Home Forums General Discussion Hail Mary!

This topic contains 10 replies, has 7 voices, and was last updated by  richie 3 months, 1 week ago.

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  • #461359
    Andrea
    Participant

    Hello Everyone –
    It’s been a long time since I’ve posted on this site. I’ve been doing fabulous with AP for 11 years but the last year I’ve gone steadily down hill. I have not changed anything for this to happen – maybe it’s hormonal? I’m struggling to say the least and frankly I’m at the end of my rope. My Dr doesn’t seem to be giving me as much time and consideration as he used to – I think he’s bored with me – so I’ve resorted to seeing a Rheumy who of course wants to put me on Orencia – which I really don’t want to do but like I said I’m tired of fighting this battle for 11 years. I guess I’m looking for a Hail Mary! I’ve tried what I feel is everything (natural remedies, diet changes, supplements, etc) but of course I’m open to anything that might help. Since, I’ve been away from this site for so long maybe I’m not up-to-date on the latest things. I would love to know what you recommend to try next. Help please!

    RA since 2007, Hypothyroidism since 1992, High Blood Pressure since 2017
    Current Meds: Minocin 200mg (T, Th & Sat), Axithromycin 250mg (W only), Plaquenil 400mg, Armour Thyroid 2 1/2 gr, Prednisone 5 mg, Low Dose Naltrexone 4.5mg
    Current Supplements: Mega Vitamin, L-5_MTHF 1000mcg, Strontium Citrate, Vitamin D 2000IU, N-Acetyl-Cysteine, extra iron,
    Supportive Measures: IV push Myer's Cocktails, Periodic IV Chlyndamycin, No corn, No dairy, No sugar

    #461360
    Maz
    Keymaster

    Hi Andrea,

    Sorry to hear you’re down in the dumps, but welcome back.

    I’m looking at an NDT chart that recommends 3-5 grains as being the optimal average dose for hypothyroidism, but have you considered talking with the Stop the Thyroid Madness group on Facebook? They seem to have a lot of info on optimal NDT dosing. Have you had any recent thyroid labs? If so, which ones does your doc typically test? Hypo and hyperthyroidism can mimic RA pain and so, for rheumatics, it’s essential you get labs in ideal range (not just “in range”). Thyroid can also control blood pressure, so if you’ve gone a bit hypo, this might be related, too. Although I haven’t tried NDT, I understand it can artificially suppress TSH which is why STTM recommends getting thyroid bloodwork before taking NDT on the day of the blood draw. Apparently docs become concerned when TSH looks too suppressed (hyper) while on NDT, so underdosing can inadvertently occur. Not saying this is happening in your case, but just sharing what I’ve read on the STTM site in case it can provide a talking point with your doc.

    Have you remained on the same mino dose for 11 years? If so, it might not be optimal for you now, so working with your doc to tweak the dose up gradually might help. I would get tested for drug-induced lupus, though, just to exclude that potential first.

    Looks like you’re doing an elimination diet….have you tried excluding all gluten, too, for a good 4 months?

    Just a few ideas…hopefully others will chime in for you!

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #461362
    lynnie_sydney
    Moderator

    Hi andhol
    One more question for you. Looks like you are/were taking brand Minocin. If that is the case, did you change to a generic in the last 12 months?

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #461363
    Andrea
    Participant

    Maz – my TSH is .02, T4 is 1.2 and T3 is 4.1 As far as the Minocin is concerned what is the suggested amount to up it to from 200 mg?
    I did go gluten Free for a long time. Was tested for Lupus just recently and came back negative.
    Lynnie – I have not changed my Minocin to generic and have been receiving it from the same Canadian Pharmacy for quite a while now – no change in the appearance of the meds either (just in case they tried to switch without me knowing)
    I have an app’t with my Dr (the one who has become bored with me – my words, not his) on Monday to discuss a possible last ditch efforts. I’m suggesting another round of the IV Chlyndamycin, another round of the IV Myers Cocktails and possibly a change in my Minocin. I find that he is very receptive to things I suggest but doesn’t really suggest much on his own any more. Any thoughts on those ideas? and anything else that may work?
    The other question I have is if I should try the Orencia (which I really don’t want to do) what are the chances of me getting off of it and returning to AP? Your help and suggestions are greatly appreciated!
    Looking at your tag lines I noticed that I stopped my Progesterone as I thought it was making things worse – wondering if I should try that again.
    Sigh!

    RA since 2007, Hypothyroidism since 1992, High Blood Pressure since 2017
    Current Meds: Minocin 200mg (T, Th & Sat), Axithromycin 250mg (W only), Plaquenil 400mg, Armour Thyroid 2 1/2 gr, Prednisone 5 mg, Low Dose Naltrexone 4.5mg
    Current Supplements: Mega Vitamin, L-5_MTHF 1000mcg, Strontium Citrate, Vitamin D 2000IU, N-Acetyl-Cysteine, extra iron,
    Supportive Measures: IV push Myer's Cocktails, Periodic IV Chlyndamycin, No corn, No dairy, No sugar

    #461366
    lynnie_sydney
    Moderator

    Looking at your tag lines I noticed that I stopped my Progesterone as I thought it was making things worse – wondering if I should try that again.

