views on colchicine

[Tiffrose]

hi I have just started yesterday on colchicine 500mcg twice daily to treat expected BD and to slowly wean off prednisolone,

The pharmacist yesterday was quite concerned about me taking these meds and after reading online about the toxicity risks I too was a little alarmed

I just wanted to know about other people’s experiences on colchicine , I have been on prednisolone for around 3 months now with a flare every time I try to reduce , so I’m happy to try and get off them as the unwanted side effects that come with steroid use are much to be desired !

I know all meds come with potential risks and have to out weigh risks to benefits , but be reassuring to hear of any of your experiences

[muttiof3]

Hi Tiffrose

I was on a low daily dose of colchicine for a good 21 years. And it really seemed to control my flareups fairly well. When it didn’t, that’s when they would supplement with prednisone.

I don’t think I had any major side effects with colchicine except that I would say 16 years in, when I would get blood work done, my liver numbers would be high. I was eating right, not really drinking a lot of alcohol, etc. It was a little frustrating because my doctor said it was just a fatty liver. I’ve been exercising and eating right for the last seven years. The numbers were up but not overly concerning but it just bugged me that no one considered that it could be medicine related.

About seven months ago I decided to stop taking colchicine (with my doctors approval), and my liver numbers went back to normal. (Hah! Not a fatty liver!

Another thing I didn’t like about colchicine is it just doesn’t play nicely with anything else. I don’t sleep well and I read about taking magnesium and I double checked to see if magnesium was OK to take with colchicine. It’s not recommended. Turmeric, while I was taking colchicine, gave me uncontrollable diarrhea. Once I stopped taking colchicine I’m able to eat Turmeric. Oh, I also like grapefruit and you’re not supposed to have grapefruit when you take colchicine. It just seemed like every time I looked at taking a supplement for my health, when I’d go to check on if I could do it while taking colchicine it seemed that majority of the time it wasn’t recommended.

Be your own advocate. My doctors didn’t seem to be aware that colchicine doesn’t “play well with others”. So before you take supplements, if you’re taking colchicine, look it up online and see if there are any studies that have shown taking colchicine with whatever supplement you want to take, is recommended or not.

One thing that gets reinforced for me with this website is that everybody’s body responds differently to drugs. And while I may not have had problems with colchicine you might, but you won’t know until you try it. In my opinion, you are better off taking colchicine on a regular basis then you are prednisone.

It’s great that your pharmacist voiced concerns about taking colchicine. That’s part of their job to make sure the doctors aren’t making mistakes. You did the research and unfortunately doing that can usually end up leaving things much scarier than they need to be. Don’t start with a giant dose and work up if needed. See how you feel. You can always stop taking it. Of course the usual disclaimer…work with your doctor and don’t just randomly stop taking it. Find out what you need to do to stop taking it. All these drugs are different.

Oh, something else, colchicine has been around for quite a while. So I feel more confident about starting colchicine to try to control my Behcets than some random new drug they’ve come out with or have approved to use on Behcets.

Hopefully my comments haven’t been to random or confusing. I hate taking all of these medicines and would rather not be taking any of them but things are more or less under control so I just keep on swimming.🤓

[gillianTS]

I agree with muttiof3 on many points. Colchicine is a widely used treatment for behcets for a great number of people with none or very little side effects. For me my experience was not great, I had a large toxic reaction to the drug which was continually discounted by my GP, I felt so ill and ultimately a large rash appeared in many areas of my body, still the GP discounted. In the end I decided to try and contact the consultant who prescribed Colchicine, within the hour she was in touch and advised to stop taking Colchicine immediately and get my bloods checked ASAP and to take her email to the GP as proof of her instruction. My bloods returned huge liver numbers, GGT in particular, usually for me around 16 (max GGT should be is around 33) mine had gone to mid 300's. It took 3 months to get my enzymes back in range. I was not allowed to take any further treatment until this happened. Put on Prednisone which did not agree with me. Then onto Azathioprine for over 4 years until my immune system was just not handling things well and so then prescribed Apremilast (trade name Otezla)

Since the episode with Colchicine I have more gastric issue, although nobody wants to see a link, I did not see a gastroenterologist until after this episode.

My suggestions is see how you get, Colchicine is very helpful drug for this condition, but definitely get liver and kidney function test carried out on a regular basis to make sure everything is as it should be.

Good luck.

[CecilyParsley]

Hi Tiffrose, I had dreadful problems initially with colchicine. Diarrheoa , stomach cramps for days so I stopped and refused to take it again. My new Rheumatologist wanted me to persist so I did. After a few weeks I got used to it and then he increased it. This time I didn’t get diarrheoa but stomach cramps and gut pain. I take both doses at night which helps but I still feel toxic. I have had no blood tests to measure the toxicity or it’s affect on my body. I recently have started seeing a Consultant Anaesthetist specialising in pain control and she expressed real concern about colchicine and it’s toxticity. However although I have less genital ulceration I continue to get mouth ulcers weekly and nasal sores monthly.

Good luck with it xx

[Oathy]

Cant be without them. Been on them since 2000 and if I stop taking them

for a week you can really notice, First its mouth ulcers, then skin issues.

Main problem is they do upset the tummy but this wore off with me after 6 months.

I found the best time to take them just after Lunch.

[loopylyn]

I have been on Colchcine since I was diagnosed over 20 years. One of the best meds in my personal opinion.

[Lubyluboo]

Colchicine has literally changed my life. Like others on here, I had severe diarrhoea when I started them 2 years ago, to the point of not being able to leave the house. I bought a pill splitter and now take 1 and a half tablets every night before bed. I have no side effects at all now and rarely have flare ups. When I do have flare ups they are mild in comparison to before colchicine where I couldn’t do anything at all. I also have regular blood tests for my kidneys and they always check my liver too, not had any issues with this. Everyone reacts to medication differently but it’s about finding the right one and the right dosage that suits you. I hope you find as much relief from it as I have 😊.

[CathLa]

Hi Tiffrose,

I have BD, I'm on Colchicine since 4 years and i didn't have any serious flareups since that time.

I don't take any other meds. Colchicine changed my life.

I hope it will help you too.

[CecilyParsley]

I have been tested for Coelliac and I am negative. The mouth ulcers are weekly but the genital ulcers are about once a month

[CecilyParsley]

Thank you so much. The only thing they found were bleeding ulcers down my oesophagus which they initially thought were thrush but biopsies found that they were not.