I am wondering if any of my fellow sufferers out there are on colchicine and if they find it helps or not?
I have been on it about 6 weeks now and admit it has reduced my ulcers and skin issues but the pain in my joints is still unbearable and escalating.
Does anyone out there find it helps with the joint pain? should I stick with it? Is there anything else you have tried that helps the joint pain? I am already on gabapentin and amitriptyline as well as what feels like continuous paracetamol and ibuprofen, nothing touches it
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Leacn
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Sorry to hear you’re struggling. I can’t comment on the colchicine too much because it doesn’t agree with me so I avoid taking it. What I understand is that many people find it primarily helpful for the ulcers (I did) but I’m not so sure about how helpful it is with the joint pain, others will be able to comment .
Gabapentin and Amitriptiline are more neuropathic pain meds so I don’t believe they would play too much of a role in helping the joint inflammation (but I’m not a doctor - just my view from having been on them for a trapped nerve!). Ibuprofen is always good to take - and you could perhaps try co-codamol instead of paracetamol for a short while (but would need to check the codeine against your other meds). When I’ve had periods of immense pain I’ve learned to not be brave and take the meds really regularly. Others on here have commented about how helpful an anti-inflammatory diet can be overall, and I’ve also found this to help albeit not a quick solution.
You may need to give everything some time if you’re having a bad flare but you may be need more help and in due course to try the other categories of meds such as steroids or immunosuppressants. However don’t keep suffering, if it is particularly unbearable or you have pain in one joint/area more than others do speak with your GP or rheumatologist so they can check you over.
I hope this helps a little. I’m sure others will give more insight in to the colchicine. Good luck.
thank you .I am relatively new into my diagnosis so colchicine is the first stop. Whilst its nice that some areas have been relieved my day to day is so affected by pain at the moment that I really need to try and get a handle.
I will look into the anti inflammatory diet and also speak to the doctor about pain relief.
Hi Leacn, I too am trying Colchicine, for me it is my third time. I was started on three tablets a day in 2011 and the gut problems meant I never got out of the loo. I tried it again on 1 a day two years ago and again stopped it due to gut issues. This time someone here advised that I take it at night which has worked so much better for me. It has not had any effect on my pain that I am aware of but I take mst for constant pain from Lupus, Arthritis etc and Garbapentin at night for nerve pain in my legs. Make your Consultant aware of your pain and maybe get a referral to the pain clinic. Good luck xx
The best way I have found to control the stomach problems with it is to remove lactose from my diet. I've been lucky that has pretty much stopped the toilet runs on it. I didn't know about trying it at night though.
I will also try and get a referral back to the pain clinic.
Hi, yes it does, I was undergoing physio with a probably diagnosis of behcets & I literally felt like my hip joints were falling apart, it reduced my ulcers immediately and toned down the skin issues. Hi he physio didn’t feel effective with the joints until I took colchicine. If it has sorted those issues then maybe you need the next level of therapy which would be azathioprine on the treatment pathway? All the best
HiI have been on colchicine for some time and like you it has helped the ulcers significantly. Nothing I have been given (I take more than 20 tablets every day) has helped the awful pain and debility caused by my inflamed joints.
Thank you all For now I have had my colchicine increased (I have spent most of this weekend in the bathroom from it ) and my appointment for clinic pulled forwards to discuss.
I really appreciate your help as I can now ask my consultants about it all
Hello! My daughter started her Behcets journey taking colchicine, which helped control her ulcers and skin lesions, but never truly addressed her joint pain. She took nabumetone (an NSAID) to help with joint pain. She could not tolerate the higher level of colchicine needed to control symptoms because of stomach issues, so her rheumatologist put her on Humira a few years ago, and dropped the nabumetone completely and the colchicine down to one .6 pill/day. The Humira has almost completely eliminated her joint pain and arthritis symptoms, and definitely helps control the ulcers and skin lesions as well. When she has delayed taking her Humira dose for various reasons, that is when a flare threatens, so we know that the Humira is working. Hoping you find relief soon.
Glad to hear you got relief! Once my daughter started the Humira, she really didn't need the Nabumetone for arthritis/arthralgia pain anymore so it was one less pill to take. Of course she gets other aches and pains...😩
Hi LeacnI could not tolerate colchicine due to major skin rash and going to bathroom, my GP wanted me to remain on this but I was very uncomfortable so decided to go above his head and contact my consultant directly, she replied within 2 hours telling me to stop taking colchicine immediately and get my blood checked. The results of my liver function showed my ALT and GGT had risen into their hundreds, I had to receive frequent blood tests until my liver function came back to the normal level, which took months, before I was tried on another medication.
So whilst I am not in a position to say about how good it is for ulcers or joint pain, which it clearly is for Behcet's, I would urge you to get blood tests carried out.
P.S. to add more I too was only on colchicine a matter of weeks.
I have had chronic joint pain with my Behcet's. I've also had gastro issues, ulcers, and nerve pain. But, the joint pain has been ongoing. I have not tried colchicine as I am SO hesitant to take meds because I have so many side effects from them.
After I had covid my joint pain got even worse. I don't handle NSAID's well either.
I live in the U.S. and I have access to Naturopath's as well as Chinese medicine to help with my Behcet's.
My Chinese Dr. does Acupuncture, TuiNa massage, Moxibustion & Cupping which have helped me SO, SO much. It has eliminated my joint pain, helped me sleep, relieved my stomach issues and anxiety.
My Naturopath has me on vitamin D, fish oil, vitamin C, zinc, and extra strength curamin. I also receive Myers IV's once-a-month. A Myers’ IV is a formulated mixture of medical-grade nutrients administered through IV. This was pioneered more than 50-years ago by the late Dr. John Myers. The use of an IV drip allows vitamins to bypass the digestive system and enter directly into the bloodstream and organs, ensuring full absorption at the cellular level.
The ingredients of Myers Cocktail:
- B Vitamins: B vitamins have a lot of health benefits. B vitamins in an IV helps increase energy levels. They are excellent for growth and development, nervous system, skin health, properly functioning digestive system, break down body fats, and keep your eyes healthy.
- Vitamin C: This is an essential nutrient for a good functioning immune system. It is good for the treatment of..... cardiovascular diseases, skin, and eye diseases.
- Calcium: Calcium is well known for its role in bone strengthening. It is used for controlling blood pressure, strengthening cardiac muscles, depression, and maintaining ideal body weight.
- Magnesium: Magnesium is necessary for the absorption of calcium. This means it has a role in the strengthening of the bones. It prevents and relieves migraines, reduces anxiety, and muscle cramps.
I try to walk everyday. I don't eat gluten, dairy and I rarely eat sugar. I was hospitalized twice for my gastro issues from Behcet's, so I'm very careful at keeping my diet as clean as I can.
All of these different things help me in dealing with my Behcet's. I try to do everything I can naturally to help my body.
I hope you are able to find some relief for your joint pain soon. I know how much that affects our every day life.
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