Home Forums General Discussion skin problems and rheumatic illness

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  • #301668
    Tiff
    Participant

    My daughter finished a 6 month round of Accutane in June and was all clear.  She did great on that stuff, but never really experienced the full out dryness we expected, so I kind of wondered if they did not quite hit it hard enough, and now she is relapsing quite a bit after finishing her first semester at college.  I'm sure the excitement and stress were contributing factors.  I'm concerned, so I did a search about Accutane.

    I knew there was a significant relapse rate and she might need another round, but I did not realize how many people end up with joint problems or other health problems like IBS.  They all attribute this to the Accutane.  I don't think it is a side effect of the drug.  I think it correlates to the chronic skin infectiton.  I think this because I have skin problems and joint problems but did not take Accutane ever.  I did have topical Retina-A, however, so there is a slight chance, but I think it represents yet another aspect to rheumatic illness.  The amazing thing to me is that you don't see mention of this correlation anywhere that I can find either in the dermatology area or the rheumatic area!

    It seems to me like any type of chronic infection might lead to AI symptoms whether that be skin infections, UTI, sinus, lung, or gasto-intestinal.  And it just makes sense to me that any of those type of infections could just plain spread in CWD forms.  But the mainstream is completely ignoring it!  So frustrating!

    Now that does not mean that I think acne is AI.  I think it is hormonal, but chronic open sores on the skin can't be good for bacteria load.

    So, my question is, what do we do about her skin?  Maybe nothing is the best answer.  Maybe her immune system has to get it under control without any help or it never will (since so many people do outgrow the problem).  ABX did not work for me in the long run, but maybe if she took them differently (like AP or MP) it might head off disaster.  I can get all into alternative approaches, but how likely is a college student eating in a cafeteria going to be able to deal with strange diets and tons of supplements?  I can tell you, not well!

    Her issues are not as severe as before, but they have gotten worse, so I need to give her some guidance.  We have a doctor appt tomorrow, so I would sure appreciate some feedback or ideas.  I'm not expecting any brilliant insight from them, so I have to have a plan in mind.  Acne is bad enough, but worrying that treating it incorrectly will lead to AI disease is even scarier!  :doh:

    #323961
    tainabell
    Participant

    Hey Tiff,

    I have a couple of suggestions, but most of them might seem a little off-the-wall, so just bear with me. 

    The first is something I'm almost positive you would have tried already, if your daughter was on Accutane.  But my husband had pretty bad acne and we put him on Proactive about five years ago and it has not surfaced since.  He only uses it about once a month now, and the stuff has completely gone into remission.  Again, I would assume you've tried this already, but just thought I'd mention it.

    This is the real off-the-wall one.  I recently bought a series of CDs given by Dr. Andrew Weil for “healing through hypnosis”.  I have chronic hives and  have been trying to cure them and Weil says two of the most curable illnesses by hypnosis and gastrointestinal diseases and skin diseases.  So I'm giving that a shot.  He lays out a very good theory, which is that traditional doctors always denigrate the placebo effet, like “how do we get rid of the placebo effect” when really the placebo effect is just our mind healing us.  The best medicine is no medicine, so why shouldn't we utilize this? 

    The last thing is that I KNOW that there are autoimmune skin conditions.  Chronic urticaria (hives) is one of them, and there are a whole bunch of people out there who have it.  For me, I'm not sure what's the chicken and what's the egg, as my chronic skin condition and my arthritis came on at the same time. 

    Anyways, good luck to your daughter! :roll-laugh:

    #323962
    Tiff
    Participant

    Hi Tainabell,

    Thanks for the thoughts.  Yeah, if I had a nickle for every time someone recommended Proactive…  but honestly, it is a great product.   I would highly recommend it for most people, but, no, it has helped but not solved the problem for her since she started using it after the Accutane.  She is religious about using it, too.  The topicals the doctor gave her are obviously stronger and seem to be helping, but our experience is that the drying agents all just cause her skin to produce even more oil and the cycle starts again even worse.  That is why Accutane works so much better.  It is the only thing that really stops the oil.  I wish they knew more about all this.  It seems like zero progress has been made on this problem for decades.

