Does colchicine help with energy levels? - Behçet's UK

Behçet's UK

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Does colchicine help with energy levels?

Icefire profile image
12 Replies

Happy new year all. I hope your doing well.

I had a flare over Xmas ( I think because of gluten but future will tell). My ankle started to swell within a few hours of accidental gluten exposure.

I've so far managed my condition with diet and lifestyle but Rhuematologist seems quite keen for me to try Colchicine. My main symptoms are erythema nodosum and fatigue at the moment. I usually always have a mouth ulcer or two. I'm sure joints are connected with gluten in my case and so have been good for 9 months accept for the recent gluten incident.

My eyes flares seem to correlate with eggs and gluten.

I've decided to be well this year and do everything I can to have more energy and less symptoms. Do you think Colchicine will increase energy levels if I can tolerate it? The Rhuematologist has given me a prescription to cash in if I feel it necessary.

Thanks in advance for any advice.

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Icefire profile image
Icefire
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12 Replies
magician profile image
magician

Hello Icefire!

I have been taking colchicine 1 mg since 2009. Despite that, there are days when fatigue is just too much. My thoughts: I cannot say that colchicine helps relieve my fatigue. Yet I also cannot tell if my fatigue would have been worse without it.

I wish I could have given you a clearer response…

As a side matter: I was extremely hesitant to take colchicine because it can get toxic - so far, I have not had tummy problems. But sometimes my leg muscles get very painful to the extent that makes me suspect rhabdomyolisis - but then it goes away without intervention. I still take colchicine

Best wishes

Icefire profile image
Icefire in reply to magician

Thank you. I think I'll see how I go without it but will consider it if things get worse. Behcets is so random. Two weeks ago I couldn't walk but this week I'm fine! (So far fingers crossed!)

magician profile image
magician in reply to Icefire

Yes, it is so random. My state of wellness can fluctuate so much and so many times in a single day. Planning is sometimes a luxury.

Wishing you well!

Jaxxi profile image
Jaxxi

Hi there! After several months of taking colchicine, it definitely increased my energy levels. It also improved ulcers, scalp sores, joint pains and rashes. I was only able to take it for a couple of years though as eventually it gave me some tummy problems. I switched to hydroxychloroquine, which is slightly less effective for ulcers but works very well indeed for joint pains and overall energy levels. And no tummy issues. In my case, if inflammation is under control then energy levels increase.

Icefire profile image
Icefire in reply to Jaxxi

Thank you.

Kalu_kalu profile image
Kalu_kalu

Hello! I hope you are feeling better… a little unrelated to your question, maybe, but I found it was relevant. For me, the only thing that I can directly relate to improving my fatigue is the CBD oil. It helps with pain, too. I live in Canada so it is easy to buy it. And I take the minimum dose with results ( and with the minimum THC possible). It was so impressive that I kind felt too agitated… so I take only once a day. Unfortunately, my symptoms are not very objective…. Anyways, please let me know if you want to know more. I take Otezla. Take care

Icefire profile image
Icefire in reply to Kalu_kalu

Thank you. I'll do some research.

Solbs profile image
Solbs

I used the medicine against Behçet for several years, but I don’t use it any more. Instead, I am using steroid poultice and when it gets too painful, maybe once a month, specially, when the weather is too cold, I a take a light pain killer medication.

Icefire profile image
Icefire in reply to Solbs

Thanks for reply. Why did you stop taking it and did it improve energy when you took it?

Icefire profile image
Icefire

I forgot to ask. Can you take it as and when or do you need to take it continously?

Solbs profile image
Solbs in reply to Icefire

You need to take it continuously until the Behçet subdues . I took it for fifteen years on daily basis, until my ophthalmologist told me that I didn’t need it any longer. I had frequently inflation in the eyes, which does not occur any longer. Thanks to God, I see very well. I got arthritis for different reasons than thé Behçet. The medication does no effect on the energy level. It keeps inflammation into check. I take on a daily basis multivitamins which keeps me energized.

Good luck.

Sunset profile image
Sunset

Nutrition plays an important role in Behçet's disease. Patients should not eat gas-producing foods, pickles, dairy products and spicy foods. By activating the hormones in our brain and intestines, we can improve our quality of life.

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