Home Forums General Discussion Starting a biologic whilst on the AP

This topic contains 6 replies, has 3 voices, and was last updated by  PhilC 4 days, 23 hours ago.

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #461368
    Hesperus
    Participant

    Hello,

    I’ve been a visitor here off and on for several years. I’m 54, F, work from home, in constant pain and in a wheelchair by this point, knee contractures, 23s year after being diagnosed with sero-negative arthropy or psoriatic arthritis minus psoriasis. HLA B27.

    I am currently using no standard rheumy meds, but Mino 100 with antifungals, with the help of a UK AP physician found here via this site.
    I have spoken with him this morning and we may start clindomycin IV before long as there is significant damage and deformity, and new areas of damage,, but we wish to give Mino a fair chance first so are now upping that to 100 x 2 for a few weeks, to see what happens.

    I mentioned to him that my rheumatologist has recently proposed starting a biologic SECUKINUMAB.
    The AP doctor, bless him, is not averse to this idea, in principle, has warned of poss disadvantahes & suggests I ask my rheumatologist about using both.

    Wish me luck with emerging any truly the wiser from that. It’s all too new. Meanwhile, does anyone have experience of doing both concurrently?

    #461378
    PhilC
    Participant

    Hi,

    I am currently using no standard rheumy meds, but Mino 100 with antifungals, with the help of a UK AP physician found here via this site.

    By “Mino 100”, do you mean 100 mg of minocycline per day? How long have you been on minocycline?

    I mentioned to him that my rheumatologist has recently proposed starting a biologic SECUKINUMAB.

    I am not a fan of the long-term use of biologic drugs because they seem to be rather strong immunosuppressants that increase the risk of developing cancer and serious, life-threatening infections. On the other hand, I can see where they would probably be very useful on a short-term basis to help bring serious inflammation under control. However, corticosteroids like prednisone can be (and are) used for the same purpose.

    Phil

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

    #461380
    Maz
    Keymaster

    Hesperus, may I ask when you started your minocycline? You’ve been unwell a long time, so I’m thinking you may have used other medications before starting your AP? If you started AP recently, is it possible you are herxing? In most cases, when someone finds AP and has had long-standing rheumatic disease, there can be quite a bit of reparative work to be done on the gut. Has your AP doc suggested anything to help along these lines (e.g., diet, detox, supps)?

    With regard to your question about possibly starting Secukinumab, this can be used alongside minocycline. Dr. Trentham, who ran the MIRA trials, provided the foundation with the following article upon his retirement. His advice speaks for itself.

    Antibiotic Therapy for Rheumatic Disease: You know where we have been; so where are we now?

    In the second paragraph under the sub-section of his article entitled, “Recent Nuances,” Trentham writes:

    Clearly minocycline can provide adjunctive therapy for RA. In other words, minocycline can be combined with any other available agent. There are no exceptions! Examples include Plaquenil, methotrexate, Arava, anti-TNF compounds like Enbrel & Humira and the new intravenous drug, abetacept (Orencia). Decreased doses of one or both agents may help to avoid gastrointestinal side effects. This regimen usually reflects a desire to obtain additional improvement or to gradually convert to the safer drug, minocycline. Examples include 1. Not having to increase the dose of methotrexate and 2. By increasing the dose of minocycline additional improvement and /or stability may be gained. Perhaps use of two oral drugs might preclude the necessity for an injectable and more expensive drug. Obviously judging the net effect of either drug is difficult or impossible. The same impasse may arise if a clinical or laboratory side effect occurs.

    In some cases, needs-must, and you say you have been unwell for a long time with a good amount of joint pain/damage. Some people do need rheumatic disease medication help while stabilizing on AP and then, as Trentham remarks, they can gradually convert to the safer drug (minocycline). This might be viewed as a kind of grace period, to allow AP to kick in and do its DMARD work. It can be tough tapering off the biologic medications, but it can and has been done by others. Depending on your comfort level and previous use of corticosteroids, Phil is right that you may prefer to use a low dose of prednisone (Brown suggested 5-10mg – a physiologic dose – just to get through the worst of the early herxing or during flares).

    Has your AP doc done any infection testing, Hesperus? If not, perhaps you can ask him to check you for the common offenders, like strep, mycoplasma and the chlamydias. These were usually run by Dr. Brown at the outset and it can help in terms of antibiotic protocol modifications as time goes on. Adding IV clindamycin may help you, but you won’t know till you try. Dr. Brown would usually start with IVs in his long-standing rheumatic patients, the purpose of which was to clear out any chronic, low-grade infections before initiating oral tetracycline therapy.

