Coming off Prednisone and paying a price

[SupportiveMom]

D has been pretty much on Prednisone since diagnosis September 2012. With doctors orders we are tapering off prednisone on the longest taper ever as the GI thinks she is steroid dependant. She is now at 10 mg/15 mg taper (every other day 10, other day 15) and has been having symptoms back strong since she tapered at 20 mg 2 weeks ago. She is back to vomiting, severe pain EVERY bathroom trip and the urgency to go is stronger than ever.

I know she needs to be off the prednisone but this is becoming stupid crazy. Her spring break she spent she has canceled so much to do anything at all, and her highlight of the week was to travel down to my work to have lunch with me that took her 3 hours longer just to feel well enough to make the transit trip and then proceeded to throw up her lunch 5 minutes in.

I just don't get it. Has anyone else had issues tapering off? When do I say enough knowing the ramifications of her staying on steroids? Oh and here favorite new symptom? Hair loss in clumps like a kid going through chemo... I am So SICK of this disease!

 

[my little penguin]

I have no easy answers for you some can be from withdrawal from long term use and some due to the disease .
DS was not able to get off pred while on Mtx.
Even on remicade after only three months of pred he still had issues while tapering .
Hair loss night sweats stomach aches etc...
But it worked out in the end .

 

[SupportiveMom]

Is DS still on prednisone? How long on it?

 

[imaboveitall]

V was classed as steroid dependent. She was on a total of 18mos, failed other drugs along the way. Could not come off without symptom return under 20mg.

IV steroids and dual therapy (Imuran and Remicade together) got her well. So scary but it worked, even as I railed against it.

 

[my little penguin]

DS was tapered off pred starting when he started remicade .
He had low lying symptoms afterward he finished the taper so we upped the dose and frequency of remicade .

 

[Farmwife]

Grace is not declared steroid dependent yet but Grace is having issues with the adrenal gland and making hard to go with out prednisone. I hope you find answers soon.

 

[Tesscorm]

No advice, just sorry you and she are having this difficulty. :ghug:

 

[SupportiveMom]

Its hard because some of the symptoms are similar to Crohn's. Hard to know what's what. I really hope she isn't steroid dependent.. I am hoping humira and mtx is enough with the prevacid. It would be nice to find some reduction in meds!

 

[Farmwife]

Ironically your kids are on the same meds and I'm having the same issues tonight. Hugs

 

[my little penguin]

We switched from Prevacid to Zantac and added singulair as well.
DS has a lot of allergy issues the thought was Zantac is an h2 blocker and would help with mast cell ( inflammatory ) issues . Singulair same principal different drug.
Both helped with DS stomach issues .
Might be worth asking the Gi about since she is maxed out on other meds .

 

[Maya142]

I don't have any experience with this, but just wanted to say I hope things get better soon! Poor, poor Dani that sounds miserable! Thinking of you:ghug:

 

[theOcean]

My only issues with tapering off were hair loss (which does stop, I promise -- my hair is lovely and as thick as it was before) and severe cystic acne, so your daughter isn't alone in that. As for the dependency: good luck, and I hope she isn't dependent on them.

 

[LCATC945]

D has been pretty much on Prednisone since diagnosis September 2012. With doctors orders we are tapering off prednisone on the longest taper ever as the GI thinks she is steroid dependant. She is now at 10 mg/15 mg taper (every other day 10, other day 15) and has been having symptoms back strong since she tapered at 20 mg 2 weeks ago. She is back to vomiting, severe pain EVERY bathroom trip and the urgency to go is stronger than ever.

I know she needs to be off the prednisone but this is becoming stupid crazy. Her spring break she spent she has canceled so much to do anything at all, and her highlight of the week was to travel down to my work to have lunch with me that took her 3 hours longer just to feel well enough to make the transit trip and then proceeded to throw up her lunch 5 minutes in.

I just don't get it. Has anyone else had issues tapering off? When do I say enough knowing the ramifications of her staying on steroids? Oh and here favorite new symptom? Hair loss in clumps like a kid going through chemo... I am So SICK of this disease!

I literally am going through this right now. I started pred last year and the doctor started tapering me I got down to 2.5mg from 30mg and I flared. Badly. He bumped me up to 30 again and then after a couple blood tests started me on imuran for the long haul. It's going on 2 weeks and I feel better I'm back to eating two meals a day. Still smaller than I used to. And I have not thrown up until right now actually. Last time I threw up was over a week and a half ago I think.

 

[LCATC945]

My only issues with tapering off were hair loss (which does stop, I promise -- my hair is lovely and as thick as it was before) and severe cystic acne, so your daughter isn't alone in that. As for the dependency: good luck, and I hope she isn't dependent on them.

