Long-term Prednisone?

disfan07

DIS Veteran
Joined
Mar 25, 2006
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.
Methotrexate is what i take now. But i take it for severe eczema. I have severe asthma as well as my severe eczema so for the past 4 years (since i was 16) i would be on prednisone for either my eczema flare or an asthma flare. I think one yr i went maybe 4 weeks without prednisone.
For me, i went through major prednisone withdrawl a few times....that is miserable within itself. Butu the worst side effect for me was the weight gain. When i started takign prednisone when i was 16 i weighed 130lbs....after 3 yrs, i maxed out at 195lbs and im only 5'3"...it was terrible.

I ended up at Johns Hopkins for my eczema and i was started on cyclosporine for about 5 months but than my kidney function began to decline so my derm. switched me to methotrexate.

I now take methotrexate once a week and it has worked wonders. I have to have labs done every 5 weeks to check my liver function and blood levels but so far after about 4 1/2 months all is good. The one side effect that i have experienced is stomach problems but it usually only happens the day after i take it (i take 6 pills on tuesdays and i usually feel pretty crappy on wednesdays) and i cannot drink any alcohol, and when i decide i want to have kids, i have to stop the meds. Under no circumstances can you get pregnant while taking methotrexate. If that happens, you have to terminate so if there is a possibility of gettign pregnant methotrexate is not recommended. The most concerning side effect for me is that methorexate can cause lung fibrosis adn with my asthma being so severe already that is a concern but i'll take the methorexate over prednisone any day
 

Leajess99

DIS Veteran
Joined
Jan 9, 2009
This is so scary to read especially after my 6 year old had to be on Prednisone 3 times in less than 6 months due to her asthma flaring up. We did find the cause of the flare ups was actually the school she attended. The school has a mold problem and the school board does not want to fix the problem. Now I am in a fight to have her moved to a new school and that has been a nightmre. School started 1 1/2 weeks ago and my dd was recovering from surgery so not going for that but her surgery recovery time is up on Wed. and still no school for her to go to. We have a school that is 2 miles down the road that denied her enrollment but another one 6 miles away saying they may take her but I have to drove here which won't work as her sister has to be on the bus when i would be taking the little one and I will not leave my 11 year old outside with the highschool kids alone. My 11 year old goes 12 miles one way to school in a different direction so no way to drop the 11 year old and 6 old in time. I hate having to fight for my child to get the education she is to be afforded that will not cause her more harm than good.

Anyway, sorry for all on Prednisone with the bad side effects. I know it is a hard drug to come off as my son's former babysitter was on it for I think lupus and congenital heart failure or something like that (sorry was in 1994).
 

connie1042

DIS Veteran
Joined
May 18, 2006
My daughter also was on prednisone for a long time for Dermatomyositis. She was diagnosed when she was 4. They did not start prednisone treatment until we switched doctors form Mayo Clinic to University of Minnesota. I can truly say without this treatment for this, she would not be alive today. She is now off the drug, is 30 years old and married with 2 little ones and is a teacher. She had the weight gain, but no other side effects so far. She has run in 2 triathlons. Growing up, she had many, many surgeries to remove the excess calcium deposits. At one point she was pretty much wheel-chair bound. Used a scooter in school. At age 11, she weighed 35 lbs. I have to say, it was not a happy time when she was on the drug, and she was weened off it very slowly, but has not been on it for 15 years. On an off note. WDW was her Wish Trip when she was 10. She was the State of Minnesota Goodwill Ambassador for the Muscular Dystrophy Association. She now does fundraisers for them. They were a great help with getting her braces and medical equipment.
 
  • Anne MN

    DIS Veteran
    Joined
    Mar 24, 2004
    This is so scary to read especially after my 6 year old had to be on Prednisone 3 times in less than 6 months due to her asthma flaring up. We did find the cause of the flare ups was actually the school she attended. The school has a mold problem and the school board does not want to fix the problem. Now I am in a fight to have her moved to a new school and that has been a nightmre. School started 1 1/2 weeks ago and my dd was recovering from surgery so not going for that but her surgery recovery time is up on Wed. and still no school for her to go to. We have a school that is 2 miles down the road that denied her enrollment but another one 6 miles away saying they may take her but I have to drove here which won't work as her sister has to be on the bus when i would be taking the little one and I will not leave my 11 year old outside with the highschool kids alone. My 11 year old goes 12 miles one way to school in a different direction so no way to drop the 11 year old and 6 old in time. I hate having to fight for my child to get the education she is to be afforded that will not cause her more harm than good.

