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For those on Long Term Prednisone (4+months)

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Posted 6/30/2009 5:43 PM (GMT 0)
There was some discussion in the past couple of days in regard to staying on prednisone if it works. The following link describes the potential horrors of staying on prednisone long term (more than 4 months). I know many of you feel prednisone is a blessing but please take the time to read through these stories of UC patients and the damage prednisone has caused. Yes, it can be a lifesaver but should only be used in the short term. Anyone who is steroid dependent should talk with their GI about other options.

http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/1661015192

** Sue; I just made the link active

Sue

Post Edited By Moderator (Lonielane) : 7/1/2009 3:29:01 PM (GMT-6)

Posted 6/30/2009 5:50 PM (GMT 0)
Thanks for posting that. I don't care if I get worse when tapering this time, I have already decided I am NOT staying on Prednisone. Surgery sounds better to me than staying on dangerous medications forever.
Posted 6/30/2009 5:51 PM (GMT 0)
No long steroids cause more problems than they solve.
Posted 6/30/2009 6:00 PM (GMT 0)
Hmm I've been on steroids for 6 months now...and still on them while we are waiting to see if the Azathioprine is going to work or not. I'm steroid dependant so coming off them is not an option without any other medication taking its place.
Posted 6/30/2009 6:40 PM (GMT 0)
Was on them for about 8 months last time. My knee has some pains in it now which started to go away after a couple of months, then I started taking pred again 4-5 days ago and the pain came back almost right away. The stuff really eats away at you. I'm going to stop taking it in another day or two, calling for surgery today.
Posted 6/30/2009 7:42 PM (GMT 0)
Or just ask me about the horrors. Months of unbearable pain, two shoulder surgeries with painful rehab and a shoulder that has permanently decreased range of motion and still frequent pain.

And don't trust the "Entocort isn't systemically absorbed" line. That's what I was on.
Posted 7/1/2009 4:37 AM (GMT 0)
Next month will mark 1 yr for me on prednisone. Not happy to be on it...but it seems to be the only thing that works. Going to the GI to discuss my other options....
Posted 7/1/2009 5:18 AM (GMT 0)
Take my example being on and off mostly on pred for about 5 years and for a long time at below 10mg doses. Due to the damage from this I have had multiple surgeries over the past 3 years
2 abdominal hernia , gall bladder, both eyes (cataracts) shoulder and several other issues with carpel tunnel , trigger finger that probably will need surgery and I am scheduled to have surgery and a screw inserted to repair a broken foot neaxt month.
Prednisone is really good if used only in a short burst but it has very evil effects when used long term and I suffered quite a bit getting off it but with the help of Humeria for the last 5 years I have been able to avoid it. The last bad flair the nurse said when I talk to the Dr he is going to say either go on the pred or come get admitted I said sign me up I want to be admitted rather than take pred the Dr called me about 5 minutes later and we worked out another plan.
Posted 7/1/2009 12:59 PM (GMT 0)
I was on steroids for 6 months and decided that this wasn't for me. All of the physical and mental side effects were not worth it. I now have bad ankles and bad wrists - by bad, I mean that I have pain in the mornings and pain when sitting still for even short periods of time. At 29 years old, this to me is abosolutely caused by the steroids as I had no problems before. I just did my first dose of Remicade and the very next day, I felt incredible. Finally had normal poop! I'm going back next week for my 2nd treatment. I would highly recommend for those who haven't tried Remicade, to discuss it with their doctors. I had to get a second opinion for this to be an option as my first doctor only seemed to treat with steroids. I'm a definite believer in the Remicade as it put me immediately in a form of remmission where I had more energy and could leave the house. I was stuck at home because of using the bathroom more than 30 times a day. Good luck!
Posted 7/1/2009 6:55 PM (GMT 0)
I have been on pred for 6 years straight now, I am totally steroid dependent.

I know its terrible to be on it for so long, and my GI has been telling me for years I must get off of it, but I am not ready for surgery just yet.

Luckily I have managed to stay on pretty low doses for thelast few years - i am on 3mg.

Apart from the moon face, osteoporosis is the main side-effect I have suffered.

Posted 7/1/2009 7:16 PM (GMT 0)
That's just weird to me that you are ok on 3mg. I mean, the body normally produces the equivalent of roughyl 7mg a day (I think that's right anway) so it seems odd that 3mg helps.

Have you looked into trying Humira?

Honestly, I'd do surgery before I'd risk my health like that.
Posted 7/2/2009 10:19 AM (GMT 0)
Fruitgirl - No, I havent tried Humira as I am on Abatacept infusions and you cant take both.  Abatacept has allowed me to reduce my pred to 3mg - without it I could not get below 15mg.

3mg does sound like a ridiculous dose, but it makes a HUGE difference.  If I try and go below this amount, I will go into a serious flare. 

I had my natural cortisone blood level checked at the hospital a while back and it showed my adrenal glands, after so many years on pred, are no longer working as they should.  I think they prouduced only around 2mg of natural steroid - so the extra 3mg I take in tablet form, kind of help to bring me up to a "normal" cortisone level.  Not an ideal situation, but at least it is a low dose.

