Need help, Pred dosage, no taper

[RedReiner]

Hi, new here. I have had issues with Crohns for the last 5 years but only treatment was Metro and Cipro. I was getting along fine, just very careful about what I eat.
Anyway this last time I was admitted for a fistula and spent a week in the hospital, no surgery. last tests showed it was not there but crohns was inflamed. It doesnt hurt me at the moment. I have no insurance or job now, they discharged me with a pharmacy to take home, one of the meds is prednisone which I have never taken before. I was reluctant to take it. I knew there was a reason. there was no taper up, 40 mg a day to start, take for 3 weeks until gone. no taper down. I reacted badly to it and can barely function. I can not just stop taking it but I did cut it to 20 mg a day. I have tried to get a Dr. to return my calls to help me with getting off of it properly but so far, the only call I got was from the Dr I saw in the hospital and it was his nurse informing me that I needed to go elsewhere as Crohns was to complicated for his office to handle.... I said what about the pred??? she said, he cant help you with that either, you need to go to big name hospital in the city and they will take care of you there...I have an appt with GI doc on the 14th. the pred is killing me. Is that a normal prescribed dose? they just put you on it for a month and then stop it cold turkey???

 

[BLM]

Im on 30mg of pred, I started at 40. My GI says taper slowly to keep disease in remission and to avoid adversive side effects of quick withdrawl. Were going to taper down 10mgs every week and then when at 10mgs either stop all together or transition onto something like Entocort. So go slow, and if you noticing symptoms when you taper, then your going off to quickly.

 

[RedReiner]

I still dont know why they would give instructions to just take until gone, no tapering off. I reacted badly to it, my eyes are bulging, my skin crawling, my muscles are quivering, I am shaking uncontrollably, I can not concentrate and am having panic attacks. never had a panic attack in my life! my heart is racing and I have a migraine.
I was just wondered if anyone else had ever been given pred that way. I will be finding a doc somewhere to give me a script for lower dose pills. I tried not taking it and all of the above got way worse.

 

[Nyx]

Prednisone needs to be tapered slowly. I started at 50mg and tapered down to nothing over 6 months. Never just stop taking it...it's best to take a higher dose and taper down by 5 mg a week till it's gone. When I started I was taking 50mg for 4 weeks, then tapered by 5mg per week.

 

[DustyKat]

Hey RedReiner,

How are you going?

My son has just been commenced on Pred and his dosage is 40mg for three weeks and then taper by 5mg every 5 days. You should not not stop taking that dosage for that length of time without tapering.

Dusty.

 

[RedReiner]

I finally got a doctor to call me back, they could not explain why the instructions were to just take 40 mg a day until gone. but anyway I am having some severe reactions to it and she told me to cut it to 20 mg a day, and if that was still to much to cut to 10 mg and hold it there until I saw the GI doc on the 14th. she also prescribed a sedative similiar to valium that I havent picked up yet to try and counteract the pred problems. I had already cut to 20 mg a day and although still shaking and jumpy, its better. my eyes are not bulging as bad lol.

 

[Nica]

Hi Red,

Prednisone is great at getting a Crohns flare under control, the side effects suck. Something that helps me with prednisone mental issues is remembering it is just the drug, its not really me who feels like this and taking a few deep breaths to re-focus.

If you continue to have shaking or other really bad side effects I would go to the E.R. (preferably in a bigger hospital that knows what they are doing, like the one your new GI is on staff at)

I have always tapered pred down 5mg a week down to 2.5 mg then quit (so 40, 35, 30 etc) You also have to watch for an increase in Crohn's symptoms in this time.

May I suggest you look into treatment options so you have an idea where you want to go with it. Abbot (The makers of Humira) have an assistance program to help people get the meds, I assume remicade has one as well. The immuno-suppressants (Imuran and Methotrexate) are less expensive. I have found being prepared for my GI visits help, and for this first one you are most likely going to get A LOT of information quickly.You may also want to write down questions you have for the doctor ahead of time so you can get the best care possible out of the visit and not need to go back so much possibly...

Lastly, worrying about the costs of meds and doctors when you are sick is very, very hard. Maybe you should look into some sort of Medicaid for your area.

 

[RedReiner]

Thanks Nica, I have gotten myself well informed on Crohns as its been the suspect for 5 years now. I had an aunt with it also. and now possibly a brother. The pred thing, some of the side effects were very severe, the pressure in my eyes and the shaking. I do not want to mess with my vision, its not an option. things were getting blurry and thats to scarey. I have yet to qualify for medicaide, even though I have no job I am not pregnant so the answer was no lol. we are trying again though! The new GI doc has asked that I see him even though I have no insurance, I think he has a plan to get me on remicade or humira. we shall see! thanks for the tips!

 

[Nica]

Oh with a family history of crohns yea its a huge suspect I imagine! I don't blame you for not wanting to mess with your vision.

Isn't that just frustrating, not pregnant so the answer is no. Just not right! I hope things are going well for you, good luck!