Light or laser therapy and minocin.

[Grace]

Hi all. My daughter started therapy with prednisone 5mg/day and minocycline 50mg/day. Switched to minocin brand 100mg/day about a month ago. Pain was so bad in wrist/hand that she has increased to 10 mg of pred in the past few weeks. Still can’t seem to get relief. So searching the forum, I saw quite a few have tried heat/light therapy and it helped. My question is, while taking mino you should avoid sunlight, and after net searching I have found tanning beds and heat lamps should be avoided too. So confused! Is infrared ok? Or has anyone tried this therapy that can tell me what kind of device could be used safely? If she could just get relief in that one spot she could reduce the pred because we know that’s not good. Thanks all.

[lynnie_sydney]

Grace
That increase to 100mg per day is likely counterproductive. Sounds like the increased pain is a classic herx – and where the pain or inflammation is unbearable it is both not doing the patient any good (pain needs to be at tolerable levels) and inflammation will be stopping the ab reaching its target. You don’t mention whether your daughter has RA or another form of inflammatory arthritis. If yes, daily dosing at those levels can be way too much. If it were me, I’d have a week’s washout then re-start the mino at lower levels to begin with and on a pulsed regime on MWF, as per historical protocol.
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Beginning-23522
Any increase (if necessary- and more is not necessarily better with this approach-) I would do slowly and on one day a week. But I would give it a good 6 months before I made any changes.

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)

[richie]

Hi Infrared is definitely not good –the heat or light therapy you see is a process called photopheresis or aphoresis –the person is not subject to UV rays –rather the blood is subject to a process —
Richie

[richie]

Hi Lynnie –Isnt the so-called historical protocol one week of clindymycin IV then the minocycline MWF ????
richie

[lynnie_sydney]

Yes Richie you are right – but clindamycin often used for patients with severe or long-standing disease

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Beginning-23522

Many people have used oral pulsed mino alone with good results (me included) 😀 😀

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)

[Grace]

Thank you richie and lynnie! She has ra and the dr told her it was aggressive because her ccp was over 250. The test didn’t give a number, just greater than. Diagnosed in October 2013. She started minocycline 50 mg every day at the end of December. After one month the pain was still there so her dr and dr S in Iowa both said she should go to 100 mg per day. Isn’t worse but didn’t help so far. Since the pain is mostly in one hand/wrist and one toe we are trying to find a treatment that will be able to get to those specific areas. (So is everyone I’m sure!) hate to have that much pred -10mg, but can’t even use the hand without it 🙁 Soooo we heard about near infrared and heat lamps and tdp mineral lamps and they sounded good for getting to specific spots, but now, because of the light factor, we are rethinking that path :). Boy, this is certainly not easy! Never thought of trying to pulse the meds. Maybe we’ll try that for a few weeks and see if will make a difference. Patience is a virtue that we all need a lot of. Sigh

[lynnie_sydney]

Hi Grace
Doc is probably right. However, don’t be overly worried. My anti-ccp varies between over 500 and over 700 and I’ve been dealing with this for around 25 years……
Detox is something that I would focus on to help the body get rid of toxins from die-off. It certainly sounds like a big herx to me.
Maz posted on various de-tox methods in her Personal History journal. Here’s the link. Scroll down to entry April 11 2012
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638
Also Dr S is of the ‘old school’ and doesn’t really subscribe to dietary methods to help. Later thinking does correlate the two. The whole subject of ‘Leaky Gut’ is very prevalent now in terms of rheumatoid sufferers. I would suggest she try eliminating some major culprits for inflammation: gluten and dairy being 2 prime ones. She might think of going to an ND for some testing in this regard because people vary in what they are sensitive to.
Here’s a link to an excellent article on Leaky Gut by a doc who also uses AP.
http://www.mdheal.org/leakygut.htm

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)

[marypart]

I second Lynnie’s suggestion to go an ND to get some advice– for detox and assisting with the inflammation.

I think my son really benefited from products that included NAC, bromelain, turmeric and quercitin. They all either have anti-inflammatory, antibiotic or antiviral properties. Resvertrol and Monolaurin were also helpful.

But a Naturapathic Doctor could give you better advice.

Ebsom Salt baths also help.

And because my son went to an Integrative Medicine doctor he also did the more unusual detox methods like Liver Flushes and Coffee Enemas. Yes, really, and he was 19 at the time. Shows how much he wanted to get well.

[Karel]

Sorry folks, I am confused. I have started looking myself into buying and building a FAR infrared sauna. They can be costly, but nothing compares to getting my health back. As far as I know they work on infrared and work as detoxer. I thought that minocycline users had to avoid UV, not necessary infrared (heat waves). From Richie’s reply I seem to make up that we should not use infrared, and thus also not use the FAR sauna’s. However my understanding is that various people use a FAR sauna complimentary to autoimmune treatment with AP. Is a FAR sauna a bad idea during minocycline treatment?

[richie]

Hi There are three types of infrared –since FAR only penetrates three inches under the skin -it is fairly benign and only acts as a heat source –the other two types are definitely not indicated –you might look up Mayo Clinic and their position on FAR infared –they are neutral on it but do feel it can give some comfort —
richie

[richie]

Hi I r read where many folks are gluten free –if a person doesnt have celiac why be gluten free and deprive the body of certain proteins –
Richie

[Grace]

Hi folks. Isn’t it funny that everything we try to do seems so complicated? I have been reading about far and near infrared and the site I’m on says near is superior to far. Dr Lawrence Wilson mentions that far saunas emit more harmful electomagnetic fields. Sorry I can’t paste a link, so not techno, but if you google him and far and near saunas there is some info. Thanks to all with regards to treatments to help my daughter with her pain. She is ra, takes krill oil, curcumin, tart cherry juice, B-5, no gluten, no meat, no milk, low cheese, mino 100mg/day, 10 mg pred/day. Was doing vit d until we saw someone post article on this site about D possibly making condition worse. Did take advice about Epsom salt bath. Seemed to help. Didn’t hurt 🙂 trying to get appt w dr, but may start pulsing mwf to see if anything changes. Thanks so much to all. Has anyone heard of K-Laser therapy? Recommended on mercolas website, but again, isn’t that light, so maybe not good with mino.seem to run into roadblocks everywhere!

[richie]

Hi I googled him and am intigued –he calls a near infrared an anti-oxidant nutrient –I have many doubts —however I really dont consider an alternative approach when dealing with rheumatic disease –I got better by utilizing main stream meds and main stream doctors —-Yes I consider minocin to be main stream — minocycline is the most widely prescribed drug for teenagers treating acne —using minocycline to treat rheumatic illnesses is called complementary medicine certainly not alternative –I personally find some alternative approaches to be way out there –thats just my opinion —

richie

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