Posted 7/2/2009 2:58 PM (GMT 0)

I am in my 6th month of prednisone - tapering from 40 mg. and now on 5 mg.  If the rectal meds do not put me in remission I will happily go back up on prednisone to whatever it takes.  I am 69, no new problems.  I have arthritis, bad knees, etc. all before prednisone and they all feel much better while on at least 20 mg.  I know I would feel differently if younger but right now I would stay on prednisoe rather than ever have surgery.

ElaineNY

Posted 7/2/2009 3:06 PM (GMT 0)
Ah, I'm not familiar with Abatacept, so that makes sense why you aren't on Humira!
Posted 7/2/2009 4:51 PM (GMT 0)
I'd like to chime in here...as the mom of a 22 yo who has Osteonecrosis after only 4 months of Prednisone use....please don't think this can't happen to you.  If you've been told you have bursitis, or you "suspect" arthritis because your hips/knees/shoulders hurt, it would be in your best interest to have those joints evaluated with an MRI.  Had we not investigated my daughter's knee pain, she'd still be walking around with achey joints that would be getting worse without our knowing that her bones were really dying.  Because we found it early (as devastating as it was to find out), and get her joint sparing core decompression surgery which hopefully will halt the progression of this disease.  You will recognize my story in the link that Sue has posted from the jpouch.org website.  Here are a few academic sources that I like to post in case anyone wants to investigate further:

"Because measures to preserve the joint are associated with better prognoses when
the diagnosis of AVN is made early in the course of the disease and because the
results of joint replacement therapy are poorer in younger age groups than in
older patients, it is critical to diagnose AVN as early as possible to prevent
or delay progression of the disease"
http://emedicine.medscape.com/article/386808-overview

"The diagnosis and treatment of nontraumatic osteonecrosis of the femoral head.
Etienne G, Mont MA, Ragland PS.
Sinai Hospital of Baltimore, Rubin Institute for Advanced Orthopaedics, Center
for Joint Preservation and Reconstruction, Baltimore, Maryland, USA.

"Osteonecrosis of the femoral head is a potentially debilitating disease that
frequently affects young patients in the third through fifth decades of life. If
untreated, this disease will result in total destruction of the hip joint;
therefore, early diagnosis and intervention are essential to optimize outcome.
Although the etiology of osteonecrosis of the femoral head is poorly understood,
awareness of well-established risk factors and associated disorders can assist
in early detection and possible prevention of hip joint destruction. All
patients with symptomatic hip disease should undergo standard radiographic
evaluation; however, MRI remains the most sensitive diagnostic modality.
Depending on the stage of the disease, options for treatment range from
minimally invasive procedures such as core decompression to total joint
arthroplasty."
http://www.ncbi.nlm.nih.gov/pubmed/15116601?ordinalpos=3&itool=EntrezSystem2.PEn\
trez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Posted 7/2/2009 5:05 PM (GMT 0)
    OMG...how devastating!  I am so sorry to learn your daughter has to go through this.  Do you think this was something she may have had prior to the prednisone use and the prednisone just pushed it over the edge or what?  I had never heard of this, but I do know several people who have suffered with bone problems stemming from early childhood who never took prednisone.
Posted 7/2/2009 5:12 PM (GMT 0)

Both gastro doctors I have seen told me that extended prednisone use could cause this - probably my only real concern - and certainly would be if I were younger.  I had all my arthritis, etc. BEFORE prednisone - nothing new yet!

ElaineNY

Posted 7/2/2009 5:25 PM (GMT 0)
Hi Christine - she was COMPLETELY healthy before taking prednisone...I could post another report by Klingenstein that states clearly that "IBD predisposes patients to corticosteroid induced osteonecrosis. An exact threshold dose has not been determined. The data suggests that either long term therapy or short term high dose treatment increases the risk of osteonecrosis. Even if symptoms are limited to one joint, multiple joints are often involved and comprehensive testing with MRI is indicated in all cases." http://www.ncbi.nlm.nih.gov/pubmed/15691298

The thing about osteonecrosis (aka avascular necrosis) is that it is silent...it can lay "dormant" until the bone starts to break and fracture and then you may be told that you have osteoarthritis because arthritis is the endpoint of this disease. I'm not trying to scare anyone...just raise awareness...but, it may present with a clicking sound, or some arthritis like stiffness and can come and go..and to confuse the situation, many of the medications that IBD patients take cause joint pain, so it's so important to investigate with MRI. Her pain comes and goes with use or with bad weather so many people think it's just arthritis. I've chatted with several people who email me privately and I'm thrilled when they investigate and it turns out that it isn't ON, but if it is, it's really important to find an ortho who specializes in treating this disease.
Posted 7/2/2009 7:09 PM (GMT 0)
I attached this thread because I think there are too many people who know they shoudn't be on long term prednsione but choose to because they don't like the alternatives (immunosuppressants, biologics, or surgery). But I think those people who choose to stay prednisone should read the stories of those former UC patients who have had devastating results and in hindsight wished they had chosen a different treatment plan. Be informed. Know the risks and if you are willing to live with the risks then by all means continue your treatment.

Sue
Posted 7/2/2009 7:29 PM (GMT 0)
I wish I had known more about the risks before taking it. It's my fault for not researching it, but all my GI said the first 2 months he avoided putting me on prednisone was "I dont want to prescribe it because you might get some acne". Haha...yeah, that's what is most important. He never mentioned any other possible side effects.
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