    As for the hypnosis, my mom mentioned that for helping me with pain.  Finding a hypnotherapist around here is not an option right now, but I am not ruling it out in the future when we move.   All options remain on the table for me!

    My rheumatologist had some kind of AI skin issue he treated with Plaquenil with success.  That is what he wanted to use with me.  He used it for a total of three years doing it for a full year or more after the symptoms were gone.  I am not seeing him anymore right now, but if I were to venture into that area again, I might consider that drug.  However, if it were so great, wouldn't we all be pain free by now?  I'm starting to feel like I can't solve any problems, just manage them.

    #323963
    tainabell
    Participant

    Sorry for the repeat on the proactive thing.  I sympathize – whenever people find out I have hives, they are always like “Have you tried changing your detergent?” like I wouldn' t have thought of that years ago.  😛

    I'm currently on plaquenil (for about 7 months now) and haven't really seen any change from it at all.  My rheumatologist once suggested dapsone as an alternative, but that was before I started AP. 

    Here is the hypnosis tool I am going to start using. 
    http://cdbaby.com/cd/gurgevich37
    It only costs $20, which is too much if its useless, of course.  I haven't really tried it at all yet, just listened to the first CD which explains how it proports to work.  I can't really recommend it until I've tried it, but just thought you'd like the link.

     

    #323964
    Tiff
    Participant

    Thanks!  I'll check out the website.  Sure can't hurt anything!  :roll-laugh:

    Disappointing to hear that plaquenil hasn't helped much for you.  All this seems like trial and error.  It gets tiring!

    #323965
    linda
    Participant

    Hi Tiff,

    One of my children was on accutane for a few months until I saw a story in the news about a teen who was on accutane and committed suicide. It was a difficult decision to take him off of it because it does work so well, his skin was like a baby's bottom. Fortunately, his acne never returned to the severity it was before the accutane.

    I wanted to let you know that minocin is often prescribed for acne, so you would actually be inhibiting any bugs that could create an AI disease now or down the road if you used it.  I know that these abx list joint/muscle pain as side effects, and they can be dangerous especially if you're taking Cipro or Levaquin, but I have not heard that mino is as dangerous in that respect. If she used mino you would have to watch carefully if she developed any AI symptoms to discern whether they are side effects of the mino or a herx reaction. Best wishes for your daughter; it's small comfort I know but we've all been there with the acne:doh:.

    linda

    #323966
    lynnie_sydney
    Participant

    Tiff – why not consider minocin? After all, that's its main use in conventional medicine. You may well be saving her bigger problems down the track. Yes it does seem frustrating that no-one seems to be connecting later joint and other chronic problems down the track to infectious origins, but not surprising. Lynnie

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #323967
    Tiff
    Participant

    Thanks all, for the input!  🙂

    My daugher didn't have any side effects from the Accutane.  I was aware of the warnings about suicide, but the derms are VERY unconvinced that it is a result of the drug.  I tend to agree that other factors are highly involved where depression is concerned.  My daughter was still finishing up homeschooling with me while on the meds, so I kept a very close eye on her moods.  She didn't have any problems with that, but since she is now going to be at college, and this would be a second round, it is a consideration.  There is a lot of additional stress in that atmosphere, of course.

    I should have made it clear that she did try minocycline for a time.  They pretty much require it before they will prescribe Accutane.  It didn't do a thing for her.  This really surprised me because any ABX cleared my skin up over the years until I was about 30, then they became less and less helpful.  I didn't use mino most of that time because it had made me so dizzy and ill when they first gave it to me years ago.  Well, duh, that is such a common reaction I can't imagine they did not expect it and suggest a lower dose, at least at first.  It took over a year on the mino now (which I was given by a derm but was using for RA) to clear up my skin.  We may end up trying it again for her at some point.  Good to have options!

    Thanks again peoples  :)… you are all great!

