First week: have been on 50 mg mino for a week

[redknee]

Diffuse Scleroderma, first week on Teva mino. 50 mg.
Does it help to go slow and stay at this dose for a month then move up to 100 mg per day. Since this is long term protocol does it help to go slower or should I work at getting to the higher dosage quicker? No AP doctor, family doctor has prescribed the mino for me but I am on my own with this therapy.

Diffuse Scleroderma. Plaquenil 300 mg/day. Mino 50 mg/day. Probiotics, fermented foods. no other supplements at this time.

[Lynne G.SD]

Hi Redknee;
I have found through trial and error that 200mg a day is the best just as the Harvard protocol states.Good to see that you are taking plaquinil as it acts much like an antibiotic and anti inflamatory.It is usually well tolarated unless you have vision.problems.Try to up your mino as fast as you can without causing a bad herx.I could not do so in the beginning and it probably took several months.I also found I did not get nausea or head aches if I took it with some food that did not have calcium or iron in it.
At the very beginning I did this alone after reading the SD book . I knew that I could get tetracycline at my local animal food store.Out here in the farming area everyone takes care of their animals as much as possible before calling a vet and many meds are available over the counter for them.I have a few years of human and veterinary medicine so I knew it was the same thing as for humans.This was way back in 1996.I did not have an AP doc until 2004.
Tetra did help,eventually I convinced my family doc to prescribe mino as he saw the results with tetra but I had to do the studying in exchange.Naturally I herxed,then more so with clindamycin and zithromax really kicked my butt.I just sucked it up and persevered as I knew I had no alternative because the traditional meds did not work much and one nearly put me into liver failure.
It took a good 2 years on 200md a day to get my body back and nearly 4 to have full dexterity in my hands although I could make a fist after 18 months or so.
Please try to get get to 200mg as fast as you can,this disease is a killer if we can’t nip it in the bud.Traditional meds will often work but you can’t take them for more than a few years or they will do the same.
FYI,the reason they say to go slow is usually for people with one of the many arthrtis diseases,most just can’t take such a dose at the beginning without having severe pain.

[Maz]

Hi Redknee,

In the original Trentham SD and mino trial, 50mg minocycline was given twice daily (BID) for the first month and then increased to 100mg twice daily thereafter. This is from the old RBF website, but I have a copy of the original study summary that is no longer on pubmed, if you need it.

Excerpt from old RBF website article, entitled:

Minocycline in Early Diffuse Scleroderma SSc – The Next Step

Patients were begun on 50 mg. bid Minocin® taken with water on an empty stomach. The dose was increased to 100 mg. bid after 1 month. This protocol was used to avoid the dizziness and/or headache occasionally encountered when starting on minocycline.

Lynne is right….the goal is to get on and stay on (for life) the full dose of 100mg minocycline twice daily for SD patients. Those with other rheumatic diseases that have lots of measurable inflammation, can’t usually tolerate the higher doses right out of the gate due to excessive herxing that can lead to spiraling hypersensitivity.

[redknee]

Thanks for your reply, I am going to stay with the 50 mg/ day until after christmas. I am finding it hard to maintain my strict diet
at this time of the year. Boxing day I will start at 100 mg/day and then the following week see if I can get up to 100mg/bid.
I have added probiotics and am eating fermented foods 4 hours after taking the mino. Is it a good idea to switch up brands of probiotics?

[lynnie_sydney]

redknee
Not sure if you suffer from any inflammation with your SD. If you do, worth remembering that eating indiscretions can be a trigger for inflammation. (For instance, if I inadvertently eat gluten, my stomach swells within a few hours, then I usually get joint pains following within a couple of days).

Just thought this was worth mentioning as you said you are finding it difficult to stick to your strict diet this time of year. If inflammation is at all in your picture, it could well be certain foods that cause an increase in this rather than any increased dose of mino, if you do that in a similar time frame.

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)

[redknee]

On christmas day I took my first 100 mg of mino. Around 2 am I woke with the most severe headache I have ever had, stiff neck and joints. My daughter thought I should go and have it checked out. Blood test showed my neutrophils count was high, doc said I had a viral infection. (I had the flu shot a few weeks ago, so I don’t know if it is related.) I was wondering if this was a herx reaction or is it too soon. I feel about the same as I did when I was first diagnosed with scleroderma in 2014, every joint is painful, my neck is stiff, my ribs hurt. I am wondering if I should stop the mino until this clears up. I was told to take tylenol and ibuprofen, I did eat some chocolate over Christmas, and I have a suspicion about that.thanks…

[PhilC]

Hi,

The severe headache and other symptoms may be clues that you increased your dose too soon. How do you feel now, and how much minocycline are you currently taking?

Phil

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

[redknee]

I stopped taking mino, I have too much inflammation going on throughout my body….I need to clear out the inflammation…I may need a few prednisone to clear this out.

no mino presently

[redknee]

I think when I went up to 100mg/day it set this flare up. Every joint hurts, massive headaches. I went to the ER and they said to take ibuprofen and tylenol. These helped a little with the headache but now my legs are very painful. I can walk slowly but if I stand in one place the pain is excruciating. I am also getting some back spasms. I stopped the mino and will start again more slowly if this flare ever goes away. I am thinking of going back to the er tomorrow to see if maybe I should be on some low dose prednizone for a few days. I have gone from exercising and swimming everyday to laying flat out on the couch. How long does something like this last…how do you get out of it>>>

[Lynne G.SD]

Hi RedKnee;
I could never have survived without taking pred.One week of 20mg,one of 10mg,one of 5 and then 2mg for several more.I certainly gained weight and got that lovely moon face but it worked.Over the years I had to repeat the process a couple of times.Pred can be very dangerous if you have the Poly 3 antibody because of renal failure

[redknee]

when I was first diagnosed with sclero (or I should say what caused my doctor to refer me to a rheumatologist to find out what was wrong) I had this same flare, and I was prescribed prednisone I think it was for 10 days. I was then tested and that is when I found out I had scleroderma. Thanks Lynne, I am determined to press on, get this cleared up and start again.

[Lynne G.SD]

FYI,I was able to stay and increase the mino while taking the pred as it counter acted any flare or herx

[richie]

HI THe headaches last about a week or two or so -as does the nausea –small price to pay –sorry to see you stopped –perhaps drop back to 50 mg daily –better than nothing –Incidentally if you have SD without overlaps –inflammation is not a factor –it is classified as a collagen vascular disease –I used TRentham 1999–2005 –after his very early work –he decided 200 mg to start obtained faster and better results –he was right with me –keep at it !!!!!!Also you mention diet –unless you have reason for a special diet –he p[laced no restrictions at all.

[redknee]

Back on track, 50mg mino bid along with prednisone 15mg/day which I will drop back to 10mg tomorrow until this flare (or Herx) is over. Thanks for all your help. I didn’t think it would be this tough.

[richie]

HI Arent you on the 4-3-2-1 protocol of prednisone –very effective –

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