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  • #464104
    Maz
    Keymaster

    For possible interest: a recent update on drug-induced lupus and rheumatic medications.

    On Feb 19, 2019, Rheumatology News announced the increasing spectrum of rheumatic drugs that can pose a risk to individuals susceptible to drug-induced lupus erythematosis (DILE) and folks here might be surprised to know that many of the common rheumatic meds used today have been closely associated with DILE. So, it’s unfair (not to mention disingenuous) to frighten a patient unnecessarily about one effective DMARD – minocycline – that may cause DILE (1:10000 cases according to one study) without prior warning of all the others that can potentially cause it in those who may be or who are known to be predisposed.

    DILE isn’t easily predicted, but if it is known that if it is diagnosed with one med, patients need to be aware that they may also experience it with other commonly-used rheumatic medications due to their unique genetics/makeup.

    List of medications linked to drug-induced lupus expands

    In line with what the study authors expected, the drugs associated with the highest number of DIL cases were the antitumor necrosis factor agents infliximab, adalimumab, and etanercept, and the drugs associated with the highest disproportional reporting of DIL were procainamide and hydralazine.

    #464106
    Cheryl F
    Keymaster

    Luck~

    Thanks for your kind words! Yes, this was REALLY NOT something I thought I would have to deal with a second time. Of our family if 4, we have scleroderma times 2, RA & auto immune hepatitis times 1 (husband)- the auto immune hepatitis led to liver & kidney transplant in 2017, and me with mild fibromyalgia. Our rheumatologist calls us “mutants” – in the nicest possible way.

    Yes, years ago the rheumy tried scare tactics to get us to stop minocin for Jess. That also happened a few weeks ago with Claire at the dermatologist. He asked “why are you on minocycline?” And she pointed to the scleroderma lesion on the forehead and said “for this.” He said, you should not be taking minocycline, do not stay on it for more than two months.”

    One thing we are blessed with, finding an AP doctor to start Claire on an aggressive combination antibiotic protocol was easy for us this time, I guess there are some perks to having been through this before.

    #464107
    Luck20
    Participant

    Thanks for the comments Maz. I think this is a perfect example of why so many of us have become leery of what we’re told. Its too often not a full, balanced picture.

    Cheryl F. I can’t even imagine what you’ve been through… I’ve been worried lately about the kids catching the flu and having to clean up after them! Thats laughable considering the stress you’ve delt with.

    Whats interesting, is that for someone with a serious autoimmune disease and on immunesuppresants, I no longer get sick. Even before I started on meds, I could sit in a room full of sick people hacking and caughing and not get a thing. I can hug and kiss kids w/colds and not get it. I really don’t understand the immune system well and now I’m really confused about it.

    Sorry to get off topic.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464108
    Cheryl F
    Keymaster

    Luck~

    I couple funny musings I want to share, I hope you see the humor in this as well. You wrote: “that’s laughable considering the stress you’ve been through.” My daughter Claire, the newly DXd scleroderma patient, is in the middle of a doctoral program in clinical psychology. She started this program three weeks before her dad went into the hospital with liver issues, he had his transplant in her second semester.

    So… speaking of stress, you want to know what her dissertation topic is? Well is is basically “The role of stress and stress management on the severity of rheumatoid arthritis.” It was going to be auto immune disease but her advisor thought that was too broad. So, under all this stress, of grad school and her dad’s illness (he was very, very close to passing) what happened? She got an auto immune disease. I personally think she should not have to do a dissertation, she should be able to just stand in front of the committee and say “SEE” this is what extreme stress does to you!

    #464109
    Luck20
    Participant

    Cheryl F~

    Thats a great topic for a paper! Yes, I get the irony of it. I hope someday she ends up doing a paper on something totally friviolous because she is just too busy having fun and slacks until the last minute! Lol.

    Hoping for a positive and less stressful future for you and your family.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464127
    Suzanne
    Participant

    Just curious what your thoughts are on leaky gut. I’m getting A LOT of criticism about it. I’ve done all the diets and none of them made me feel as good as AP therapy hsa. Everyone is so stuck on this leaky gut stuff, i really never know how to answer. How is your daughters gut health? Thank you again for sharing, has really given me lots of hope for my future!

