Off the Pred for good?

[Shane]

Hi all,

I've managed to make it 15 days so far after stopping the Prednisolone without the severe symptoms creeping back in, longer than any time since I first started taking them (I've been on them almost constantly since diagnosis in March). This is due (to date) to 8 Methotrexate injections and 2 Infliximab infusions, with another infusion on the 2nd of Jan. Everything seems to be ticking along as if I was still on a decent dose of Pred. I am getting the difficulty sleeping still as well, but I haven't got the benefit of a decent appetite anymore. Oh well, if the metho and Infliximab/Remicade keep me like this (and off the Pred) I will gladly take it.

Has anyone else been in this situation before?

I will use this thread to update how things develop.

 

[TammySue62]

No-one that I know of really can ever get off pred.We have this (buddy i call pred because its like a good friend)for the rest of our lives. Unless by some miricle they come up with a cure!!!!

TAMMY

 

[Kev]

Yeah, shane, I don't want to rain on your parade, neither would I like to see a fellow sufferer set themselves up for an emotional AND physical setback, BUT

I've been on pred pretty consistently for nearly a year.. Actually, 48 out of 52 weeks... The 4 weeks were after coming off of it in a very slow taper 1st time. My little vacation from IBD lasted just 4 weeks. Then it all came back. Next time I went on pred, it took more and longer for it to work its magic on me, and when I started to taper off, when I got below 10 mg I was in for nasty pred withdrawal, severe flu like symptoms.. and with still 2 days to go @ 2.5 mg, all of my IBD symptoms came back like gangbusters.

now, that's just my case. Everyone is different, and some folks probably had a better outcome post pred. Don't start thinking negative thoughts just because of my experiences... After all, you are also on other powerful anti IBD drugs too. You'll probably not notice any downturn off the pred as the other drugs will/should be kicking in by then to keep symptoms in check

Just didn't want to chance you being blindsided by a relapse (tho its rare) just because no one wanted to be rude/crude enuff to burst your bubble. I have no problem opening my big mouth and making room for both of my size 14 feet. As for pred overall, think most of us who've used it have a love N hate relationship with it. Love how well it makes us feel when it kicks in, hate some of the immediate side effects that come with it occasionally, hate the fact that nastier long term side effects means we can't stay on it, and hate the potential for nasty withdrawal symptoms that occasionaly go hand and hand with it as we are forced inevitably to wean/taper off of it.

 

[Shane]

Yeah, I understand what you're both saying, but I'm determined to break the cycle of tapering and subsequent re-introduction of the drug that has been the norm for the last 9 months. Positive thought and all that....

 

[rhapsody86]

would be awesome if you could stay off that pred! :smile: Good luck!

 

[jobengals]

i think positive thought has a big play in all this. Good for you man, leave that icky shit behind

i'm on like 2.5mg every other day now. also trying to stay gluten and dairy free, see if that helps things

 

[Kev]

Even if (and that's a big 'IF'!) positive thought has no impact on the long term outcome. keeping positive, thinking positive, feeling positve DOES positively affect your day to day dealing/living with your condition. No one can deny that! You, and you alone, decide whether to be positive or not.

 

[joetz]

I've managed to be off prednisone since 2003. I don't plan on ever needed to take it again. I use slippery elm to manage the disease and for me it is more more effective in treating crohns with none of the side effects.

 

[D Bergy]

Slippery Elm. How long have you used this treatment? Has it worked better than prednisone for you?

I am always looking for another tool for my ever growing Crohn's tool box.

Never know what the future holds.

Dan Bergman

 

[Kev]

Hey Dan, ever thought of listing the contents of your 'Crohn's tool box' in a dedicated thread? You never know, it could prove invaluable to others on here

 

[Shane]

Hi all, still doing ok after 3 weeks off pred. Getting itchy skin which I think is a side effect of infliximab and I think I'm coming down with a cold (poor old immune system) but, other than that all is going well.

 

[D Bergy]

Yeah, I have thought about doing the "tool box" thing. People usually PM me if they are interested. Maybe I will sometime, but I always get to explaining the "why" I use this or that, and it gets to be a one heck of a job.

I have reasons for using everything, but the research is scattered all over. I do not use anything with out some cumulative evidence of one kind or another. I feel I should provide that also, but it is hard to put together.

Lots of good treatments from many people here. I think a dedicated thread for treatments standard or unconventional would be good. I think everyone could put there methods in one thread for anyone to quickly go through. If someone wants to start it, go for it. I would be here all day if I try it.

Dan Bergman

 

[rhapsody86]

Yeah, I have thought about doing the "tool box" thing. People usually PM me if they are interested. Maybe I will sometime, but I always get to explaining the "why" I use this or that, and it gets to be a one heck of a job.

if you made a thread, you'd only have to explain everything once. Just a thought.

 

[Kev]

Hey, dan, sorry if I opened a can of worms. but, I agree with rhapsody about only having to do it once if it became a thread.. and, as far as explaining goes... with some folks you do have to draw them a picture, but within limits.
Like, if I advised someone new to crohns/ibd to stockup on toilet paper, AND they asked me 'WHY?'... I'd tell them to ignore my advice, it doesn't apply to them. Let them figure it out for themselves... the hard way. Just the way I roll. Or should that be unroll? (toilet paper). Just a thought

 

[Shane]

Just when things were looking up... Got a letter from my GI today saying my last blood test shows that there is inflammation in my liver. He's told me to discontinue the Methotrexate, have another blood test and take it from there. I think I can see square one sprinting over the hill towards me. Help!

