Today is a good day!

[Luciana]

Today is a good day…..I have just been given the go ahead to start LDN!!! (low-dose naltrexone)
I am so happy right now and i finally feel hopeful that things are gonna work out

But I'm on 30mg Prednisone still after a bad flare….So my question is has anyone else started LDN while being on Prednisone?
How did you do it?

Is it better to taper down to 20 mg prednisone at least before starting LDN?
The furthest i have been able to taper down to is 25mg before the Crohn's symptoms returned
and i had to go back up to 35mg prednisone a few weeks ago.
But it takes so long to taper. And i want to start LDN as soon as possible.
But i want to do it the right way to make sure that it's successful.

I can't ask my Doctors these questions. Since i am their first patient to try LDN.
Incase you are in a similar situation and want to know how i convinced my doctors (i am based in germany where LDN is not very common)
just ask

I am so thankful for any advice from this wonderful forum.

THANK YOU SO MUCH
Hugs
Luciana




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Brief history:
I've had Crohn's for 25 years.
Recent medications:
Remicade (gave me lupus like syndrome)
Humira (stopped working)
Prednisone (since March 2019. Still tapering from 100mg)

Was hospitalised 3 months ago with severe flare - Stenosis in the sigmoid colon, spread out inflammation, unable to eat and almost had surgery.
Instead was put on 100mg Prednisone while deciding which medication to take next.
Doctor agreed that a 3rd biologic might not be the answer.

Been surviving the last few weeks on the SCD chicken soup and the SCD yogurt which has given me a lot of relief. SCD = (Specific Carbohydrate Diet)
Prednisone gave me Candida and Herpes so been treating this with homeopathy on the side. My biggest issue right now seems to be the Prednisone. Too many side effects, especially mentally. But i am taking Wormwood supplement and i think it's helping. I also have Vitamin C Infusions twice a week and Vitamin B Injections once a week. And iron infusion once in a while. That's all i can think of right now.

 

[C J]

Hello. sounds like you have lots of complications as I have but not problems with the meds causing other. So Sorry.
I have Crohns 48 yrs now and 1/4 small intestines left as 48 yrs ago they didnt have the meds they have now, so Crohns flare up, collasping, they kept removing more now, left with 1/4 of my small.
I have been on all the meds you are but didnt stop the active Crohns but had no other complications you are having, as if the Crohns isnt bad enuf, so sorry for you....
the Steriods for 20 yrs, then Remicade did good, but later active Crohns losing weight I didnt have to lose and bleeding, they put me on Humira for 3 years, did good but active crohns with problems came back 2 X so off that and been on Stelara past 6 months, put 10 lbs back on, bleeding stopped and feeling better, no active crohns now since on Stelara, so ...........
My question is these Humira Stelara and many others target different area's I hear, DR not suggesting to t ry one of the others, Enyxxxxx something, Stelara over the LDN...............??

Never give up, something has to help.
CJ

 

[Luciana]

CJ you are a true warrior! Can't even imagine all the things you've gone through.
I'm so sorry to hear about all the surgeries. It's true that in the last few years so many things
have advanced when it comes to medications. And they are still learning about the immune system
and questioning if suppressing it really is the best way forward. Biologics don't seem to work for everybody that's for sure. I have a lot of faith in LDN and I prefer this over Stelara to be honest. Because my experience with Biologics so far have been quite traumatic. But i know that for some it's a miracle and a life saviour. Everybody is different it seems. Luckily i feel quite ok with my Crohn's right now, but then again i am on 30mg Prednisone. So i pray that LDN will work
Send you a hug!