Advice

[Hampo81]

Guys I am only a week or so into colchicine and my ulcers have flared up big time, just the usual 6-8 mouth ulcers but at least 8 genital ulcers... they are realy small in a cluster I'm worried they are going to get worse... should I be putting cream of sorts on, I have a telephone Doc appointment next week what meds or creams should I request???

[Kirstymarie04]

Hi

I suffer a lot with ulcers to which become extremely painful. I was prescribed instillagel and lotriderm cream.

Before I was prescribed medication I used to use nappy rash creams which helped a little.

I hope you get some medication that helps

[Hampo81 in reply to Kirstymarie04]

Thanks👍

[cindy2002 in reply to Kirstymarie04]

Kirstymarie04,

May I ask about the first medication you named, I believe it was instilligel? I am not familiar with it. Also, is the second cream you name lotriderm, it sounds like an antifungal cream which we use in the U.S. I am wondering as it would certainly be appropriate for a nappies rash which or other similar fungal infection which we can certainly get. For genital ulcers, they really need to be seen by a practitioner who can determine if a steroid cream or other treatment might be indicated. I recall my first episodes of both oral and genital ulcers. I was unable to talk, open my mouth, swallow. I had pain urinating (I have found that here in the U.S. we have an over-the-counter tablet which acts as a local anesthetic to the urinary tract. I have ulcers in my urethra as well, so when I pee it is painful. This helps so much. I also use a prescription steroid cream which needs to be used sparingly in this area. I believe the original question said they had been prescribed COLCHICINE and that has been very helpful for many with ulcerstions as well as arthritis in some. It has helped me with all of these. I have used Magic Mouthwash, and similar compounded prescription mouthwash which your provider can decide which is best. They usually have prednisilone, antihistamine, anti-fungal and antibiotic. At least that is what it contains in U.S. I have also used a steroid dental paste which can be directly applied to oral ulcers. I got this from my dentist. One thing that I learned early on. Most toothpaste contain Sodium Laurel Sulfate. This ingredient causes or exacerbates oral ulcers . There have been numerous studies on this. When I started using a toothpaste free of sodium laurel sulfate, my ulcers were were reduced in a major way. In the U.S. I use Biotene or ACT for Dry Mouth. Look on the ingredient list. If you want to read articles about the correlation between sodium laurel sulfate and oral or aphthous ulcers, Google it. Behçets is manageable. Not always easy.... knowledge was power for me.

[Kirstymarie04 in reply to cindy2002]

Hi,

Yes Instillgel it's a numbing gel for the genital ulcers. Lotriderm is another cream I was prescribed for these ulcers. I have had years of being seen when the ulcers have appeared now I know as and when they need to be seen which isn't often any more. In terms of my oral ulcers I have prednisone for mouth ulcers and difflam mouthwash. I also take colchicine daily currently which they are looking to change as higher doses flare my tummy up worse. I understand not all medications work for all people. The post was asking about creams etc that can be used my post was merely about what I have been prescribed. I too used SLS free toothpaste and have been following the advise of my various specialist.

I believed from what I understand that people's symptoms and flares differ therefore I can only go on what I have been advised/prescribed.

[ColdNoodleSoup in reply to cindy2002]

Interesting about that ingredient! Which toothpaste do you use?

[Kirstymarie04 in reply to ColdNoodleSoup]

A Sensodyne one. I also use A sensodyne toothbrush as it's smaller than most and a lot softer

[ColdNoodleSoup]

My doctor said it takes about a week for colchicine to start working and many people here said it can take longer, so hang in there! Took me about a week to stop a horrible flare, two weeks to be pain free, and about a month to feel normal. Colchicine has been a saviour for me - fingers crossed all you need is time. Until then, I slept as much as I could and took baths in Epsom salts... Many here use topical steroids and magic mouthwash (steroid mouthwash) which both sound very effective for ulcers. Best of luck! Keep us updated!

[gillianTS]

Hi

I have only recently started colchicine, just coming up to 7 weeks, and I have to say much to my amazement that initially for the first 4 weeks I had a big flare ups of mouth and genital ulcers, both areas experienced smaller ulcers than I have had previously, they were much more short lived and it is only now within the last three weeks am I seeing a reduction in both. My joint pain definitely has got worse and everywhere too. Not sure what dose you have been given, I initially started on 0.5mg for 4 weeks, increased to 1mg 4 weeks later and now yesterday increased to 1.5mg simply because I feel that I have seen a reduction in the ulcers, the inflammation in my joints too but I do feel as though my joints are much more painful not sure why and my Dr now hopes increasing the colchicine again this might help further.

I was also interested if I could stop and start colchicine as and when I experience flare ups and the Dr said she knew/heard of people who did this where others continue to take the drug every day regardless.

I am unable to take anti-inflammatory drugs and co codamol is not helping with the joint pain so at the moment it looks like I am going to have to wait and see if colchicine is going to be my miracle drug.

Good Luck, Gillian