I've been reading the board and haven't seen any mention of this combination of antibiotics. I'm a dermatologist and I have found this very effective in many patients with HS and similar problems. A 3 month course tends to bring about a lasting remission and then can be repeated as necessary. One or two patients have not been able to take the full course due to stomach upsets but I would say 95% of people can tolerate it very well. I've probably used it 50-60 times over 6-7 years.
I usually mention it when I give talks to GPs because I know a lot of people are not aware of it.
I am based in South Wales and if anyone would like to come and see me on the NHS feel free to ask your GP for a referral.
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I posted this about 6 months ago. Has anybody tried this combination?
Hi Alun Evans,
What does the Rifampicin and Clindamycin treatments actually do? what sort of results have you seen. Could you tell me how much it costs.
Also, I was thinking of getting laser hair removal in my underarms, because I find that my HS gets better when I remove the hair. I asked my dermatologist about this and he seemed to think it could be a good idea, the only downside he mentioned was the significant potential scaring.
Thanks
Hi Alun,
Yes I have tried it but didn't get very far as i couldn't tolerate it. Kept getting stomach upsets and terrible cramps. Tried about 3 times. I have just had both armpits done and touch wood not too bad since the wounds actually healed but it has only been about 6 weeks. I have tried just about every type of anti biotic and they either don't have any effect or I can't tolerate them. Have an derm doc who does not appear to give up on me so there is still hope. I will have a go with anything that might help.
The best thing I have tried so far is isotretinoin but after about 9 months of treatment I had a really bad outbreak so it got stopped plus the fact I was by then really struggling with the side effects.
Hope this helps
fiona
Hello
In reply to the above questions
Rifampicin and Clindamycin treatment acts as a powerful anti inflammatory combination in HS. I find it works in almost everyone [see original post below]. New evidence is coming out in the form of clinical trials. It is free on the NHS and even privately the drugs are quite cheap.
Laser hair removal may be of some benefit. I wouldn't say it was first line though. The risk of scarring as a result of laser hair removal should be very low if done properly.
Most other antibiotics have relatively little effect. I tend to try and manage stomach cramps etc by reducing the dose or making it intermittent. I've only had one or two patients who really couldn't take it.
Isotretinoin is quite good but not as effective as the above.
It won't be right for everyone but I want to make sure all HS sufferers at least know of the possibility.
Kind regards
Alun Evans
Hi I have just completed a 12 week course of clindamycin and rifampicin and had no remission although did feel some relief between 8 and 10 as symptoms got less severe. Less than three weeks after completing course and I am having a major flare up in a different location from the normal loci although relatively nearby. I hope this information helps someone. Lolo
Hello
Very sorry to hear that R+C didn't work for you. I would move onto infliximab [Remicade] next.
Alun Evans
I am starting a course 10 week course of R & C today, after none of the other antibiotics working. Has anyone managed to complete the course? I am really worried about all the side effects, esp the visible discoloured sweat. I am trying to lose weight as advised and am now worried that this will hinder my exersize at the gym (more than it usually does due to the pain it causes).
Any information on using these medications will be greatfully received.
Kaz
hello Alun nice to know that there are dermatologists reading boards such as this one. hs in itself is bad enough but to go to a doctor and be told you have bad acne why dont you clean yourself properly is beyond words acceptable on these boards.
anyway.......
hopefully work collegues of yours are also reading and taking notes.
the description of hs as a skin disease seems strange. hs is visible on the skin but surely does not start there. isnt it a disease of the sweat glands/hormone related/allergic reaction to dairy/throid related/genetic/pores too large at the base of hair follicles so allowing infection into the skin/the body producing leakage to cleanse its self of toxic material in an abnormal way/liver misfunction?......just a few of the theorys i've read ..... so yeah i can understand that untill more is knowm it is just as well to call it a skin disease but include other experts in the mix just to cover all bases. for example a dermatologist asking for a food intolerance/liver/hormone check.
hs is not caused by lack of hygiene or every homeless person would have hs.
anyway nioce that your here hope we can all continue to learn from each other.