I hate the acne I get from prednisone. I even get it on my shoulders. (Didn't mean to gross anyone out by that lol)

 

[theOcean]

I hate the acne I get from prednisone. I even get it on my shoulders. (Didn't mean to gross anyone out by that lol)

Mine was totally unbearable -- I was so embarrassed to be seen by anyone!! It's the reason I'm on minocycline now. The antibiotics were the only things that could help it.

 

[LCATC945]

Mine was totally unbearable -- I was so embarrassed to be seen by anyone!! It's the reason I'm on minocycline now. The antibiotics were the only things that could help it.

I just have a beard, a hat, and a Tshirt on to cover most of them. And the beard is also to help me look my age.

Don't know if this is true but I heard that people with crohn's tend to look a lot younger than they are.

 

[SupportiveMom]

The acne is nasty, and you are right its everywhere, face and shoulders. Since she is a teen all her peers have it too so its not out of the ordinary. She is on prescribed medication for the acne but it doesn't do much. Thanks for letting me know the hair comes back. We used to thin Dani's hair because it is so thick. This is the first time we won't have to and she is not happy about it. She is sick seeing all the hair in the shower she says she feels like an old person. I will tell her its gonna come back. That should put a smile on her face!

 

[theOcean]

When my hair loss from prednisone was at its worst (and my hair was much longer) my mother had to get someone to come in and clear out my shower drain. They actually found an entire pound of hair clogging it, which was horrifying.

But it does eventually stop -- I find it takes a month or so after being off of Prednisone, at least for me. I was only ever at 40mg with it at the highest, I think. (Higher if I include the solu-medrol I was on at the hospital.) I'm sure you're taking good care of her, and she's in a good city for treatment, at least! I'm living in Toronto, too, though I'm with Mt. Sinai and my GI is located there, too.

 

[LCATC945]

I doth think I've ever experienced hair loss. Then again I had short hair during jr. High so it wasn't really noticeable. I'll keep a look out now that I have longer hair after I started imuran

 

[SupportiveMom]

My D was counting herself as a lucky one not having the hair loss until this happened. Unfortunately we will have a lasting memory of it as her 8th grade grad photos happen next week. I don't think even Rogain works that fast! She is asking to get her hair cut short now I think to mask the hair loss. She thought most didnt even notice until one of her friends asked if she got her hair massively thinned. Her friend felt bad as she had no idea you could lose your hair with crohns. Teaching kids every day.....

 

[LCATC945]

If I could I'd give her my hair. I'm growing it out just because but I would have no problem going bald. I'd embrace it.

 

[SupportiveMom]

We switched from Prevacid to Zantac and added singulair as well.
DS has a lot of allergy issues the thought was Zantac is an h2 blocker and would help with mast cell ( inflammatory ) issues . Singulair same principal different drug.
Both helped with DS stomach issues .
Might be worth asking the Gi about since she is maxed out on other meds .

I have been wondering if the Prevacid even does anything anymore. I will speak about the Zantac. Wonder if they have a prescription form of it. OTC isn't covered by our insurance, and I can't claim it on our taxes. I use Gaviscon for my acid reflux and am starting to wonder if that could help deal with the gas & pain in the esophagus for her. I know Crohn's & acid reflux aren't even close to the same thing, but the area it treats is (D has crohn's in her esophagus too). Anyone ever try it on their kid?

 

[theOcean]

I have been wondering if the Prevacid even does anything anymore. I will speak about the Zantac. Wonder if they have a prescription form of it. OTC isn't covered by our insurance, and I can't claim it on our taxes. I use Gaviscon for my acid reflux and am starting to wonder if that could help deal with the gas & pain in the esophagus for her. I know Crohn's & acid reflux aren't even close to the same thing, but the area it treats is (D has crohn's in her esophagus too). Anyone ever try it on their kid?

Zantac is known as Ranitidine if you're looking to ask for a prescription! I've used it before when I've had bad nausea/vomiting issues and it worked really well.

 

[Stephyjane]

Hi supportivemom, I just wanted to send you my support. My daughter had a terrible time trying to wean off steroids and a combination of Infliximab, Aza, lansoprazole and antibiotics made it possible for her to wean off them in the end. She had become steroid dependent.
I really hope your daughter is feeling much better soon. When Ella was on a medication called Salofalk her hair fell out in clumps but did recover. Also with ill health there can be a delayed response with hair loss and once your daughter is on an even level again it should improve if that is part of the reason.
Steph x

 

[SupportiveMom]

So far the only positive she has found (besides taking less pills) is her bathroom schedule has changed. She used to wake up about 2 am, then again at 5, then 7:15 to go the bathroom. She still does the 2, but now makes it to 6:30. One less trip to the washroom is a positive! (I'm not going to tell her there probably is no relation)