    AP actually seemed to improve her gut health. She doesn’t even take probiotics anymore, just yogurt for lunch most days.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #464128
    Suzanne
    Participant

    Of our family if 4, we have scleroderma times 2, RA & auto immune hepatitis times 1 (husband)- the auto immune hepatitis led to liver & kidney transplant in 2017, and me with mild fibromyalgia. Our rheumatologist calls us “mutants” – in the nicest possible way.

    One thing we are blessed with, finding an AP doctor to start Claire on an aggressive combination antibiotic protocol was easy for us this time, I guess there are some perks to having been through this before.

    Cheryl,

    I had heard about Claire through the grapevine, but knew you had it under control and I know she will be fine! I also recall your husband having some issues, but I don’t think I knew how serious they were! I’m so glad he is okay now.

    Your doctor shouldn’t joke about you being “mutants” – he should want to find the mutation!

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #464130
    Cheryl F
    Keymaster

    Suzanne:

    Claire’s lesion is getting worse. This was WAY easier to deal with in a 15 year old, especially before everyone had the full use of the internet at their fingertips 24/7. To sum it up, Claire is terrified. I think she would prefer to have systemic scleroderma rather than a huge scar/dent in the middle of her forehead. While I have literally talked to hundreds of patients and heard myself say, “it often gets worse before it gets better,” well, patience is not my strength.

    As always, glad to know that your daughter continues to thrive.

    Cheryl

    #464131
    whaleharbor
    Keymaster

    Cheryl, I had no idea what you were going through with Claire. It’s all very frightening, I am just thankful that you and your family have the answer. For what it’s worth, I know your rheumy was trying to make light of things, but it’s not funny and yes stress ABSOLUTELY is at play…at least for me as you and I have talked about before. Hugs to you and your family. You are all in my prayers.

    100 mg Minocycline every other day (Actavis Brand)

    #464132
    Cheryl F
    Keymaster

    Yes, our family is actually very friendly with our rheumy. All four of us have been his patients. I took Claire there years ago, even though she wasn’t ill, I wanted a thorough work up. He is a great guy and Jess and I have had dinner with him a couple times when we attended conferences that he also attended. So, we have more than a doctor patient relationship. He had a major surgery at Stanford last summer and Jess stopped in to see him almost daily. We joked that he only wanted her to see him “socially” NOT “professionally” because if she was seeing him professionally that would mean he had a bad infection. Gordon and I also stopped in to say a quick hello while he was in the hospital. So, the “mutants” comment was really in line with our relationship. And, he said it because we were taking about having us tested, and he said, save your money, I already know you are all mutants. Then the mutants comment just kinda took on a life of its own. Even though he is still not back to work, I emailed him and told him about Claire and he advised us on a treatment protocol and sent along some resent publications related to linear scleroderma. He is a great guy and very caring to our entire family.

    In addition to the combo AP treatment, we are throwing the “book” at this. Several mainstream treatments make sense so we are going to hit it with everything that makes sense.

    #464142
    Suzanne
    Participant

    Suzanne:

    Claire’s lesion is getting worse. This was WAY easier to deal with in a 15 year old, especially before everyone had the full use of the internet at their fingertips 24/7. To sum it up, Claire is terrified. I think she would prefer to have systemic scleroderma rather than a huge scar/dent in the middle of her forehead. While I have literally talked to hundreds of patients and heard myself say, “it often gets worse before it gets better,” well, patience is not my strength.

    As always, glad to know that your daughter continues to thrive.

    Cheryl

    Oh Cheryl, I’m so sorry to hear that but I totally get it. I always thought my daughter was “lucky” to get sick so young, because she had nothing taken from her like the teens who have to abruptly give up a sport they love, etc. I hope Claire can find a way to deal with the stress to help her heal faster. These diseases get a head start before we realize they are there. It does take patience for the treatment to catch up to it.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

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