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When Prednisone No Longer Works...

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Posted 6/10/2008 6:00 AM (GMT 0)
Hey guys!

I have had CD for a little over two years now and have only been able to achieve remission while on prednisone. The vicious little cycle has been, I flare, take steroids, go into remission immediately and relapse about 3-6 weeks after fully tapering off the steroids. This has happened for the past two years until recently (around Feb time frame). Basically I had an awful relapse and it took about three weeks for the 60mg of prednisone to kick in. I stayed onf 60mg for about a month and then began tapering by 5mg each week. about a month before I fully tapered off the 'roids I started relapsing.

I am currently in an awful flare (fully tapered off the 'roids two weeks ago). I REALLY don't want to go back on predisone (I am on Remicade at the moment) b/c I feel that it doesn't have the same affect as it used too and really don't want to go through the side affects. I already have osteopenia in my spine due to the prednisone and don't feel it's worth it anymore! My doc said if Remicade didn't start working (I've been on it about 8 months) then he would put me on Humira.

My question is, what should I do about the prednisone? My body has built up an immunity to it, so to me I don't want to take it BUT want to hear what others have been through! Please help and give me your advice on what I should do! yeah

Take Care,
Emma
Posted 6/10/2008 10:38 AM (GMT 0)
You could consider Low dose naltrexone, ldn? I am using it, and it works really well for me. I started to use it almost two weeks ago, and I feel really fine. The diarrhea and the pain is gone now. Ldn is a pill made from naltrexone/revia. The dose is at 4.5 mg. It's not a cure, you have to use it as long as you want to feel better. dose is ridiculous small, so are the side effects. Ldn is making the body producing more endorphines, and the endorphines does immediately increase to a normal level, so the pain that you may have felt before will often get reduced to zero within short time. You could always use non narcotic pain medicines to avoid pain untill ldn kicks in. takes from one day to some weeks. Don't use immune modulators or supressants with ldn.

 

Posted 6/10/2008 1:58 PM (GMT 0)
Emma, most GI's still consider 6-mp class drugs (Imuran, Azasan, etc) to be the standard of care for people whose CD is steroid dependant. Just riding a roller coaster of flares/remission from on/off prednisone is not, IMHO, a valid, responsible treatment plan for *any* doc to prescribe. I'd get another doc pronto. He/she should have already discussed *all* the treatment options, including a *bunch* before jumping to remicade or humira. Methotrexate can commonly be used for short term relief instead of prednisone. You would normally take it until the 6-mp class drug you take would have time to take effect. Normally around three months. Not to put to fine of a point on it, but your doctor's treatment plan so far sucks.
Posted 6/10/2008 6:49 PM (GMT 0)
Thanx for your response!

I was on 6-MP for awhile and unfortunately it affected my liver pretty severely. It took about a few months for my liver enzymes to return to normal. In the past I have been on asacol, 6-MP, Entocort, and am now on Remicade. I have also been on and off of the 'roids for two years. My doc said that if Humira doesn't work (Humira is the next step after the remicade) then he is going to put me on Methotrexate. I am definitely going to get a second opinion though, b/c this vicious cycle cannot continue to repeat itself!

Take Care,
Emma =-)~
Posted 6/10/2008 6:52 PM (GMT 0)
Time to talk to your GI. Pred is not something you want to be on for a long time anyway. May be time for Remicade or the like. Pred did nothing for me but give me grief. So far remicade has been the only help. Hope you get better soon..
Posted 6/10/2008 11:18 PM (GMT 0)
Thanx Sniper! I have been on Remicade for about 8 months now. Unfortunately it has not worked for me =( My doc said the next step would be Humira, and if that doesn't work Methotrexate.

If, for some reason, Humira doesn't work I think I'm going to go to the Mayo Clinic. I can't take much more of this!
Posted 6/11/2008 12:39 AM (GMT 0)
All I can say is, pred was about the only thing I could take that helped me unitl of course it was either almost or completely out of my system...

When it stopped working for me, the only choice I had was the alternative route which luckily for me has helped alot (no full remission but I'll take what I can get) going from 30+ times a day with mush, mucus and blood and severe lower back pain to 5 or less/day of formed stools, no mucus, no blood, no lower back pain.

Of course there are skeptics out there, but when nothing eles works or you're allergic then you don't have much choice in the matter other than to put skeptisism aside as I did which I'm so grateful that I did...and often it's a combination of things that tends to help more compared to taking just one thing and what works for some doesn't work for all (funny, just like RX) and it's very likely each has to find the combination of different things that work for them.

