended to be taken for long periods unless absolutely necessary, and most of the people who fall into that category are extremely heavily disabled with conditions that are severe enough to pretty much blot out most of the otherwise more noticable effects of long-term prednisone.

I've had a lot of different emotional and physical issues over the years, mainly undiagnosed and untreated because I never realized they weren't normal -- either normal overall, or at least normal for someone with my medical history. And the more research I do into the effects of cortisol on the body, the more everything looks SO familiar, and I end up thinking "so THAT'S why..." or even recognizing problems\issues that I didn't understand weren't normal until I saw them on a list of cortisol-induced symptoms.

At this point I'd just really like to talk to somebody else who's dealt with these things, and I don't know whether to be sad or happy that it turns out I can't find anybody else who's been forced to take this horrible drug for more than a few months at a time.

Prednisone ruined my life. Literally.

Jenni

 

[Judy Judy Judy]

I haven't took prednisone for more than a couple of months but I was curious as to the long term effects of this drug, could you please share with me some of the effects?

I'm sorry you are having so much trouble, I'm going though something as well but not to this level.

 

[Michigan]

My mom started taking it in her late thirties until she died at the age of 76. She had thin skin from taking it and would bleed under the skin if she banged herself on something.

 

[maxiesmom]

Please don't think that I mean any kind of offence by this.

My only long term experience with prednisone was with my dog Maxine. She was diagnosed with Asthma at about 7 months of age. She was on it her whole life, until she died at 7yrs. Prednisone is a great drug for controlling Asthma, but it is very hard on the system. It does horrible things to the liver and kidneys. It makes you drink constantly and eat and eat. I know with Max, the vet was constantly trying to get her off of it. She had to take a pill every day. But we could not wean her off of it without her breathing becoming very distressed.

I was even buying herbal supplements to help boost her immune system, at the suggestion of my vet. But they did little good. Her kidneys failed, and then her heart did.

Prenisone kept my Max alive for 6 1/2 years, but in the end I believed it killed her.

OP--I will say a prayer for you.

 

[quasar4legs]

Hi Jenni, I am so sorry to hear that things have not been going well for you.

My FIL has been taking prednisone about 7 years as he has pulmonary fibrosis and he takes somewhere between 25 and 30 mg on any given day.
It certainly gives him insomnia, the 'shakes' and he has very thin skin so it takes months for any wounds to heal.
Perhaps the side effect that has caused the most problems for him is that he constantly gets skin legions (sp?) that need to be be removed, so every few months he has to see the dermetologist and have them cut out or 'burnt off'.
Just this week he needed a stent put in one of the arteries to the heart and the cardiologist thinks the damage is probably related to prendisone.
Over the years my FIL has tried to reduce the prednisone but he just seems to get more lung infections and/or reduced lung function so he really has had no luck trying to reduce the dosage.

On a more positive note despite all these horrible side effects until the last year my FIL has been able to travel, play tennis and lead a fairly 'normal' life. Unfortunately, things have not been going well for him the last 6 months as his lung disease continues to progress.

I am sending you some big Koala cuddles

Trish

 

[safetymom]

My late husband was on cortisone for many many years. I would be here for a long time telling you all the side effects he had. But at the same time it helped him with his severe asthma so we put up with the side effects.

 

[Piper]

I have been on prednisone for many, many years. Every time we try to reduce it, my Lupus flares up badly. Last summer I had a very good discussion with my rheumy & the result is that we are reducing 1/2 mg every 6 to 8 weeks. So far I am down from 20 to 17.5 a day (and down 23 lbs without changing my diet!) We do regular blood tests to make sure things are not "out of whack."

I have thin skin and trouble healing as well. I also find that my energy fluctuates a lot. But both those may be from Lupus (which I call Flupus because of its tendency to make me feel achy and like I am coming down with the Flu on "good" days!)

I also have mild heart, lung and kidney problems--all related to lupus. I am trying very hard to get off the pred.......but if it doesn't happen-at least I am giving it my best shot!

 

[NiniMorris]

I have been on predisone for over 15 years. I have a form of arthritis that involves the immune system. Without it I would not be able to walk, with it (and a slew of other drugs) I can not only walk, but manage to chase my two foster kids around! (and my new grand daughter!)

I chose not to think of the drugs in what it could take away from me, but rather in what it could give me. The doctors all thought I would be in a wheelchair a long time ago. I managed to find a great doctor who listened to me, then told me all my options, and TOGETHER we worked out a long term plan. I'm very glad I did!

Nini

 

[aceandmee]

My cousin has been using prednisone for many, many years. She has a pretty severe case of Crohn's. I am not certain why she takes it, but one major side effect she has had is her bones break/fracture very easily and they take way, way longer than normal to heal. She gets special shots to help them heal, but they don't work well for her from what I understand.

Her doctor(s) never told her to take extra calcium while using prednisone(I asked once). This has really affected her quality of life. She is pretty much always on pain medicine and recovering from one break or another. She is only 37, with two active kids to try to keep up with, one that has autism. Both kids are awesome and she does a great job and luckily get lots of help from her mom and MIL, etc.