Hi Alun i am willing to give this a go ,as ive tried everthing else but i need someone like yourself or someone that has the knowledge to tell me your thoughts or anyones views, i am 55yrs of age and not in very good health. i suffer from diabeties insulin controlled [excuse the spelling ]and have had h.s. for 20+years ive had a lot of surgery done all over my body, my h.s. is sometimes out of control. what i need to ask you? I have read a few times between the lines[ liver misfunction ] Ihave scrosis of the liver in the advanced stages a side affect from my diabeties, i dont drink tea total can there be any link from [diabeties] liver damage] h.s.] is it worth while researching, can any one give me there thoughts., views on this could there be a connection? [excuse my spelling ] :? THANKYOU, MARGARETANN
Hi Alun. I know you posted over a year ago but still hope people read this. I find it reassuring that dermatologist like yourself are reading forums. I have suffered from HD for 2years, it's safe to say I have been to hell and back with this disease. I have tried every antibiotic known to man and they had very little or no effect, they very very quickly stopped working. I have recently been on the combination treatment Clindamycin and Rifampicin. 300mg of each. This for me has been the Best Treatment Ever!! From having flare up after flare up for the past two years I was giving up on doctors and dermatologist. Since they referred me back to the hospital to see yet another dermatologist who gave me this treatment I haven't looked back since. I was on this treatment for 12weeks and ended the course of tablets on Jan 29th. Now to date... 7th April I have had NOT ONE FLARE UP!! For those who have suffered with this condition for years will know that just them 2 months of not flaring up has done wonders for me. The depression I was experiencing and the pain I was going through month after month. This is the longest I have been without any flare up in my groin area. Not having to worry, if I move this or that way will I flare up? If I do that... Will I flare up? I haven't had to worry about it. Although I know this isn't a cure and has simply put me into remission for X amount of time it's promising to know that I can go back on this treatment after a break obviously cos the tablets are so powerful and can cause last damage if breaks aren't taken in between. For those worrying about side effects... I had non. The only side effect I had was my urine went a kind of red colour and that was only for the first time I urinated each time after taking the tablets.. So it wasn't like it was permanently that colour. My sweat did not turn red and I also had no other side effect. My dermatologist said that they can't and won't stick me on the TNF inhibitors because they cost £13000 per year and simply I am not severe enough. To which I replied "so I have to be on deaths door with a leg dropping off to receive this treatment?" he said "yes". Lol. In his opinion TNF inhibitors aren't all they are cracked up to be, he said the people he has treated it hadn't helped much. He mentioned one person who he has treated with TNF's and that was a 10year old boy with HS, psoriasis and crohns disease. He said his crohns and psoriasis have improved but not his HS. I have psoriasis as well but I can live with that and it isn't severe. It's the HS that's the problem. I am a little nervous as now in April we are approaching the dreaded summer time! To which my condition is worst. Last year during the heat wave I spent most of the time in the most dreadful pain and depression and discomfort. I'm hoping this summer I may be able to spend all my time in work and hopefully after this break I can go back on the tablets and get through the first summer without pain or worrying. Fingers crossed! I am also in the process of applying for funding from the NHS for laser treatment on my groin and for my pilonidal cyst (top of my bum crack). I'm hoping this will help somehow for the HS in my groin. Other forums I have read have actually said it made there HS worse... I'm hoping this isn't the case. If anyone has info on if laser treatment can actually make HS worse after having it is much appreciated. Thanks very much Alun for your original post and I hope many read this and it helps. Like Alun has said... Of all the forums I have read there is very little mention or knowledge of the Clindamycin and Rifampicin treatment. Nearly forgot to mention whilst taking these tablets I WAS and STILL AM using Clindamycin Gel in affected areas (groin and top of bum crack) once a day. I think this helps very much as well. Simply rub in areas only once a day. I think this is key to helping and prevention of HS flare up. I shower every night after work and every morning before work and use hibiscrub wash before applying Clindamycin Gel in the morning. Although this has been a change to my routine in the morning and had to get up earlier... I feel it has helped me. Help this helps someone... Thanks again Alun for your post.