:)
Posted 6/11/2008 12:50 AM (GMT 0)
Methotrexate?
Posted 6/11/2008 2:22 AM (GMT 0)
I would suggest you try exclusive enteral nutrition, aka food in a can, if you have not already. If it is going to work for you, there should be improvement within two weeks.

I have done this myself, I know it also worked for EMom's son. Writer is the resident expert on EN in the forum.

I did 8 weeks exclusive EN and since then I usually do a mix of food and cans daily. It has kept things under control since February '08--I feel better and my bloodwork looks pretty good. It's allowing me to avoid Entocort for a while.

 

Posted 6/11/2008 12:01 PM (GMT 0)
Illini what are you using for enteral nutrition?
Posted 6/11/2008 2:39 PM (GMT 0)
liturbo,

I agree with teaspoon. I have been unsuccessful with many treatments over the years and I fear the extreme side effects of the treatment options offered to "us" (Crohn's patients) today. I did extensive research and am now taking Low Dose Naltrexone (LDN) for over 3 months now. It gave me relief from symptoms and pain on the first day. I take a 4.5 mg capsule every night before I go to sleep. I had minimal side effects the first 2 weeks (sleep interruption and vivid dreams) but they were not much different from my norm. I have been in direct contact with many people (with various illnesses) that have used LDN for years, with great success. LDN is used "off-label" to treat many autoimmune/inflammatory illnesses. Personally, I was in very bad shape before starting LDN. I feel that my inflammation is gone and the my pain is gone too. My body has responded very well to LDN and I am very pleased with it. I feel better now than I have in over 30 years.

Please feel free to email me privatly if you (or anyone else) would like to hear more about my experience with LDN. I will be happy to share some websites of interest with you.

Kindest regards,
Patti
Posted 6/11/2008 11:20 PM (GMT 0)
I have been using Nutren 1.5 and Nutren 2.0. They are polymeric, like Ensure, but have more fat/less sugar than Ensure.

My bloodwork is already very close to normal, and most of the time I feel OK... but I'm never satisfied... I just saw some good deals on Ebay for Peptamen 1.5, which is semi-elemental, so I ordered it and will see if I get more improvement.

Posted 6/11/2008 11:54 PM (GMT 0)
I've never seen Nutren in stores. Where do you get it from?
Posted 6/12/2008 1:37 AM (GMT 0)
I buy it either from Ebay or from a website called My Brands (just google it) and have it delivered.

When I visited family in Miami, they were able to buy it from a pharmacy at a large hospital. So it might be carried by a large pharmacy or a medical supply store.
Posted 6/12/2008 2:20 AM (GMT 0)
Cool, thanks!
Posted 6/12/2008 2:59 AM (GMT 0)

lilturbo said...
Hey guys!

I have had CD for a little over two years now and have only been able to achieve remission while on prednisone. The vicious little cycle has been, I flare, take steroids, go into remission immediately and relapse about 3-6 weeks after fully tapering off the steroids. This has happened for the past two years until recently (around Feb time frame). Basically I had an awful relapse and it took about three weeks for the 60mg of prednisone to kick in. I stayed onf 60mg for about a month and then began tapering by 5mg each week. about a month before I fully tapered off the 'roids I started relapsing.

I am currently in an awful flare (fully tapered off the 'roids two weeks ago). I REALLY don't want to go back on predisone (I am on Remicade at the moment) b/c I feel that it doesn't have the same affect as it used too and really don't want to go through the side affects. I already have osteopenia in my spine due to the prednisone and don't feel it's worth it anymore! My doc said if Remicade didn't start working (I've been on it about 8 months) then he would put me on Humira.

My question is, what should I do about the prednisone? My body has built up an immunity to it, so to me I don't want to take it BUT want to hear what others have been through! Please help and give me your advice on what I should do! yeah

Take Care,
Emma

You are going through the same I did, I even did the Entocort, pentasa, Methotrexate, Remicade, and now on Humira.  On my 11th week and doing well, most of my symptoms are gone.  I am also on 1 cipro a day, and switch to flagyl every other.  Since Humira can take up to 3 months I will stay on the cipro.  Seeing as Crohns is bacteria, cipro has controlled it alot.  I also take Acidophulus once in a while or yogurt to control yeast infections and the big D. Goo luck! 

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