Weaning of prednisone- Symptoms returning

[traci0531]

Weaning off prednisone- Symptoms returning

So I'm supposed to go down to 10 mg tomorrow. Been tapering down from 40 mg. This week, I've noticed more Crohns symptoms but today has been hell! Dr called and said move back to 30 mg till Monday and let him know how I feel on Monday. He said I'll probably need to do a slower taper, and that this would be a indication to start considering a biologic like Humira. Any advice on weaning of prednisone and starting Humira?

Current Meds:

Prednisone 30 mg
Entocort EC 9 mg

 

[Johnnysmom]

Its not uncommon to need to taper slower. Do they have you in a maintenance medication? Usually they use the Prednisone because it can take up to 4 months for other meds to kick in. Having difficulty tapering the prednisone could be an indicator that you would need a stronger med like Humira. How long have you been on the Prednisone? My son was on the full dose 40mg for 4 weeks before he started to taper. Usually you go down 5 mg per week after that. We started 6mp for his maintenance med at the same time we started prednisone so it would be working for him by the time we finished the Prednisone taper. We have no experience with Humira but there are many on the forum who have, I am sure they will be along shorty.

Hope you are feeling better soon. (((((Hugs))))))

 

[traci0531]

I started at 40 mg in December decreasing by 10 every week. Tomorrow was supposed to start 10 and then I was supposed to do 5 mg for a week and be done. I'm now starting again at 30 and seeing how I do the weekend before we decide what to do next. I am taking Entocort as well. The prednisone side effects have been terrible, so I was hoping to be done with it.

 

[Mia E]

Hi traci,

I also recently had trouble with taper and the gi made similar recommendations- go back to 30mg for 2 weeks and then drop down 5mg every week. I am on my last week now of 5mg and the symptoms have eased (except abut of trouble with over indulgence at Christmas!). Hopefully you will find the slower taper has the same effect!!

Do u think he will still consider Humira if your symptoms subside?

I see him on the 12th and hope he is happy for me to stay on pentasa, he did say that we would consider a stronger drug if prednislone didn't go well. As it has calmed now I hope that means I can stay on pentasa... Or will he look at the problems with tapering as a indiicator that I need to move on from pentasa?

Thanks x

 

[traci0531]

Yeah I hope the slower taper helps, too. On the phone, he said that not being able to taper meant we should consider stepping it up to a biolic like Humira which I am pretty nervous about , but I'd love to feel close to myself again so I will consider it. I have three children under the age of 8 and a hubby that's in the military. I need to find a treatment that works i

I'll have to ask him about Pentasa. I know Humira is pretty $, but with Tricare and doing it mail order, it's like $25 as long as we get prior auth. If I have to go the biologic route, I'd prefer to do it in the comfort of my home instead of making a day of it every 8 weeks with Remicade.

I hope your dr is happy with your progress! I was so excited to be so close to no more prednisone! Hopefully, the weekend goes better.

 

[Johnnysmom]

Pentasa is not an effective drug for crohn's disease unless it is used in combination with an immune suppressant or biologic. It's approved use is for Ulcerative Colitis. When my son was diagnosed the G.I. suggested we use 6mp for maintenance after the prednisone. I did some research and asked him if we could start with a drug like Pentasa (5 asa). He said it would be like using an aspirin for a brain tumor. (his exact words). If you choose to go this route just make sure you are getting regular testing of inflammation. This disease can be silently causing damage.

 

[traci0531]

My GI has mentioned Imuran before but not Pentasa to use for a maintenance med. So many meds. I just want to feel better!

 

[guest78]

Hi,
Currently worried about the same thing, I got down to 10mg of pred last week but some symptoms started coming back and so Dr upped it again but only to 15mg. I'm hating the side effects so hopefully I can be off them soon.
I am already on Humira shots. I was incredibly nervous about it before I started, especially after reading pages of horror stories online. But it really is no where near as bad as I had read. In fact they kept me well for nearly 2 years - staying pretty much completely symptom free. It really has been my wonder drug! I give them to myself once a week and they started working pretty quickly - within about three weeks I was feeling a lot like my old self again! I can understand why it's a bit nerve wracking though, it is a step up in the meds department. If you want any more info then please don't hesitate to contact me I'd be happy to help if I can!
X

 

[traci0531]

I'm back to 30 mg since Friday, but it's not helping :/ Ugh.... I'm nervous as to what my GI will say on Monday. He already mentioned surgery and said bc my crohns is localized to a 3-5 inch area of my small intestine, I could go symptom free for a long time with meds. Maybe I'll start Humira and it will help. I have so much pain right after eating. It's like a burning all over spasm pain and extremely loud sounds. It's kind of embarrassing. Sigh. I'm so glad I have this place to go to and I'm not alone.