 

[toocherie]

My Mom has been on prednisone for over 30 years due to rheumatoid arthritis. In addition to some of the side effects mentioned above (thin skin, which have resulted in her arms permanently appearing bruised up and down the entire lower half) she is also very prone to skin cancer. She has had numerous cancers removed from her face--a combination of the steroid use and her sun-shine activities as a younger person (gardening, fishing). It has resulted in losing part of an ear and last year a 9-year surgery to remove and replace half of her face.

Prednisone is good for the things it helps, but it does have long-lasting effects. If you can get off of it, please try to do so.

 

[Floydian]

Wow. Best of luck to all of you folks! I was just diagnosed with severe Rheumatoid Arthritis and have been on this medication for the past 2 weeks. I was actually coming to this board to ask questions about my next phase of treatment when I saw this topic. I've already noticed a difference in my recent switch from 30mg down to 20mg a day, and am now even more hopeful that this other stuff will make the difference, what with all of the troubles folks seem to go through.

Best wishes to you all!!

 

[AnimalKingdomLover15]

I was on prednisone, not 10 plus years. But long enough (3 years of 60 MG a day) to really, really do damage to my bones and my teeth and body! Not to mention I had gained over 100 pounds without eating any food! ( which I have lost 113 as of today) I also shrunk 2 inches!! the stuff is just an awful double edged sword!!!
I to would wake up and have all these red blood marks underneath my skin! yuck! and I am in my 40's!! cute huh?

 

[anadyr21]

I realize everyone's case is different, but for longterm use (as in several years), has it ever been suggested that you try other drugs, such as methotrexate? It too has a whole list of serious side effects, but for some, it's a case of picking your poison.

 

[honugirl]

I'm honestly not expecting much of a response on this one, but I have to ask. Is there anybody else out there who's been on long-term prednisone therapy? I mean -- as in 10+ years. Pred is a nasty drug that's definitely NOT recommended to be taken for long periods unless absolutely necessary, and most of the people who fall into that category are extremely heavily disabled with conditions that are severe enough to pretty much blot out most of the otherwise more noticable effects of long-term prednisone.

I've had a lot of different emotional and physical issues over the years, mainly undiagnosed and untreated because I never realized they weren't normal -- either normal overall, or at least normal for someone with my medical history. And the more research I do into the effects of cortisol on the body, the more everything looks SO familiar, and I end up thinking "so THAT'S why..." or even recognizing problems\issues that I didn't understand weren't normal until I saw them on a list of cortisol-induced symptoms.

At this point I'd just really like to talk to somebody else who's dealt with these things, and I don't know whether to be sad or happy that it turns out I can't find anybody else who's been forced to take this horrible drug for more than a few months at a time.

Prednisone ruined my life. Literally.

Jenni

I'm going to guess that you have steroid-induced Cushing's syndrome? I have Cushing's Disease (same basic principle as the syndrome except the disease is caused by a known ACTH secreting tumor on the pituitary gland, all other causes ectopic sources and steriod-induced are known as the syndrome). If you haven't found it already, look at www.cushings-help.com They have really good info regarding all types of Cushing's. It's a tough thing to live with. It's literally ruined my life. There are so many symptoms that I wish I didn't have and I know they're all caused by the cortisol because they went away right after my most recent surgery, but are back with a vengeance. Feel free to PM me if you ever need to vent about it. I know what you're going through.

There are many people on that message board who also know exactly what you're going through who may have an idea of what you can do to minimize the effects of the prednisone. Good luck!

 

[PatMcDuck]

Wow, what a topic. I am typing this from my daughter's hospital room at Children's Hospital of Philadelphia..... she is in for her 3rd operation for treatment of her knees, the bones, from Avascular Necrosis, a side effect of steroids. The steroids were used to treat Juvenile Dermatomyositis, another Rheumatological disease (a rare one!) She took 120 mg/day for 8 weeks, only 8 weeks, when her bones began to have trouble. Surgeries for this, Oct 2007, both hips, Dec 2007, both knees, and now, both knees again.

She is now only 17 years old. She gained about 75 pounds, but has lost about 1/2 that. Her skin and tissue were also effected, and she needs plastic surgery to remove the excess skin. For HER, the cure was worse than the disease. Although JDM can be very painful, serious, and needs to be treated aggressively.

When using steroids, they need to monitor you for side effects. Steroids save lives, but they are so powerful, I hope they find new treatments in the future.

 

[brenalexacamp]

y dad has been taking it for almost 1 year with a trial chemo drug for prostate cancer-he took extra calcium too-he got so sick- he was weak, cold all the tie, teeth hurt, and his breath smelled aweful. He was in the hospital for infectious disease-diagnosed pneumonia-on heavy antibiotics now

he's in a rehab- shakey hands, nasty blood blisters-lots of fluid in his arms and legs-he's off the trial chemo so he can heal, so we just asked the dr to take hi off the prednisone. weaned off and today is the 3rd day without it.

sometimes the drugs we use to fight the disease have more side effects than the actual disease.

 

[carrollchristoph]

Remember that you are your best advocate! Although your doctors are probably well intentioned, you are the only person who can appreciate the risks and the benefits of any treatment.