 

[Kev]

Shane.. Sorry to hear about the metho. I'm not surprised tho. If you look at the stats... Say 30 folks start on metho... 20 of them will do OK in 1st year. Of those 20, less than 14 will still be ok by year 2... so literally less than 1/2 of the group can expect good results over a 24 month time frame (or less). Its a sobering reality, and that's not taking into account the adverse reactions.

If metho is taken off the list of options, then it might be an opportunity in disguise. Your GI will probably have a ready made list of traditional meds for you to consider. You may possibly want to look at other 'alternatives' your GI doesn't toss your way. I went the LDN route simply because I ran into problems with imuran/azathioprine, and my next likeliest option was to be metho. I didn't like the odds, and if it failed, (as it statistically would, it merely was a matter of when) then my remaining options were either few or impractical (I dunno how anyone w/o coverage can afford remicade meds). I opted to take the LDN gamble, it isn't for everyone, and finding a GI who will try it is perhaps the biggest hurdle. I've been on it less than 3 weeks. I have had ups and downs, but overall i'm impressed with the drug, and there has been slow, occasionally erratic, progress that I diary everyday on here. just some food for thought in case you were freaking out re the metho and your liver. Just wanted you to know that a: your doc has probably loads of options for you to try b: on top of those, LDN may be worth considering to

Take care... keep posting... let us know how it works out, and what you do

 

[Shane]

Thanks Kev,

I've still got the Infliximab (get it on NHS over here) to fall back on but, it seems the chance of resistance/reaction is higher without the metho. It's not the end of the world, just an annoyance really. So long as my liver recovers ok. Sure it will though. Would try ldn given the chance.

 

[D Bergy]

Anyone can try LDN if they decide it is in their best interest to do so. There are any number of ways to get it if you decide it is right for you.

Your doctor may not want to prescribe it, because they have their own set of reasons that do not always relate to your reasons for wanting to use it.

It really depends on if you want to take an active role in your treatment or follow what ever is recommended by whoever you are seeing at the time.

I prefer to be an active participant since I have to live with the results, good or bad either way.

I hope you can get some permanent relief from this disease, which ever path you take.

Dan Bergman

 

[Kev]

Hey Shane.. i'm not sure of the implications/ramifications of infliximab and LDN. I do know that immuno therapy and LDN don't mix.. so, if you are on infliximab and it's covered by NHS (National Health Service???) by all means continue on it. If it is compatible with LDN, then it (LDN) might be worth considering. The one thing I would absolutely recommend NOT doing is ...say, come off of a med like Remicade (if Remicade was working) to try an experimental drug like LDN, because to all extents and purposes, coming off of remicade is pretty much a 'one way' trip. going back isn't realistic. That is the most important thing... people have to keep their options open, AND not burn any bridges behind them. Just want to be absolutely clear on that

 

[Shane]

Yeah, National Health Service. Instead of paying insurance, we just pay for it all through taxation. I know about the one way trip in coming off Infliximab but, if it stops working or causes me problems as I'm off the metho (as I suspect is possible), then I will certainly consider LDN as then my options would be dwindling fast.

Part of me is wondering if it is really worth doing this to my body with all the meds. One gave me Pancreatits (Imuran), one looks as though it has given me hepatitis (metho) and that is before I think about any long term ramifications of taking Pred and Infliximab, etc, etc....

My alternative is a lifetime with the bag. My Grandmother has had a Ileostomy bag for 40 years due to Crohn's and she is still going strong at 94 years old. The disease never returned anywhere else for her. Dunno if I'd be that lucky though.

But, another part of me is thinking that if I go down that road I'm just throwing in the towel and letting this bas*ard disease win.

Will await the results of yesterdays blood test, see how my liver is doing now and then have a full and frank discussion with my GI.

 

[Kev]

One of the aspects of the LDN route that really intrigued me, as I'm adverse to taking medications to begin with - due primarily to all those nasty effects they insist on warning one about - is that the typical dosage for this is so low. To place it into perspective, the typical dosage for an addict taking this drug for a two week period is enuff to keep an IBD patient going for 466 days. That's right, what an opiate or alcohol addict would take in 14 days would last me (or you) over 15 months. At that rate, the risk of side effect is so low, the long term effects so minimal, that they can almost be totally dismissed. Vivid dreams, sleep disruptions, hey, those I "CAN" live with. The other meds for IBD, some of those are "REAL" killers!! Just a thought.

 

[Shane]

When the risks of known side effects and long term damage are compared between LDN and other 'traditional' IBD meds it does seem a bit obvious to me that I should seriously consider this path.

 

[Shane]

Just got my blood results. Liver is getting worse.

No more Methotrexate for me.

 

[Shane]

Great news,

I've just spoken to my GI, it appears that my GP had read the results incorrectly and my Liver has shown a significant improvement, and has NOT got worse.

He did say to stay off the metho though, which is fine by me, and to continue with the Infliximab.

 

[joetz]

Slippery Elm. How long have you used this treatment? Has it worked better than prednisone for you?

I am always looking for another tool for my ever growing Crohn's tool box.

Never know what the future holds.

Dan Bergman

It works better than prednisone because prednisone is a destructive drug that does all kinds of horrible things to your body. I've been using it since 2003 and have never needed to go back to steroids. The steroids gave me bad mood swings and they made me gain a lot of weight.

 

[Kev]

I'm left wondering how Slippery Elm works. Whether it acts as a balm, or if it somehow suppresses or retards the spread of this disease. If the former, then it falls within the realm of an anti-inflamatory..., whereas if the latter, then its more akin to immuno suppressant therapy. not so much that either method is a 'cure' per se, more akin to them not allowing the disease to grow or spread.

mind you, that's my oversimplified, totally uneducated SWAG on the issue.