I hope you recommond diet and lifestyle changes in combination to antibiotics. Dermatologists don't usually even entertain the idea that diet can treat HS. I found Diet is the only thing that treats my HS, whilst years of antibiotics did nothing.
Hi, Ive tried that combination and Ive had Roaccutane and surgery, am now looking at biological response modifiers however that isnt available on the NHS. Do you have any other suggestions?
Hi Scott,
Sorry to hear about all you've been through, but keep pushing forward. I too have had the disease for 27 years and just today am starting Clinda/Rifampin combo. I am praying that I can survive the treatment. To answer your question I did the Laser on the groin and armpit area and I can tell 1000000% that there was a huge difference in flare ups. Unfortunately the disease then moved to the buttocks area and the flare ups are unmanageable. It's constant. It is really hard to manage friction and sweat in that area so if you have the laser done I would suggest you do the perennial area also. Once flare ups are contained I am going to go back and do that area. Good luck to you and stay positive.
Hi, i was wondering if you could expand on the specifics of your laser treatment - was it laser hair removal etc and which laser? cheers
Thank you, thank you, thank you for caring about all of us who have lost sooooo much to this disease. The morning routine that everyone takes for granted; to the time lost with our children. To the dedicated spouses and good doctors that care.!!!! No one can understand what these nodules feel like, because it's about sooo much more than that. It saddens me to know that I need to do my own research and that I've had to live with this disease that is over 100 years old. In 100 years there has been very little research. We all have a voice and even though our disease is not cancer it is extremely debilitating. I've had to learn to look past the ignorance that I get from doctors about my food choices or about my cleanliness. FYI world!!!! The routine that we HS sufferers have makes us sterile, not just clean. I wish that there were more doctors like you that cared about the disease the way you do. Thank you again!!!!
Idk Tom. I know they made me wear laser glasses and it was done by a surgeon in his office. He has a daughter with the disease so he is always ahead of the game when it comes to treatment . It wasn't a cheap machine and it took about a year because they did small sections at a time. They would wait 4 weeks in between. I wish I could tell you more, but I will update when I go back after this polinoidal heals. P.S. the nightshade foods group 10000% has worked wonders. Sometimes potato starch sneaks up in cheese and bread but now I read, re-read. For anyone reading this my triggers also come from fruit on top of vegetables. Good luck everyone!!!!!!!
thanks for the info. Your lucky to have found such a good surgeon! where was the treatment may I ask? Ive been following the autoimmune protocol for the last 3 months and im seeing very low results but results nonetheless - for me its not just nightshades. Thanks again!
Hi Tom, I am located in NJ. Re-try the nightshades. I have noticed that potato starch is in everything, from bread to cheese to paprika in mayonnaise. My lesions began to close themselves up and then I deccided to get sloppy and stopped reading and added food back in. In some people it is beer and others complain of sugar. When I started tge diet I started with romaine salad and chicken. I know white onions trigger me but the red ones are fine. It's been about a year and now I just found out strawberries also trigger me, that's how I got the last bought. Starchy vegetables and fruits seem to be my problem. I am not saying it's easy and yes, I've gotten disappointed because of a relapse but I can tell you that the relapse is not anywhere where it used to be. Start slow and add new foods only once a week. Anything labked "Enzyme," be weary about eating it. Also I know when I decrease my water intake I get a relapse. It's allot to take in but it's better than the flare ups and walking around with gauze. ???? Have you tried Kenalog injections!!! They do wonders also. I get them injected right into the area and the nodule subsidies in a few hours. Unfortunately the polinoidal that I just got was after a 5 month remission but I know 100% it was strawberries. That's why I said it's a very long long process. I've had this for 27 years and all I can say is keep moving forward.
I know this was posted over a year ago but I was recently diagnosed with HS but i've had it for 8 years. My GP perscribed me to lymecyline 408mg but I have been hearing a lot about this combonation. Do you think this is more effective than lymecyline. Really desperate for this to get better. Thank you.