    Anyway, sorry for all on Prednisone with the bad side effects. I know it is a hard drug to come off as my son's former babysitter was on it for I think lupus and congenital heart failure or something like that (sorry was in 1994).
    Does you younger DD have an IEP for her asthma? I believe that with an IEP she has a stronger reason to be in a different school- mold free! take a look at your district guidelines- or take a look at FAPE- or as Sue MN gave me for another issue for a friend- look up PACER center they have a section under web something and the last one deals with FAPE fair and equal public education- I always called it fair access to education- i knew what it was just never used the correct acronym. anyway- you might find some help with your school district there.
    I am helping a friends mom with a service dog issue with our school district- it is a big mess of ......
     

    Jymn

    Earning My Ears
    Joined
    Jan 2, 2019
    I started taking large amounts of Prednisone when I was 9 in 1959 due to severe asthma. At age 17, it was discovered that I had not grown nor developed secondary sexual characteristics. It was determined the high doses of Prednisone had stunted my growth (and caused angry, almost psychotic behavior). For the next 40 years I tried tapering off the drug due to warnings from Doctors. My asthma was nipped in the bud at age 45 due to Advair. But I could never get below 1.5 mg of Prednisone, a maintenance dose. Any lower I would get shivers, flu symptoms, painful joints, and the usual symptoms of withdrawal. They were so severe, I couldn't work or concentrate. I had to go back up over 2 mg a day or every second day. In 1995, I was sent to the top Endo at UCLA. He said yes your adrenals are damaged but you have depression and that's why you have withdrawal symptoms. So I started on antidepressants for the next 15 years, eventually losing all my interest in everything and becoming actually depressed when I wasn't in the first case! I became destitute. I stopped taking Prednisone 49 years after I first started taking it. I've been free of Prednisone 15 years and antidepressants 4 years. I only grew to be 5'5", my back is painful where I believe my spine has become brittle and fused, I have lost any feeling of 'well being' that Prednisone gave me; even if it was a false sense of well being at least I felt something positive. It has in effect ruined much of my life.
     
    Last edited:

    lenny lee

    Earning My Ears
    Joined
    Sep 6, 2019
    Is your story for real? did you really take prednisone everday for 49 years or was it on off?

    I started taking large amounts of Prednisone when I was 9 in 1959 due to severe asthma. At age 17, it was discovered that I had not grown nor developed secondary sexual characteristics. It was determined the high doses of Prednisone had stunted my growth (and caused angry, almost psychotic behavior). For the next 40 years I tried tapering off the drug due to warnings from Doctors. My asthma was nipped in the bud at age 45 due to Advair. But I could never get below 1.5 mg of Prednisone, a maintenance dose. Any lower I would get shivers, flu symptoms, painful joints, and the usual symptoms of withdrawal. They were so severe, I couldn't work or concentrate. I had to go back up over 2 mg a day or every second day. In 1995, I was sent to the top Endo at UCLA. He said yes your adrenals are damaged but you have depression and that's why you have withdrawal symptoms. So I started on antidepressants for the next 15 years, eventually losing all my interest in everything and becoming actually depressed when I wasn't in the first case! I became destitute. I stopped taking Prednisone 49 years after I first started taking it. I've been free of Prednisone 15 years and antidepressants 4 years. I only grew to be 5'5", my back is painful where I believe my spine has become brittle and fused, I have lost any feeling of 'well being' that Prednisone gave me; even if it was a false sense of well being at least I felt something positive. It has in effect ruined much of my life.
     

    toocherie

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    Jan 7, 2008
    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.
    Just ran across this thread again. My Mom passed in 2015 and took Prednisone every day until her last hospitalization.
     
