Is anyone using AP with biologics?

[mariemcminn]

I had a shot of Simponi (a biologic) In October 2009 with good results. So good that I didn’t need another one, and in April 2010, I went off all meds for four months, but then flared so bad I went back on Plaquanil only in August 2010. I’ve been on AP since mid-December 2010, and I know it’s too early to tell, but I’m wondering if another shot might slow down the damage that’s going on in my wrist right now while the AP takes over. Any thoughts or experiences along these lines?

[jmphilipp]

Hello – My son is currently taking Humira and I will be starting him AP the end of the month. If we take him off biologics he flares up within a month and Dr. S. in Iowa is recommending that he stay on the biologic for now and adding in the antibiotics. Sorry I don’t know any more yet. Good luck!

[vera]

Hi Marie,

I am using Enbrel with AP. After 5 months off Enbrel, my pain became intolerable. My goal/hope is to get off the drug down the road. I understand AP can take years to work, so temporarily at least, I am doing the biologic with AP. Wish I had good advice for you and hope you get some relief soon. 🙂

Take care,
Lori

[Maz]

@mariemcminn wrote:

I had a shot of Simponi (a biologic) In October 2009 with good results. So good that I didn’t need another one, and in April 2010, I went off all meds for four months, but then flared so bad I went back on Plaquanil only in August 2010. I’ve been on AP since mid-December 2010, and I know it’s too early to tell, but I’m wondering if another shot might slow down the damage that’s going on in my wrist right now while the AP takes over. Any thoughts or experiences along these lines?

Hi Marie,

Others have done this here when the pain has got too bad to function. I think it really has to be a personal choice. 😉

It’s still pretty early days for you and so you’ll likely still be in the early months of herxing. No more fun than flaring and it can be hard to discern the difference. 🙁 This is because flaring will continue when on AP for a while, but over time these should be getting less frequent, less intense and shorter in duration. It’s the longterm trend one has to watch with AP. Flaring that gets worse after the early period of herxing is well over is usually a sign that it’s time to go back to the drawing board. Usually, by about the 6 to 8 month mark one knows if they are improving by labs/symptoms, though it can still be slow-going at this point, depending on severity. Brown oft-repeated that it could take 2 to 5 years for some folk to experience remission…. he was also using a variety of antibiotics and not just the tetras, carefully assessing a person’s pathogen load and titrating to patient tolerance.

Maybe a salient thing to know about AP in this sort of instance, is that the tetracyclines are bacteriostatic….they don’t actually kill bugs and only disable them by interfering with certain enzymatic processes the bugs need to grow and reproduce. When immune function is shut down, then the anti-microbial properties of the tetras are reduced/minimised. There will still be some immune-modulating effects, but one just won’t be killing the bugs as effectively. So, in this regard, it is thought that immune-suppression will slow progress on AP.

http://en.wikipedia.org/wiki/Bacteriostatic

I think one really has to weigh out for one’s self whether it makes sense or not to suppress immune function while on AP and to weigh this against one’s need to function while waiting for AP to kick in. The heartening thing about tetras is that they do have some wonderful joint-protective props, as they block collagenase, which is the enzyme that detroys cartilage. So, either way, there will still be this good effect while on AP, whether one is on a biologic or not.

One other consideration is that normal use of the biologics is to use it regularly and usually it is now prescribed alongside methotrexate. The reason for this is because, over time, they have found that biologics can ‘wear out’ as the body builds antibodies against them. If one wants to keep the biologics as a future option, then occasional use of them might lower their usefulness over time. Of course, this might not be the case in each situation, at all….this is just a preventative measure that I understand rheumatologists employ now to prolong the usefulness of biologics. There is always the option of switching to a different biologic if one wears out, too, but like all the drugs out there, one never knows which drug will work in every case.

I’m just ruminating here, but these are considerations I’d personally take into account if I was making this decision. I can’t actually take biologics, because I have a close relative with MS and that is one of the contraindications for their use, as the biologics have been known to induce both MS-like symptoms and drug-induced lupus (see warnings on package insert). I have also experienced drug-induced lupus, so it’s clearly a big no-no for me, as it’s just the way my body metabolizes certain drugs.

Jason, if you’re reading this and wondering, just to let you know that Dr. S. likely won’t start Aidan on a tetra, because these abx are contraindicated for under-8s…so the above won’t strictly apply in his case, as he’ll likely be put on something broad spectrum, like azithromycin in pediatric suspension. This abx has both bacteriocidal (destroys pathogen cell walls and kills bugs outright) props as well as some bacteriostatic props. 😉 I’ve seen others go to Dr. S. here who are already on conventional meds and it seems that his usual MO is to keep people on these drugs till they stabilize on AP and then they can later wean. Just mentioning this as I didn’t want to cause any unnecessary concern when you’re just taking in all this new info. Just an additional thought, but have you been able to research pediatric probiotics yet? Some of the JRA parents may be able to guide you as to what they’ve discovered works best, as it’s important to protect gut health when on AP (spaced well away from abx doses).