    Wonder why you thought that was making things worse? Lack of any of the sex hormones (especially progesterone) would be more likely to have an adverse affect. It may also be worth addressing that whole area. When I wasn’t doing very well a couple of years back, one of the things I decided to do was have a Functional Medicine doc who focuses on women’s health take a look at the whole picture of my sex hormones. (She increased my progesterone and added in the DHEA and estradiol).

    You also mentioned you were Gluten Free for a long time. Wonder if that might also be a culprit in your gradual worsening over the last year? I find that, if I inadvertently ingest any gluten (it will occasionally happen), in addition to gut issues ensuing within a couple of hours, my joints play up for the next few days.

    Those 2 things you’ve changed could well be what’s making the difference.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #461367
    kristie
    Participant

    I was on mino 100mg daily for 5 years when I started having a relapse in symptoms. I tried raising it to BID but no relief. I remembered Dr Brown writing that your body gets used to the same medication over time so I switched to doxycycline and did great. Maybe something to discuss with your Dr.

    #461369
    aboyer
    Participant

    Kristie, how much doxycycline do you take?

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg daily, plaquenil 100 mg daily, and just started on minocycline 50 mg m, w, f

    Supplements: fish oil, vitamin b12, folate, b6, iron, NAC, selenium, zinc, vitamin c, and biotin

    #461377
    PhilC
    Participant

    Hi,

    It’s been a long time since I’ve posted on this site. I’ve been doing fabulous with AP for 11 years but the last year I’ve gone steadily down hill. I have not changed anything for this to happen – maybe it’s hormonal?

    Here are my thoughts. The first thought that came to mind is the bacteria you are infected with have developed some antibiotic resistance because you have been on pulsed dosing for so long. Either that, or you have acquired a new infection, and the new microbes are resistant to minocycline (and maybe azithromycin as well).

    Another possibility is that you have developed some type of minocycline-induced autoimmunity (e.g., DILE) or an intolerance or sensitivity to minocycline. If this is the case, then switching to doxycyline may be helpful.

    Phil

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

    #461379
    Maz
    Keymaster

    Maz – my TSH is .02, T4 is 1.2 and T3 is 4.1 As far as the Minocin is concerned what is the suggested amount to up it to from 200 mg? I did go gluten Free for a long time. Was tested for Lupus just recently and came back negative.

    Hi Andrea,

    Well, your thyroid labs look pretty good in terms of NDT use, but to verify would need the actual lab reference ranges with units of measurement to be sure, and also to know if these were Free T3 and Free T4 (not the Total values). It’s crazy, but different labs use different reference ranges and units of measurement.

    Were you tested for real lupus or drug-induced lupus?

    Drug-induced lupus work-up.

    In the drug-induced variety, anti-histone ABs are usually elevated. There are other labs that can be indicative of DILE if previously negative, too (e.g., ANA with homogenous pattern and single-stranded anti-DNA). Drug-induced lupus can occur with a number of medications, including minocycline, so it’s worth checking (if only real lupus was checked).

    Switching or rotating one’s AP at, or around, the 5-year mark is not uncommon, even if only for a brief half-year. Some will rotate to doxy (usually a higher dose is needed that was used for minocycline), as was mentioned already above by a few folk, but dosing schedules vary. E.g. a typical rotation protocol might be: 100mg doxy once or twice daily, plus 500mg biaxin, pulsed in every other day.

    Wintertime is also when most people’s Vit D plummets, if not living in warm, sunny climes. It is amazing how optimizing Vit D can be for pain levels.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #461495
    Andrea
    Participant

    Hello Everyone
    An update – my AP Dr. gave me Biaxin to take everyday for two weeks, some progesterone and estrogen patches at my last visit. I’m starting to feel a bit better UNITIL last week when I had 2 tendons rupture in my fingers for the second time in a year. So off to surgery I go again to fix them and this time they are fusing the wrist. Yes, they believe this to be RA related. Apparently it’s starting to attack the soft tissue – JOY! The recover is 3-4 months and frankly I’m not looking forward to it. I’m filling out disability retirement paperwork and hope that it will take effect before summer (I work in a school). Anyway, I wanted to give you an update.

    RA since 2007, Hypothyroidism since 1992, High Blood Pressure since 2017
    Current Meds: Minocin 200mg (T, Th & Sat), Axithromycin 250mg (W only), Plaquenil 400mg, Armour Thyroid 2 1/2 gr, Prednisone 5 mg, Low Dose Naltrexone 4.5mg
    Current Supplements: Mega Vitamin, L-5_MTHF 1000mcg, Strontium Citrate, Vitamin D 2000IU, N-Acetyl-Cysteine, extra iron,
    Supportive Measures: IV push Myer's Cocktails, Periodic IV Chlyndamycin, No corn, No dairy, No sugar

    #461496
    richie
    Participant

    Hi You are also entitled to short term disability through your schools compensation plan -suggest you speak to someone at your school to find out about this entitlement -It has nothing to do with social security disability -completely different

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