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  • #307884
    MLTelfer
    Participant

    Hi,

    I have been here a few times regarding my son, 22 YO and diagnosed with PsA 1 1/2 years ago. We started him on AP six months ago. He is taking 200 mg minocyline daily and under the care of an experienced AP doctor. Celebrex keeps his symptoms under control and is very agreeable with his stomach.

    He got into a crunch at school and forgot to take his Celebrex when he went to bed. He woke up the next morning in the worst pain ever. It is obvious the Celebrex is masking the disease as it quickly progresses in severity. Now I am worried that after six months doing AP he is actually headed backwards. Any words of wisdom from anybody on the board? Thank you so much.

    (I was so hoping to come the the board at some stage with a success story, but now I am worried sick).

    #370264
    PhilC
    Participant

    Hi,

    Besides the mino and the Celebrex, is your son taking anything else, like supplements? Has he made any changes to his diet?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #370265
    MLTelfer
    Participant

    Yes. He is on a full regimen of supplements, over $400/month that we get from the doctor. If you like I can list them, but they include probiotics, vitamins, minerals, anti inflammatories etc. He has followed the doctors protocol religiously. The only thing that happened was he got so tied up with a schoolwork deadline he forgot the Celebrex for a day.

    I thought he was making progress: his morning stiffness is almost gone, his stomach settled, his mental outlook is so much better. He woke up with pain in his neck, upper back, right wrist and thumb, inner hips on both sides, left knee and left foot. After he took one Celebrex the pain was back to normal (2 on a scale of 10 for him) within 2 hours.

    I can only conclude the antibiotics have done nothing to slow down the disease. There was no dietary change to point to.

    #370266
    Suzanne
    Participant

    I’m sorry this is happening to your son, but if you follow any other RA boards, most patients would love to have one Celebrex control their pain.

    I think you should discuss this with his doctor, but in the scheme of things, try not to panic too much. Stress can bring on a flare, and if school deadlines are stressing him out enough that he loses his med routine, that could be some of it.

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

    #370267
    marypart
    Participant

    I agree, don’t panic.

    My son got worse before he got better.

    #370268
    kater
    Participant

    I know what it is like to fear for your children and watch them suffer. Very hard. You must try to take care of yourself too. Remember AP is a very slow therapy and 6 months in is a very short time. I agree you should get some reassurance from your doctor
    hugs
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #370269
    Anonymous
    Participant

    @Suzanne wrote:

    I’m sorry this is happening to your son, but if you follow any other RA boards, most patients would love to have one Celebrex control their pain.

    I think you should discuss this with his doctor, but in the scheme of things, try not to panic too much. Stress can bring on a flare, and if school deadlines are stressing him out enough that he loses his med routine, that could be some of it.

    Kellen
    So sorry this is happenning to your son. I am impressed how ever that Cerebrex at least helps reduce his pain to 2. Have just been on Mino and Doxy for about 2 months now and the BID treatment gave me Herxheimer flare to a rating of about 15( 1-10) rating. By reducing the evening dose to 3 days weekily, and continuing with daily minocycline, it appears to be slightly better. At least i would suggest you keep it up as you seek help because unlike the likes of Methotrexate and co, there are no serious side effects. My best wishes.

    #370270
    MLTelfer
    Participant

    Thank you to all who replied. Like I have said, I have literally spent hundreds (and I do mean HUNDREDS) of hours researching this. Meantime I fear that at the end of the day all I have done is a bunch of reading and the disease will have its way with him anyway. But I am possessed and cant stop. I have a couple more books to read and then I am going to dive into researching LDN and LDA. From there, all I can do is fight and never give up. If this was my ultimate purpose in life, so be it. I am not giving up.

    #370271
    PhilC
    Participant

    @MLTelfer wrote:

    There was no dietary change to point to.

    I am not sure what you mean by that. Does that mean that his diet is the same as it was before he developed PsA?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #370272
    Suzanne
    Participant

    @MLTelfer wrote:

    Thank you to all who replied. Like I have said, I have literally spent hundreds (and I do mean HUNDREDS) of hours researching this. Meantime I fear that at the end of the day all I have done is a bunch of reading and the disease will have its way with him anyway. But I am possessed and cant stop. I have a couple more books to read and then I am going to dive into researching LDN and LDA. From there, all I can do is fight and never give up. If this was my ultimate purpose in life, so be it. I am not giving up.

    A mom on another board gives this good advice – she stopped imagining the mountain in front of her would disappear and began to climb it.

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

    #370273
    marypart
    Participant

    I felt the same way. I have three brothers in their 50’s and 60’s and a sister in her 60’s– all with arthritis– they’ve been diagnosed with Ankylosing Spondylitis, or Reactive Arthritis or Crohn’s or some kind of combination.

    I NEVER thought my son would get better. Even as we did the treatments we never thought it would happen… it just seemed impossible that he would get well.’

    But he DID get well with aggressive treatment. He was on hundreds of dollars per month of supplements, too, but they all had their purpose. His rheumatologist just kept testing for infections of all kinds and treated EVERYTHING he showed antibodies for.

    He took antibiotics, antiparasitics, antivirals, and antifungals. They were all prescription. He was on a PICC line with antibiotics twice a day by IV for 4 months.

    The stress was overwhelming while during the first 6 months he was worse and then over time he got better, then worse, then fewer areas of pain, then new areas of pain…. and then finally it was gone.

    Believe, we’ve been there.

    Keep up the good fight. I truly believe treating the underlying infection will work in the end.

    I’m thinking of you.
    Good luck.

    #370274
    MLTelfer
    Participant

    He is on the same diet he was on before PsA. There have been no modifications since onset of the disease.

    #370275
    m.
    Participant

    Chiming in with the others…six months is a very short time + because Celbrex allows him to be nearly pain free does not necessarily mean abx treatment is not working.

    I’ve been on AP for RA since 2008. In that time, the degree of discomfort I feel in my joints comes and goes, often without an obvious explanation. I can count on a “worsening” when I get sick with some sort of winter virus. But, big picture, it’s a small setback.

    In your son’s case, it could be the added stress of a deadline, lack of sleep, poor diet, dehydration, changes in the barometer, fighting off a virus…it’s hard to say.

    I found it helpful in the beginning to keep track of my improving labs. Sometimes lab work improves before symptoms. I went from anemic to barely anemic to not anemic. Then, other blood markers like RDW (?) and antibodies against mycoplasma came in range. For me, those small steps were very encouraging, and helped me to not panic on those seemingly inexplicable “bad joint days”.

    Good luck to you & your boy!

    #370276
    PhilC
    Participant

    Hi,
    @MLTelfer wrote:

    He is on the same diet he was on before PsA. There have been no modifications since onset of the disease.

    Then there is potentially a lot of room for improvement.

    See: https://www.roadback.org/forum/viewtopic.php?p=69779#p69779

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

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