    #323968
    Maz
    Keymaster

    Hi Tiff,

    This is kind of timely for our family, as our eldest, Emma (22), is just about to start back on Accutane. She's been on doxy since the summer, but it's only controlled the acne to a limited degree. She gets the cystic variety on her face and back, which is painful and scarring and it's always a difficult decision to put her back on Accutane. She's already done two rounds of it when she was about 15 and 17. There is no doubt it's hormonally-related, as it always worsens around her cycle. Her college diet probably doesn't help, either. 🙁 

    Being on an oral contraceptive has helped, as well, to some degree to keep her hormones more balanced, but not completely. So, she's decided it's time for another round of Accutane….a young woman now, it's completely her choice. 

    I know and understand the ambivalent feelings you must be feeling. It's not an easy decision, but my heart breaks that she is such a young, pretty girl and that her face is becoming pock-marked. :crying: She's an old pro with the Accutane now, though, and knows she must be guarded about how it might be affecting her emotionally. I will watch with an eagle-eye, too, when she's home at weekends or pops in during the week.

    I half wonder if acne can also be due to liver congestion…sluggish digestion, poor diet and malnutrition…all aiding the offending bacteria. There are some who swear by liver flushing for acne. I could just imagine the look on Emma's face if I asked her to try that, though! :roll-laugh:  Fluctuations in hormones definitely worsen things, much as they do for us with rheumatic disease. The dip in hormones right before a cycle probably lessens the natural immune suppression provided by hormones and they just have a bit of a field day. Just a Maz theory…but it fits with the schematic of what many RAers experience with hormone fluctuations and imbalances.

    Acne sucks!

    Peace, Maz

    #323969
    Rockin Annie
    Participant

    Hi Tiff,

    My brother had very bad acne as a teenager and went through all kinds of embarrasing situations, my mum tried everything even taking him off tomato sauce as he put it on everything.  Then when his daughter started getting acne, but even worse, my heart went out to her.

    This is only my experience, but after my own daughter started getting acne, my doctor suggested birth control pills and it certainly cleared her face.  I suggested this to my sister in law for my niece.She did end up taking her in the end, as her face had all these ugly red raised pussy marks, it wasn't a pretty sight and so awful for any young girl to have to live with. Anyway the birth control pills cleared it up. just like that.  Today she still has very bad scaring on her face, from years of having acne, before the pills.

    Acne is hormonal, so the birth control regulates the hormones, makes sense, in turn clears the skin.

    Hope this helps a bit, I know how scarey watching your child suffering. :)…………….Annie

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #323970
    Tiff
    Participant

    We went to the doctor (primary care) yesterday.  I mentioned to her that my daughter's monthly cycles are a bit close (say 21-25 days instead of 28) since I know that more frequent cycles mean more hormone fluxuations that definitely make skin issues worse.  She immediately went off track and told my daughter how this is very bad and can cause ovarian cancer if “untreated.”  My poor baby got really frightened by this – very scary when her mom has already dealt with cancer!  Her reaction was predictably to “tune out” most of what the doctor was saying about oral contraceptives and just say no way.  It all didn't go well.

    It would be great if a couple of years (or even less according to the doctor) of BC meds would clear up her skin and better regulate her cycles, but that sounds like it might be too good to be true.

    In the end we decided to continue the topicals and get a referral to a dermatologist where she is going to school so she can get another opinion from them and perhaps do another round of Accutane or try the BC.  My daughter needs time to think through all of it, and fortunately her skin isn't nearly as bad as it was before the Accutane, so I think she can wait as long as she needs.  Like you mentioned about your daughter, Maz, my daughter is getting pretty close to being old enough to decide for herself, so she will have to make the call.

    Also, Maz, I was thinking about the liver issue, too.  I think there is some speculation (outside of mainstream of course) that acne is the result of failure of the liver to clear out excess hormones and toxins.  Like you, I can just imagine the look on my daughter's face if I suggested the liver clease.  However, she is very open to milk thistle, so I may send her back with some of that.

    What other ideas might there be for helping these college ladies to take care of their liver and skin while at school (no drinking of course!! 😛  Thankfully not a problem for my girl!)?  What else?

    #323971
    Pip
    Participant

    Hey Tiff –

    You know, I've always thought post PRA/RA that Accutane had something to do with this.  Another board I post on ran a 'survey' and yet only 2 people posted they were on that stuff.  How good can it be to shrink your oil glands?  The connection to oil/fat/lipids is amazing to me.