And if you're not getting the answers you need, ask for a second opinion! If your doctor gives you a hard time about this, consider that a red flag.

 

[funnygarcia]

Prednisone was used as the first line defense against rejection for transplant recepients. We're talking MEGA doses for a lifetime You could spot long term recepients .. buffalo hump, moon face, weight gain, bone changes, skin changes, mood swings.. were expected side effects of a life changing transplant. Now transplant centers have better immunosuppressants, smaller doses of prednisone are used. A few centers are prednisone free

My DH had weight gain, mood changes, insomnia, petechiae (little bruises) in the first months after kidney transplant. Generally ill, miserable feeling.
Eventually weaned down to 2.5 mg a day, side effects of the prednisone stopped and he felt great. .. until the kidney rejected

He is reluctant to accept an offer for another living donor (I was his donor the first time, ZERO match). In many ways the side effects of the meds and the length of time to recover from surgery is worse than living with (short daily home hemo) dialysis. He would likely go to the University of MN, one of the few centers that limit prednisone use.

He has some lasting bone damage, osteonecrosis (avsscular necrosis) in his knees and possible hip. But that is par for the course with dialysis patients and hyperparathyroidism, not just prednisone use.

 

[kazzy3]

I'm honestly not expecting much of a response on this one, but I have to ask. Is there anybody else out there who's been on long-term prednisone therapy? I mean -- as in 10+ years. Pred is a nasty drug that's definitely NOT recommended to be taken for long periods unless absolutely necessary, and most of the people who fall into that category are extremely heavily disabled with conditions that are severe enough to pretty much blot out most of the otherwise more noticable effects of long-term prednisone.

I've had a lot of different emotional and physical issues over the years, mainly undiagnosed and untreated because I never realized they weren't normal -- either normal overall, or at least normal for someone with my medical history. And the more research I do into the effects of cortisol on the body, the more everything looks SO familiar, and I end up thinking "so THAT'S why..." or even recognizing problems\issues that I didn't understand weren't normal until I saw them on a list of cortisol-induced symptoms.

At this point I'd just really like to talk to somebody else who's dealt with these things, and I don't know whether to be sad or happy that it turns out I can't find anybody else who's been forced to take this horrible drug for more than a few months at a time.

Prednisone ruined my life. Literally.

Jenni

Over the last 19 yrs there has only been about 4 yrs where I was not on predinisone. I have been very high doses and maintenance dose and have also adjusted the dose up or down depending on symptoms. It is a horrible drug but a wonderful drug. When you are in a precarious health situation, sometimes there are no other choices. In the case of lupus there has not been a drug approved for the treatment of lupus in 50yrs! I and other lupus sufferers have to just try other drugs, antimalarials, RA drugs, chemo and of course prednisone. Over the years I have had various side effects. Some like you, I have overlooked until I maybe read an article and said to myself "oh that's why...". Many fighters like us just keep going and don't dwell on side effects. I can tell you the worst thing to me is the disfigurement. I think I can handle weight gain but the disfigurement is tough. I have no stretch marks from pregnancy but the stretch marks from high dose medrol are unbelievable, and there is nothing I can do about it. You have my sympathy and support. It doesn't make it better but please know you are not alone. I feel like the predisone poster girl and as well because of my history many friends and friends of my family will call for advice or to commiserate. Sometimes their symptoms are not ones that I have experienced but are awful. For instance, one of my professors' wives many years ago developed manic depression from steroids. He told me about it when I had to go to him to get excused because I needed to keep a medical appt. I was only 20 at the time! I am glad you sought support, as you can see by the amount of responses, you are not alone. Please enjoy your upcoming trip.

 

[Piper]

Over the last 19 yrs there has only been about 4 yrs where I was not on predinisone. I have been very high doses and maintenance dose and have also adjusted the dose up or down depending on symptoms. It is a horrible drug but a wonderful drug. When you are in a precarious health situation, sometimes there are no other choices. In the case of lupus there has not been a drug approved for the treatment of lupus in 50yrs! I and other lupus sufferers have to just try other drugs, antimalarials, RA drugs, chemo and of course prednisone. Over the years I have had various side effects. Some like you, I have overlooked until I maybe read an article and said to myself "oh that's why...". Many fighters like us just keep going and don't dwell on side effects. I can tell you the worst thing to me is the disfigurement. I think I can handle weight gain but the disfigurement is tough. I have no stretch marks from pregnancy but the stretch marks from high dose medrol are unbelievable, and there is nothing I can do about it. You have my sympathy and support. It doesn't make it better but please know you are not alone. I feel like the predisone poster girl and as well because of my history many friends and friends of my family will call for advice or to commiserate. Sometimes their symptoms are not ones that I have experienced but are awful. For instance, one of my professors' wives many years ago developed manic depression from steroids. He told me about it when I had to go to him to get excused because I needed to keep a medical appt. I was only 20 at the time! I am glad you sought support, as you can see by the amount of responses, you are not alone. Please enjoy your upcoming trip.

as a fellow "lupie", I completely understand. I have taken medrol for many years and had lots of side effects. Every time I try to get off, my body flares up and I would rather deal with the side effects from medrol than lupus!