    If you do decide to start with the biologic (and you probably already know this as a rheumatic veteran), would suggest reading up on it so you can become familiarized with (a) how it works and (b) what to watch for in terms of side-effects. I understand that lung infections are pretty common with this particular biologic medication. So, you may want to begin researching naturopathic things to help prevent chest infections. Buffered liposomal Vitamin C is a common supp around here and, due to its antioxidative and anti-histamine props, helps to prevent both infections and the skin hyperpigmentation that is possible with long-term minocycline use. Other supplements that promote glutathione in the body you may want to research, such as, N-acetylcysteine (a precursor to glutathione), alpha lipoic acide (ALA is anti-oxidative), milk thistle, curcumin, and non-denatured whey protein, can all help with detox and symptom relief from roaming free radicals caused by chronic inflammation. Glutathione is produced naturally in liver and is the body’s natural detoxifying agent, but when chronically ill, it is depleted, so supplementing can help to prevent infections.

    My MIL (now 87) lives in Kent and has both Psoriatic Arthritis (PsA) and Ankylosing Spondylitis (AS)…probably more aptly called Psoriatic Spondylitis. She has been on methotrexate for over 20 years and is now on numerous other medications for pain relief. Sadly, nothing stopped her disease progression and she was afraid to try AP, because she lives alone and was worried about herxing. Perfectly understandable at her age, but sometimes I wonder how she would have fared if she had tried.

    Your AP doc is smart – whatever else you may add to help your rheumatic disease, there is no reason not to continue using minocycline, which is also a valuable rheumatic DMARD and should provide additional relief over time. It may also help to prevent you from getting chest infections.

    Hope something here might help.

    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.

    #461395
    Hesperus
    Participant

    Many thanks. both. Thank you very much indeed. That is very helpful.

    Yes, he has tested for infections. SOME candida, no mycoplasma, some haemolytic strep, bifidus OK, total deficiency of lactobacillus. He’s smart, and kind, and rooting for his patient, and says so many docs now are hostages to ‘best practice’ – and this is, as we have generally found out, running behind or contrary to what is being observed at the coal face.

    PhilC and Maz

    Started AP (again) in August 2017. I tried it once before, going it alone, 5 years ago. Became exhausted, herxing or whatever. Family help me lots but also, I look after them too, and they are used to the problem, don’t really follow what I’m doing or trying to solve it. Eyes glaze when I explain.

    So I tried, and it got too much, bed bound, but then, after 2 years or so with NO MEDS other than vit B, C, oregano and over the counter pain relief plus 1 codeine at bed time, I decided to try again last year, finding an AP practitioner- a doctor previously in NHS practice.

    Yes the current AP involves gut care approaches, with intermittent stool testing for guidance. Fungal readings so-so, not massive, but still, indicated.

    May be herxing slightly just at this point. Disinclined to go out and get necessary blood tests and chest X ray to start the secukinumab.

    I have used biologics before. Stopping was not tapered. It was just stopped.

    Am very aware of the risks, have never, but never, just taken something on anyone’s say so. Steroids, yes, provided a mini-miracle the first injection. I thought I was better, silly me. Lasted 4 days and I scampered about saying watch me! Then watched the knees fill up again

    Risking another biologic, hoping as you say Phil, for a respite sufficient to use for a bit of mobility rehab. Left hand deformed, right hand now being attacked,and at least this biologic is indicated for the HLA B27 factor, which makes sense to me, morre than those predicated on IL 6, as there is psoriasis in my family though no arthritis that I am aware of.

    BTW Reading up re IL 17…the cytokine being targeted by secukinumab I came across ursolic acid, active ingredient of Holy Basil (Tulsi) so bought apot of tablets, not expensive,pending other things.

    Humira previously afforded a good modicum of pain relief at least, for 2 years before the disease figured out how to overpower it. Subsequent biologics were no good at all and swiftly discontinued.

    Doing both may seem illogical, counter-productive, but this illness has an intelligence of its own, I’ve come to feel, and I am not averse to creating a bit of confusion in its nasty little engine-room 🙂

    I’m sad to read about your MIL, Maz. I get that completely, she couldn’t face it, and I’m going downhill for sure if I cannot actively slow or reverse it.

    I have however, got out of the wheelchair before, and experienced unexplained micro remissions. This tells me that these diseases must indeed have an off switch somewhere so the plan is

    AP with gut care
    Mino increased from 100- 200 daily plus Nyastatin. Just increased and feeling r-a-t-h-e-r off colour 🙂
    Perhaps in March Add to this 12 weeks of once weekly clindomycin IV
    AND Secukinumab. If this does not do any good it will be pulled after 6 months (cost) Rheumy said it straightened out the knees of a patient with psoriatic arthritis.

    If I could straighten my knees, I could stand again.

    #461400
    PhilC
    Participant

    Hi,

    Have you ever taken methotrexate, hydroxychloroquine (Plaquenil), leflunomide (Arava), or sulfasalazine?

    Phil

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

    #461497
    Hesperus
    Participant

    Hi Phil

    Yes. Not Srava, but the others, for relatively short times. Over the years I’ve had Sulfasalazine for 6 months, no discernible results, and twice tried Methotrexate, once for 9 months with variable results.

    #461506
    PhilC
    Participant

    Hi,

    Are you taking an NSAID for inflammation and pain?

    Phil

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

Viewing 7 posts - 1 through 7 (of 7 total)

You must be logged in to reply to this topic.