    I wonder what a poll on this board would show – how many got AI a decade or two after Accutane???

    Of course, it can't possibly, possibly, ever, really be considered that it might….

    Pip

    #323972
    Maz
    Keymaster

    [user=45]Tiff[/user] wrote:

    What other ideas might there be for helping these college ladies to take care of their liver and skin while at school (no drinking of course!! 😛  Thankfully not a problem for my girl!)?  What else?

    Maybe if we suggest they put the booze on their faces? :roll-laugh: Well, the topical alcohol might do some bug-killing!!!!

    Milk thistle sounds like a really good thing to try, Tiff. Definitely worth a go. The good thing is that you gave your lovely girl the opportunity to look into BC for her acne, the connection of which she may not have made for herself.

    Some of these docs deserve to be struck off for their scary medical proclamations. What a thing to say to a young girl just starting out in life. :headbang:  At that age, the world is your oyster…now she has to live in fear and dread of ovarian cancer??? No wonder you switched off…I would have, too. There are ways of sharing pertinent medical information that doesn't put the fear of God into patients…honestly, I'm not a violent person, but the ol' momma bear instinct in me makes me wanna kick butt! I had a similar thing happen with my youngest, Becky (17 now), when last year her pediatrician put the fear of God into her about not having the HPV vaccine. She totally overode my concerns and when my daughter had her physical and I was excused, I could hear her saying that “Mom's worry too much about this stuff – the HPV vaccine is perfectly safe.” Of course, when I came back in the room, Becky said, “I've decided to have the HPV vaccine, Mum.” I dunno about you, but that's just plain unethical, manipulating a minor like that.

    Ho hum….the beat goes on…hope the milk thistle works, Tiff.

    Peace, Maz

    #323973
    Rockin Annie
    Participant

    I'm with you Maz, I went through the same with my mums doc when she had Bells palsy, I don't know what it is, but whatever the doc says, its like Gods word. What a mess he made of my mum.

    Tiff I hope your daughter acne continues to stay at least at the level it is and gradually gets better……………….Annie

    Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
    2015 changed to doxy 50mgs
    2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
    Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

    #323974
    Tiff
    Participant

    Hi Pip,

    That's the problem… we don't know what it might do, and it should be studied!

    The link or lack of link between the use of Accutane and AI diseases is worth looking at, but I don't think they are doing that.  I did read once somewhere that Accutane was being looked at in treating RA, and I know they experimented with the use of it in thyroid cancer (it did not work).  Obviously the drug has broader implications, but I can't say if they are good or bad.

    My daughter and I could run a small country with our oil production.  It has many negative consequences on cell turn over on my skin and scalp.  How is it affecting me internally?  Perhaps too much oils/lipids are detrimental.  I do know that it makes good food for bacteria on the skin, why not elsewhere?  How many people who took Accutane were already at high risk for AI disease?  Maybe the Accutane fended off the AI disease for a decade instead of causing it.  How can we possibly know?  I chose never to take Accutane.  I did take LOTS of ABX instead, and I still ended up on this board.  Before I found the RBF, I thought the ABX might have destroyed my immune system and caused my PR/RA!  After finding Dr. Brown's work I completely rethought that, and now I think it might have held it off for years instead. 

    What I am trying to figure out is what is less invasive in the long term, a few month on Accutane or being on BC?  Both mess around with pretty major things despite the claims to safety, don't they?  I tend to think that BC is safer, but…  there is another poll we could do.  How many people took BC pills at some point and ended up with AI diseases?  I sure did (for acne).  Bet the numbers would be sky high (excepting you men, of course :P)  Maybe that accounts for why AI disease is higher in women than men??

    It is all way above my head. 

    Maz & Annie, thanks for the input.  It is good to know the variety of experiences on BC.  That HPV vaccine is a good one for a whole other thread, Maz.  I do wonder about it.  Thankfully a bit of stress reduction and change in diet (as well as the slightly drier climate here) has helped some anyway.  If she could just manage it with the topicals, that is what I would like to see.  College life is so distracting, it is hard to keep healthy routines.

    Thanks again, everyone!

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