[janiner]

I too take humira and Mino…no way can I ap without shot or I feel like I have been run over by truck. Changing to enbrel as humira is not cutting it anymore. Not sure if its herxing or what issue is exactly. Started ap therapy in January so hoping ill be successful.

[mariemcminn]

Maybe a salient thing to know about AP in this sort of instance, is that the tetracyclines are bacteriostatic….they don’t actually kill bugs and only disable them by interfering with certain enzymatic processes the bugs need to grow and reproduce. When immune function is shut down, then the anti-microbial properties of the tetras are reduced/minimised. There will still be some immune-modulating effects, but one just won’t be killing the bugs as effectively. So, in this regard, it is thought that immune-suppression will slow progress on AP.

http://en.wikipedia.org/wiki/Bacteriostatic

Hi Maz,

Thanks for your lengthy reply. I do not want to go on the biologic, but my husband is convinced that it will help. The information that you provided not only convinces me to avoid the biologic, but also helps me explain it to my husband. He can’t stand to see me suffer, so this is his way of offering a solution. I honestly think I’ve seen improvement since last week; my worst flares occur when I eat something I shouldn’t. I am more diligent now with my diet and it is paying off. I am also encouraged that the abx will help repair the collagen (I think it already has started). I am very optimistic that the AP is working and will continue to work. Thanks for your wisdom, thorough understanding, and easy-to-understand explanation of this very complex topic. The forum is blessed to have you!

Marie

[gordbentley]

mariem, you should look into drinking green tea, and taking oil of oregano. if you havnt all ready. ive been on the green tea for awhile but just added the oregano as it is a natural antiinflam and antimicrobial/bacterial. very cool stuff you should look at!

[lynnie_sydney]

just added the oregano as it is a natural antiinflam and antimicrobial/bacterial.

Gord – was this before you had a “flare”? Oil of Oregano is quite a strong anti-microbial. I took it some years ago – 1 drop in water – and had an immedaite herx response that saw me have to take to my bed within 2 hours. 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)

[Suzanne]

@Maz wrote:

Jason, if you’re reading this and wondering, just to let you know that Dr. S. likely won’t start Aidan on a tetra, because these abx are contraindicated for under-8s…so the above won’t strictly apply in his case, as he’ll likely be put on something broad spectrum, like azithromycin in pediatric suspension.

Maz, as my daughter finally approaches the magic number of 8, we are finding that the goalposts have been moved. I have spoken to several physicians (on all “sides”) who feel that children need to be “older”. When pressed as to what “older” means, we are told 10, 11, 12. Interestingly, the lowest end came from the traditional rheum. I don’t think I’m the only mom in this situation.

She tolerates zith very well and has done great on it, but we had hoped this would be the year to go on an ‘approved’ DMARD and have learned we are still few years off from that.

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

[gordbentley]

no, I just started taking it two days ago, and to be honest ive been feeling pretty good, lingering pain from the herx or flare, but its dying down now that im back on the MWF regime. I think im going to stick to this as everyday was just wayyyyy to painful and it took about 4 days to get the pain back under control after i switched my dosing back. not going down that road again any time soon. mind you my ankles were a wee bit sore this morning but its dying down now which is nice. its weird though i really dont start feeling any pain until about 20 minutes after waking up. i here a lot of people go to sleep with pain and wake up with it. not me, but mind you that has happened to me about 3 times once in the beginning of when this all started and twice whilst on AP. they say the oregano is a natural anti inflammatory as well? ive been taking two drops the last two days. im going to do it again today. sticking strong and heavy on the green tea though. 3 xtra large cups a day!! 🙂 Though im seriously considering cutting out gluten as I have joined membership on dr. Mercolas website and im reviewing his treatment protocol and diet plan. he advised that its probably a good idea though my allergy panel showed no sensitivity to gluten but showed sensitivity to wheat. I still eat rye bread and always have because I am German. white bread and whole grain breads have been cut out and I have been sugar free for about 7 months now minus christmas holidays 😉 i couldnt help myself 😆

i was going to ask mariem what foods have you cut out if any, I noticed that cutting out sugar has boosted my energy levels and cutting back on coffee has helped my lymph nodes significantly as well. some things you may wish to consider 🙂

[Maz]

@Suzanne wrote:

Maz, as my daughter finally approaches the magic number of 8, we are finding that the goalposts have been moved. I have spoken to several physicians (on all “sides”) who feel that children need to be “older”. When pressed as to what “older” means, we are told 10, 11, 12. Interestingly, the lowest end came from the traditional rheum. I don’t think I’m the only mom in this situation.

She tolerates zith very well and has done great on it, but we had hoped this would be the year to go on an ‘approved’ DMARD and have learned we are still few years off from that.