  • riceman

    Earning My Ears
    Joined
    Jan 11, 2020
    I have been on prednisone for 10 years now. Not for the usual things. I have had chronic fatigue syndrome for 22 years now. 10 years ago I had a sinus infection out of control and antibiotics didn't work so the ENT put me on prednisone to stop it. It worked after a bit. I tried to get off it but kept having weak spells my doctor at the time gave me no details. And that was before the internet. Later I realize that part of my CFID was adrenal related so using prednisone was one of the worst things I could do but it took me many years to realize that. In 2010 I had sinus surgery and the ENT had to boost it up to 60 after that there was no way for me to get off. IN 2012 I made a serious attempt and had many symptoms of adrenal I tried for 3 months and had to stop or no longer be able to work. Ove the years 2012 to 2017 I was on does of various levels. When I was sick or had a sinus infection I went up but then went down most of the time in t he 20s and 30s. IN 17 it went up into the 40s. During those years I had to work many hours and take care of my dying parents. I needed the energy and its ability to reduce my CFID symptoms. I had some side effects moon face and a few other Cushing syndrome but that was about it. I did have more issues with blood sugar. In 2018 My dosage went up into the 50s with more sinus issues etc. But I was in my decent shape. During those years I did things I could not imagine I could do in 2008 like travel to Europe 3 times etc. But in 2019 it collapsed. It started with the NORA virus after that I not been the same. During that time I had many sinus infections other colds etc also started to get lactic acidosis which has been happening almost on a monthly basis sending me to the ER. Some of it was caused by medications I used other by dehydration etc. I have lost a lot of strength during that time I rose up pred too high into the 80s. It stopped helping and started to make things worse. It taken most of a year to figure things out. IN this time I have found I have osteoporosis Cushing syndrome high blood pressure and blood sugar and have been losing strength all year. I said earlier I used to travel I now have issues just moving around a grocery store and being wiped out. Somethings I am treating somethings I am not. But I am tapering prednisone I am in the 60s now and have a long ways to go. I will never get off of it completely but I just want to get it down so its not damaging me so much and I can recover. My doctor said little to me about side effects over the years but he did not know I was using overt 60mgs either so this is at least somewhat my fault. But no one has told me of the terrible problems I now faced. I wish they did earlier. Now of course they are. With tapering I hope to recover. I know that osteoporosis will never go away but I am not too bad with that one yet. One of the things I learned is it has effected my nerves so I am sensitive to medications and I seem to have some defiencies in copper and things. I am always low on protein. Right now I am doing the best I can I hope by spring to be low enough that I can start to feel better. I am debating how fast I can taper but it seems to be connected with my CFID now so I am experience side effects at a higher dose.
     

    pmcpmc

    DIS Veteran
    DVC Premium
    DIS Lifetime Sponsor
    Joined
    Aug 15, 2003
    For me Prednison was prescribed for Myasthenia Gravis ,a muscle nerve dis order brought on I believe by extreme stress .
    Was brought into hospital following what felt like a heart attack but was actually by diaphragm ,a muscle was stopping working making my chest tight .
    The dose was increased to 60gm per day over two weeks .
    When I got out of hospital my wife was driven to distraction because of my odd behaviour .My wife likes her quiet time at 6:00am no noise and no discussions .Me I wanted to talk about everything under the sun which is not normally me .
    I would be up in the middle of the night watching the shopping channel and buying al the useless stuff of the day .
    The stuff drove me completely bats and by Christmas my wife said sit down and we will draw up a list of pros and cons of Prednisone.
    You guessed it the cons won hands down with the number side effects.
    In Uk could not get the specialist to see me until his follow up due six months later.
    We decided to come of the Prednisone and realising the extreme danger of combining off it quickly from a high dose ,was off it by Easter and the Myasthenia Gravis had gone into remission and has remained so.without the need for tablets either .Medication because it is a steroid. Works for some but more often is only a short term fix and then stops working but broken bones etc continue .Hope my experience helps
     

    Haimia

    Mouseketeer
    Joined
    Jan 28, 2010
    Constant use (usually low dose of 2 to 4 mg maintenance) led to my eyes having cataract surgery in my early 50's. Eye doctor said it was due to the steriods. Nasty stuff that makes you feel great!
     





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