Title: Need advice on new medication please
Post by: Celery Peach on June 09, 2003, 08:33:15 AM
Hi there :hi:
Rather amazingly, I got a letter from my Dermo this morning. She wants me to try a new drug combination. She included a document, which I will put here. O I just dont know :( I'm trying to keep off the antis, Im sick of them making me feel ill, and they havnt worked much so far. Not too good last week :( flaring all over, feeling a bit low.
Anyways, here is the document......
HS is a chronic suppurative condition, which is difficult to treat, and results in significant morbidity. Traditionally, topical antiseptics, antibiotics and surgical excision have been used. Acne keloidalis nuchae is a chronic eruption, which can result in localized alopecia and keloid scarring.
Combination treatment with clindamycin 300 mg twice daily and rifampicin 300 mg twice daily for 10 weeks has previously been reported as successful in folliculitis decalvans.
We report our experience with this regimen in seven patients with HS and three patients with acne keloidalis nuchae. A 10 week course of both agents was initiated in all patients, with liver function monitoring at baseline and during therapy. Four patients with HS tolerated the combination, and three of these responded well: one patient has remained clear for 12 months, one reported a 70% improvement and the third patient has not attended for further review following a good initial response.
Three patients with HS were unable to tolerate the combination due to diarrhoea, nausea and vomiting. Clindamycin was discontinued in the two patients who experienced diarrhoea due to the association with Clostridium difficile, and monocycline was substituted. One of these patients subsequently developed raised liver aminotransferases, and rifampican was discontinued.
All three patients with acne keloidalis nuchae responded completely and this has been maintained for up to 26 months without relapse.
We conclude that this treatment appears effective in these chronic and usually difficult to treat conditions and thus represents a significant therapeutic advance.
Any thoughts on it would be appreiciated, I just dont know ??? ???
|
Title: Re:Need advice on new medication please
Post by: missmash on June 09, 2003, 09:08:46 AM
Hi CP
i understand your dilemma.... my dermo wanted me to take a 6 month course of Erythromycin and apply the topical clindomycin twice daily... i declined the oral antis but have used the topical clyndomycin now, for about 3 months, with fairly good results. i only use it when i feel a flare coming on and have managed to to keep the lesions to pea sized lumps which have mostly disappeared without draining (they seems to dry up).
like you, i decided i had had enough of antibiotics (well the swallow em variety). i much prefer to stick to the probiotics and manuka honey ( i eat 4 teaspoons full a day).
and another thought... HS isn`t acne...
Jo
|
Title: Re:Need advice on new medication please
Post by: peterb on June 09, 2003, 10:10:03 AM
| I am not an expert on your condition, but this is a tough one. I would go with Missmash on this, as I know Celery you have been trying the Manuka Honey and getting results. |
Title: Re:Need advice on new medication please
Post by: Celery Peach on June 09, 2003, 10:45:30 AM
o it just gets better >:( just done the search, this was the first thing I found...
Clindamycin therapy has been associated with severe colitis which may end fatally. Therefore, it should be reserved for serious infections where less toxic antimicrobial agents are inappropriate, as described in the Indications Section. It should not be used in patients with nonbacterial infections, such as most upper respiratory tract infections. Studies indicate a toxin(s) produced by Clostridia is one primary cause of antibiotic associated colitis. Cholestyramine and colestipol resins have been shown to bind the toxin in vitro. (See WARNINGS) section. The colitis is usually characterized by severe, persistent diarrhea and severe abdominal cramps and may be associated with the passage of blood and mucus. Endoscopic examination may reveal pseudomembranous colitis. Stool culture for Clostridium difficile and stool assay for C.diflicile toxin may be helpful diagnostically.
-------------------------------------------------------------------------------------------
Then I found this:
Rifampin has been shown to produce liver dysfunction. Fatalities associated with jaundice have occurred in patients with liver disease and in patients taking rifampin with other hepatotoxic agents. Patients with impaired liver function should be given rifampin only in cases of necessity and then with caution and under strict medical supervision. In these patients, careful monitoring of liver function, especially SGPT/ALT and SGOT/AST should be carried out prior to therapy and then every 2 to 4 weeks during therapy. If signs of hepatocellular damage occur, rifampin should be withdrawn.
In some cases, hyperbilirubinemia resulting from competition between rifampin and bilirubin for excretory pathways of the liver at the cell level can occur in the early days of treatment. An isolated report showing a moderate rise in bilirubin and/or transaminase level is not in itself an indication for interrupting treatment; rather, the decision should be made after repeating the tests, noting trends in the levels, and considering them in conjunction with the patient's clinical condition.
Rifampin has enzyme-inducing properties, including induction of delta amino levulinic acid synthetase. Isolated reports have associated porphyria exacerbation with rifampin administration.
The possibility of rapid emergence of resistant meningococci restricts the use of RIFADIN to short-term treatment of the asymptomatic carrier state. RIFADIN is not to be used for the treatment of meningococcal disease.
