Yet another pred taper question...

[kateel]

I just started today on 10mg of pred (I've been tapering down from 40 mg over the last two weeks...) I'm scheduled to take 10mg for 6 more days, then I'm supposed to stop completely. Has anyone gone from 10mg one week to nothing the next and if so, did you have any side effects from it? I'm concerned how my body will react to it.

 

[Jennifer]

I don't think I ever went from 10mg to nothing after being on it for a while. I usually went down to 5mg and then nothing. If you're concerned you could ask your GI to go to 5mg instead and if needed it also comes in 1mg tablets.

 

[Grumbletum]

My doc told me to come off at 10mg, but had to go up again before the last week of 10 was over. I was actually desperate to come off, but now I'm scared to! I think, psychologically, I'm becoming a wee bit addicted to it :-(

 

[kateel]

Can I ask why you had to go up again? I'm assuming this is b/c symptoms starting coming back? May I ask which symptoms? I just want to know what to look out for. My doc has told me that unless my diarrhea comes back, I am to stick with the original plan (come off at 10mg.)

 

[Lisa]

Kateel - how long have you been on pred? If not for too long, it whouldn't be an issue, but if you have been on it for more than a month or two I'd want to taper more slowly - go to at least 5mg for a week before stopping.....

 

[kateel]

This is the start of my 4th week...does it sound like I should be ok then?? Thank you for your reply!

 

[Grumbletum]

Sure, Kateel. A CT scan to look for fistula ( there is one ) showed I still had a lot of active Crohn's having been on 20mg and tapering for about five or so weeks. A bit of a surprise, but Pred can mask symptoms.
How are they monitoring your progress?

 

[archie]

I went from 10 to 7.5 to 5 to 2.5 then none, I think (but I could be wrong) that 5 mg is equivalent to the amount your body makes naturally to survive, but whilst your on pred it doesn't make any therefore you have to taper slowly to kick your own body into action or you'll only experience a flare of symptoms. You can suffer a slight flare when tapering anyway until the body readjusts. I was on 2.5 for ages before I stopped, I had been on pred for 6 months though so that might be the reason.

 

[kateel]

How are they monitoring your progress?

The doc I'm currently seeing ISN'T monitoring my progress...

They handed me a stack of prescriptions and told me "we'd like to see you in 6 months for a follow up and then we'll see you again in 2 years for another colonoscopy". It has been VERY frustrating to say the least. I've been referred to another specialist, but they aren't able to get me in until September. In the meantime, I'm out here on my own, trying to figure it all out...

I have contacted my General Practitioner for a few questions along the way. I'm just praying this all goes smoothly and I don't need to see anyone in the meantime...

 

[Grumbletum]

Oh no, that's not very reassuring at all :-( I'm glad you found you're way here. I honestly don't think I'd be coping without my forum Crohnies. My GP has also been great. She put me on the Pred because I had to wait over a month for my first gastro appointment. I'm hoping that your treatment plan is cos your Crohn's is mild, but still, I would want some way of knowing that things are on the mend.
Let us know what your GP says.

 

[ChefShazzy]

Yeah, I definitely would not go from 10mg to nothing. Myself, I found even dropping from 10 to 5 was too much - tired, sore, symptoms returning... I tapered by 2.5 mg per week, like archie up there. Good luck!

 

[kateel]

Yeah...Monday's are my day that I drop down. They are ALWAYS my worst day of the week. I get VERY irritable, sweaty, tired, etc. I'm certain this has something to do with the pred drop. Today was the drop from 20 to 10...it was my worst day yet. Needless to say, I am VERY worried about next weeks drop from 10 to 0.

My GI doc is just TERRIBLE, so I am hesitant to even call and share my concerns with him. His answer is always either "stay with the course of treatment I originally prescribed" or "check with your general practitioner" and it always seems that I'm putting them out by calling....

 

[ChefShazzy]

Yikes, 20 to 10 is a big drop, too!! No kidding, you must feel horrible! Maybe go back up to 15 for this week, and then drop to 10 next week? When you get to 10, then go to 7.5 the next week, then 5, then 2.5... (cut a 5mg pill in half). Call your GP to be sure, and make sure you have enough pred to last you the taper.

And, maybe work on finding a new GI! Sounds like the one you have sucks the wet end, big time. Hope you feel better soon!

 

[kateel]

The problem is that I only have 60 mg left total...

I'm in the process of switching docs. The only problem is that the new doc I've been referred to can't get me in until September, so I'm stuck with this other guy for now. (sigh)

Are these symptoms that I'm having "normal" for a taper?? (the sweating, irritability, etc.)

 

[kossy]

You should NEVER have the feeling of "putting them out" by calling. They are doctors, that's their job. If they make you feel that way then they are not the doctor for you. Your GP should be able to prescribe you more till you see your new GI. Or does your GP also make you feel inferior?
If he refuses to give you more just tell them you'd like it in writing so you'll have someone to sue when you go into adrenal failure. I don't think that will happen in your case but sometimes you have to be an ass to get what you need.

 

[kateel]

No, my GP is just AMAZING!! I will call her in the morning and see what her thoughts are. I guess I hadn't really thought of calling her about this, but with the way I felt today, I definitely think I need to taper a bit more slowly. This has by far been my worst taper day, so I can't even imagine what the 10 to 0 would do to me.

 

[Grumbletum]

Good, glad you have a GP you have faith in Definitely call her - I get those tapering symptoms you describe too. If there is one thing I've learned from this disease it is to listen to your body - you know it best. And speak up and push for your rights. Don't take the chance that things will deteriorate because you're not getting the treatment you need. :kiss:

 

[archie]

Those symptoms sound right with tapering 'roid rage' my family called it so I must've been quite grumpy!!! instead of cutting the pills in half I took them every other day instead. I found the taper from 20 to 10 the hardest but I didn't take 15 either.

 

[Jennifer]

"check with your general practitioner"

WHAT? There's no way, so fired! lol. I'm glad you're seeking someone new, just wish you could see them sooner. Your GP may be able to help you with the taper by prescribing 5mg tabs and if needed you can break those in half (if you can cause they are small) or even 1mg tabs if needed. The slower the taper the better.

 

[kateel]

That is EXACTLY what my GP did!! I talked with them yesterday and she prescribed 5mg for one week, 2 mg for one week, then 1mg for one week. Thank goodness!!

In the meantime, I think I'm starting to flare up again...(I'll be starting a new post on that soon...not sure what to do)

 

[chez]

Hi,I've always gone from 10 to 5 and then every other day for a week,I think you'd be more likely to get withdrawrals!hope all goes well for you, cheryl