Hi Suzanne,

Thanks for catching this and posting! 🙂

Seems the official FDA stance remains the same…that mino is okay for 8 and overs, though it sounds like physician experience is stating otherwise? I wonder if these physicians are thinking more along the lines of traditional dosing, twice daily or low pulse dosing? Were you able to connect with Dr. S over this? He has pretty extensive experience in treating pediatric cases….would be kind of interesting to know his take on this. It could well be that an experienced AP doc’s stance is very different for JRA as opposed to Scleroderma. I think in the case of scleroderma, I wouldn’t want to wait until my child was over 8…discolored teeth can always be fixed and the risk/benefit in that sort of situation would be much different. If your little one is doing okay on zith, might be best for her to stick with what works, in any case. It’s very interesting that the tetras are plugged by conventional med for their DMARD immune-modulating props only….yet other classes of anti-microbials work just fine in many cases, as for your daughter. Sort of blows the whole “idiopathic” argument. 😆

http://www.drugs.com/pro/minocycline.html

“Pediatric Use
Minocycline is not recommended for the use in children below 8 years of age unless the expected benefits of therapy outweigh the risks. (See WARNINGS.)”

At one time, Dr. T, a conventional rheumy in Boston who also co-authored the MIRA trials, was going to run trials on JRA patients with mino, as he felt strongly that the benefits far outweighed the risks. Would be interesting to know if his opinion has changed now….although he now is no longer treating anyone under 15 in the “halls of academia,” so the question might be moot.

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/255.html

Again…thanks for your input, Suzanne….if you have any specific feedback from the experienced AP docs (Dr. S, Dr. T, Dr. F, Dr. K, etc), please do let us know. Would be kind of interesting to compare their current ‘experiential’ notes.

[Suzanne]

@Maz wrote:

Seems the official FDA stance remains the same…that mino is okay for 8 and overs, though it sounds like physician experience is stating otherwise?

It could well be that an experienced AP doc’s stance is very different for JRA as opposed to Scleroderma. If your little one is doing okay on zith, might be best for her to stick with what works, in any case.

Again…thanks for your input, Suzanne….if you have any specific feedback from the experienced AP docs .

None of the doctors that I spoke with seemed to care what the FDA thought LOL. Believe me, I had my ducks in a row before I broached the subject. On the flip side, mtx is fine even for toddlers, although the FDA has also put age 8 on that one.

Yes, someone might get a different answer for scleroderma. I believe the poster you were addressing has a child with a dx of JRA, which is why I replied.

I even asked the opinion of a dermatologist, knowing that besides mino, he would have knowledge of mtx and biologics from experience treating psoriasis. He felt that she needed to be older for mino, but if things changed for her, even the risks associated with mino for young children would be better than giving her mtx or a biologic. “You can fix her teeth.”

I don’t post who our AP dr. is, but he is experienced and has been consistent that our daughter needs to be older before he will prescribe mino for her. I’ve had too many physicians say 8 is too young to pursue it any further. We’ll wait.

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

[Maz]

@Suzanne wrote:

None of the doctors that I spoke with seemed to care what the FDA thought LOL. Believe me, I had my ducks in a row before I broached the subject. On the flip side, mtx is fine even for toddlers, although the FDA has also put age 8 on that one.

I even asked the opinion of a dermatologist, knowing that besides mino, he would have knowledge of mtx and biologics from experience treating psoriasis. He felt that she needed to be older for mino, but if things changed for her, even the risks associated with mino for young children would be better than giving her mtx or a biologic. “You can fix her teeth.”

Hi Suzanne,

Think you really hit the nail on the head with your quoted comments above.

When it comes down to a choice between mino or a more conventionally-used drug for under 8s with JIA, I think I know where my I’d lay my hat. Thing is, mino is an approved ACR DMARD…azithromycin isn’t and most parents, unless they discover AP, wouldn’t know to look into this option.

It’s such an individual thing…if a child under 8 or even under 12 or 18 is doing fine on azithromycin, then why mix things up with mino before things really need mixing up? Any change in protocol can induce herxing and who needs that if things are stable in the interim? If, on the other hand, zith isn’t working effectively, then if it came to a choice between mino and a different drug, the risk/benefits would be unquestionably in favor of mino IMHO…others might choose differently.

Thanks for sharing your thoughts.

[Suzanne]

@Maz wrote:

It’s such an individual thing…if a child under 8 or even under 12 or 18 is doing fine on azithromycin, then why mix things up with mino before things really need mixing up?

The fantasy is to get an rx for mino from the traditional rheum and no longer have to travel. I got really close until he took a poll! But the results of my poll matched his, so I was prepared for that. He came in with the lowest number, so a girl can still dream.

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

[mariemcminn]

@gordbentley wrote:

i was going to ask mariem what foods have you cut out if any, I noticed that cutting out sugar has boosted my energy levels and cutting back on coffee has helped my lymph nodes significantly as well. some things you may wish to consider 🙂

Hi Gord,

In September when my inflammation was at its all-time high, I decided to address my leaky gut and get tested for food sensitivities. I ordered a test through my Chiropractor/Wellness doctor through ALCAT. When I finally got the results of my ALCAT test, I was shocked at the results! Sensitive to garlic and egg? No way! I got this great color-coded report that listed all of the foods (it tested over 200) with which I had a severe intolerance, moderate intolerance, and mild intolerance–all of which play a part in aggravating my

[Author]

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