Steroids r not right for everyone: If u r... - Behçet's UK

Behçet's UK

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Steroids r not right for everyone

Kashkabear profile image
8 Replies

If u r feeling bad side effects from steroids discuss it with you docs befor it geys worse . Also there are other side affect u cant see. I say this because of personal experience and i wish i had of known there was another option..... Steroids are not the only option.

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Kashkabear profile image
Kashkabear
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8 Replies
nicholls profile image
nicholls

Currently trying to reduce steroids as they are poisoning me. What else is there you can take to replace the steroids

Kashkabear profile image
Kashkabear in reply to nicholls

Steroids poisoned my mind. They destroyed my bones . And ruined my stomach. They are the reason i broke both my hips falling over getting out the car. Im 33 years old. Im on methertrexate and infliximab now. Colchercine is another med. The methertrexate or colchicine can be enough for some symtoms it cleared my ulcers. Infliximab is a infusion for more serious symptoms. It has reduced the inflammation around the anurisms in my lungs.

Kashkabear profile image
Kashkabear in reply to nicholls

If u telll the doc u r not taking steroids no more. They will find discuss other options. Just remember all the meds for behcets are poison . Unfortunate but true.

rooser1 profile image
rooser1

I agree. I for some reason, during my worst flare ever, was never offered steroids- granted they did not know it was BD- but with the arthritis/meningitis/oral and genital ulcers and skin issues... you'd think they would have been offered. I'm glad they weren't. I hear horror stories about the second people go off of steroids- BD comes back with a vengeance. I think it's because people do not let the Body heal. I didn't have any medication except my tons of antibiotics and antifungals and then finally my arthritis medicine much later. I rested. I slept as much as I could. Literally went to work and then came home and slept until next day. I did an anti-inflammatory diet with anti-candida. Slowly but surely over 3 months I pulled out to a half normal.

When I went to a new Rhuem- she was shocked that I had been through flares with zero prednisone. I'm glad. I don't have a "symptom masker." I find that the second something feels off- I eat my anti inflammatory foods and hit the bed.

Feel well, all.

Kashkabear profile image
Kashkabear in reply to rooser1

Can u please tell me more about your anti inflammatory foods.

rooser1 profile image
rooser1 in reply to Kashkabear

Look at my other responses to get a more detailed look as I found out for myself- I am sucrose intolerant. I guess it doesn't matter anyways because sugar is inflammatory. Here's a link for some basic info.

health.harvard.edu/staying-...

Maria547 profile image
Maria547 in reply to Kashkabear

Here you can find everything you need to know about the foods which cause and also which fight inflammation. Take a look at it- coloncleansetoronto.ca/blog... and try adding it in your diet.

Dr-CJA profile image
Dr-CJA

I use self hypnosis daily and a simple diet to manage my BD and have been steroid free and in remission for around 14 years. Initially I used a very strict healthy eating regime (no animal products - which meant no meat, dairy, fish, eggs etc, no alcohol or processed foods, no candy/sweets/chocolate, no citrus fruit). I switched to beans & pulses and organic veg and fruits such as grapes, plums, melons and apricots. I've slowly introduced other foods in the past five years and now have the occasional drink and chocolate and fish on my vacations. I do occasionally have Greek yoghurt with fresh fruits such as blueberries. However oranges will cause ulcers in the mouth, nose - so best to be avoided, likewise pineapples . Changing my eating regime was hard for the first month - but I soon got used to it and really enjoy it now. You could try Dr Sebi's alkaline food healthy eating regime too - there's a group on Facebook who post lots of recipes.

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