 

[guest78]

Im sorry your in so much pain, thats really rubbish Hopefully the GI will be able to help you or offer some solution on Monday.
Maybe the Humira will work for you? Would you prefer to opt for surgery or try the Humira?

I have been on contact with my Dr again today as my symptoms are getting worse being on 15mg. Im hoping theres something else they can do rather than up my dose some more as I really hate the stuff. I had a small abscess and fistula before so not sure if its that returning or whether its active crohns but i am in quite a lot of pain after and during going to the toilet. which is not great! it all feels like a never ending cycle of being poorly at the moment.

 

[traci0531]

I had an abscess too! Treating that is what took so long for me to start the prednisone and entocort. I was on my last hope with a CT not showing it before I was gonna have surgery. I don't think it's back bc with the abscess, I had extreme right side pain and that's not what I'm feeling now. I don't know how I feel about surgery. It seems like it should be a last resort, but then when my dr tells me that I could go symptom free for years and feel normal again, it sounds amazing. I'm more nervous of the recovery time if I had surgery. I have three children, so the thought of me not being able to fulfill my motherly duties kind of freaks me out. I really hope your dr changes your meds to something that makes you feel better. So, do you think the Humira is helping enough for you? I've read about adding things like Imuran to Humira to keep it working well. Trading one med for another. I guess it could be much worse. We could be out of options and looking only at clinical trials. Ugh. Feel better!!!

 

[guest78]

The Humira kept me well for nearly two years, so it was doing its job. however i have recently had a nasty flare up, the worst i have ever had. the drs were confused by this as the humira should have kept me well. they arent sure why it started to be less effective. i am on 150mg of Azathioprine to help the Humira work, i think thats probably why it kept me symptom free for so long.
Thats good that an abscess doesnt seem to be an issue for you right now you dont need that on top of everything else eh! i can see your point about surgery, the thought of it scares me as it feels so drastic and almost, once you go down the surgery road theres no going back.
im quite scared as if the humira doesnt keep me well, then there arent many options left, apart from surgery...
I really hope the Drs change my meds or find something else that works.

 

[traci0531]

Well that's great that it helped for so long! It gives me some hope. Do you prefer doing the shots in your stomach or leg? I'm think stomach would be better because of some cushion, but I don't know. I just want to get this somewhat under control soon. I really thought I was gonna have to go to the ER last night but I made it through. Maybe it's gonna take a few days for the 30 mg of pred to kick in again. The insomnia sure came right back, though!

 

[guest78]

for the first year i injected in to my leg as in my head i really struggled with injecting into the area which was the cause of the pain - my tummy! but i randomly tried my stomach about a year ago and found it to be easier to inject than in my leg. theres more pinachable fat there for me! and i now alternate between the two areas but generally do it in my tummy i also ice the area first for about 10-15 minutes which i find works wonders.
im sorry you had such a rubbish night! i had an horrible night, insomnia wise! pred is nasty stuff!
i hope we both get it all under some level of control soon! im starting to think the pred isnt really working properly/like it has before! which is scary stuff!

 

[traci0531]

Yeah, I hope we get better soon, too! When I first started the pred, I could tell a HUGE difference. Now, I'm back to pre-prednisone weight and it just doesn't seem to be helping. Sigh.... Maybe today will be better for both of us

 

[guest78]

Yes! same with me, it did seem to really work at the start - it was gradual but i improved so much, and now it seems to be going down hill.
I really hope so

 

[traci0531]

Just heard back from my dr. I'm gonna see him on Thursday now instead of the 24th. He thinks I should give Humira a go and stay on the prednisone and entocort for a bit and then start tapering. We'll see how it goes!

 

[guest78]

I've spoken to my Dr too, she said its a difficult situation as I'm already on azathioprine, Humira and steroids. But I'm seeing her on fridaybso we shall see.
Good luck for Thursday! The Humira sounds like a good bet
Xxx