--------------------------------------------------------------------------------------------
Thanks Jo & Peter for your input, Y'know I hate taking the antis, sometimes I just need a bit of back up, to reasure me Im not mad for refusing these treatments. The derm made me feel really awkward when I tried to refuse the last batch, so I ended up taking the script, the pills are still in the drawer untouched. What the hell they trying to do to me ? Why do we need antibiotics, I dont get it, all my samples came back free of cultures?
I'm feeling better than I have in years, cept for the lumps, taking the probiotics in pill form, my tums getting back to normal. I can cope with the lumps, but when you are just feeling generally lousy because of the Antis it wears you down .The Honey has been the most effective thing I ever used on the lumps. I wish I could swallow it, but I really hate the taste.
I agree with you Jo, I havnt got acne, why do they keep treating me for it, I find this very annoying, where did I put my soapbox :lol:
|
Title: Re:Need advice on new medication please
Post by: peterb on June 09, 2003, 10:50:02 AM
| Isn't it because they also call it Acne Inversa? |
Title: Re:Need advice on new medication please
Post by: Celery Peach on June 09, 2003, 11:02:38 AM
| Yes, that is an old name for it Peter, but I think the Derms take it too literal, we have little in common with Acne patients, their best Acne product ~ Accutane doesnt touch the HS. Thanks for reminding me, I hadnt thought to do a search using the Acne Inversa.... what does inversa mean? |
Title: Re:Need advice on new medication please
Post by: fishs on June 09, 2003, 12:21:59 PM
:hi:
Gidday Celery..
Well I am not going to say much here .. I think you will know pretty much where I am coming from by now ..
No and No and No ..
I had been also wondering about the acne association ? I have been reading quite a lot about H S as i like to keep informed and up to date and this seems to be referred to a lot ..yet I have not seen anything for me in my limited knowledge on this condition to make any real connection.. I am assuming it is in the area of the pores and secretion areas ..?
Celery I am also wondering . Would I be correct in thinking perhaps that derms and docs may be very limited in their knowledge of this condition and also I am wondering if also there has been limited and inadequate attention on the research side of things re any concentrated effort for some reason.. It just puzzles me that most of what I read is usually limited on say any factual evidence or substantial clinical testing or documents.. what I have read appears to me to be more supposition or possible or assumption .. Am I correct here .. I do not see much re indepth or factual with any authority..
Fish |
Title: Re:Need advice on new medication please
Post by: Celery Peach on June 09, 2003, 12:37:48 PM
:hi: Hi Fish,
Yes you are right, there has been very little research done on HS. Apparently HS is classed as an orphan illness, this means there are not many people diagnosed with it, in other words, there isnt enough money to be made by pharmacists to warrent any of them doing the research.
So the derms compare us with Acne patients most of the time, and prescribe Acne meds. :(
As far as I can tell from reading our family's posts here. Even when the research is done, and a treatment is found, there is allways a price to pay....like with the steroid creams.......
Incidently, it is also referred to as 'Jobs disease' from the Bible I think?......its a very old disease.
|
Title: Re:Need advice on new medication please
Post by: Nick on June 09, 2003, 12:58:16 PM
Hi there Cp.
At first glance (the info given by the Derm) it appeared like this could be really beneficial. Yet you have proven just how important it is not to take things at face value and to really research a proble, What a great job you did of it too :up:
If I was you I would go back to the Derm and ask him how he would want to go about measuring or minimising these risks. It sounds like he read the same article and thought it wouldbe good without making independant enquiries - He needs to know about the hole in his research and recommendations before he does the same with an HS sufferer who doesn't have the resources to research as you do.
My personal feelings are that this sounds more like a guinea pig treatment which is not being properly controlled.
I would trust your judgement and treatments over the combination any day.
I bet that you have done more research and sourced better information than they have.
Let''s hope that they pull their fingers out and start proper research into HS soon instead of fobbing you off with Acne cast-off treatments :bighug: |
Title: Re:Need advice on new medication please
Post by: Val on June 09, 2003, 01:27:21 PM
:hi: CP,
Noooooo! if there's any risk in getting colitis don't go there. :hug:
Crohns is a form of colitis and I can promise you that along with the HS you don't need that. It's very draining at it's best (excuse the pun), very painfull and really not nice. You have enough to put up with without that as well.
As for the other problems that you've brought up with your own research. I'm with the other's, too risky.
:hug: |
Title: Re:Need advice on new medication please
Post by: Celery Peach on June 09, 2003, 04:20:21 PM
| Thanks so much guys :bighug: Thats just what I needed, a bit of back up :D |
Title: Re:Need advice on new medication please
Post by: Nick on June 09, 2003, 10:46:29 PM
| Isn't that what we're here for our CP ? ;D :bighug: |
SkinCell Forum | Powered by YaBB SE
© 2001-2003, YaBB SE Dev Team. All Rights Reserved.
|