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Hi;

I have been using Mino for 11 years and it put my SD into complete

remission.To look at me you would never know I was ever sick.In all

these years I have never hear of anyone getting any other AI disease

from it.

I just recently found out that I have long standing Lyme disease

that takes much higher doses of several antibiotics and expect it will

probably take 2 to 3 years to get it controlled so I guess we will find

out if any of them will have such a side effect.One thing for sure is

that I never had a herx when only taking mino at low dose.These other

antibiotics are giving me a herx from hell and bringing back every pain

that I had with the SD but none of the skin or contracture probles.

Lynne

>

>

> Does anyone have an thought on Minocin studies outlined bellow???

>

> Minocycline-induced cutaneous polyarteritis nodosa.

> Tehrani R, Nash-Goelitz A, E, Dahiya M, Eilers D.

>

> Division of Allergy, Rheumatology, and Immunology, Loyola University

> Medical Center, Maywood, Illinois, USA. rtehran@...

> <mailto:rtehran%40lumc.edu>

>

> Abstract

> Minocycline is a tetracycline derivative with multiple clinical uses

> including the treatment of various infections, acne vulgaris, and

> rosacea. Numerous adverse events have been reported ranging from minor

> complaints such as nausea, to serious life-threatening toxicities such

> as acute renal failure, hepatotoxicity, and systemic lupus

> erythematosus. We report the case of an 18-year-old female patient who

> developed minocycline-induced cutaneous polyarteritis nodosa after

> taking minocycline for acne vulgaris. The vasculitis resolved after

> discontinuation of the minocycline without need for corticosteroids.

> This case is the eighth biopsy-confirmed case of minocycline-induced

> polyarteritis nodosa. Although minocycline is an effective medication

> with a wide variety of clinical uses, clinicians must be aware of its

> potential side effects including autoimmune-related disorders such as

> polyarteritis nodosa or systemic lupus erythematosus.

>

> Why minocycline can cause systemic lupus - a hypothesis and

> suggestions for therapeutic interventions based on it.

> van Steensel MA.

>

> Department of Dermatology, University Hospital Maastricht, Maastricht,

> The Netherlands. mvst@... <mailto:mvst%40sder.azm.nl>

>

> Abstract

> The tetracycline antibiotic minocycline is widely used in dermatology,

> but can sometimes cause systemic lupus erythematodes, a serious

> autoimmune disorder. It is not known how it does this. However, recent

> data suggest that minocycline can protect cells from apoptosis by

> inhibition of caspase-dependent and independent cell death pathways.

> Here, it is suggested that this ability of minocycline is responsible

> for the induction of lupus. This idea is based on the recent insight

> that incomplete or failed apoptosis of damaged cells, particularly

> keratinocytes, may be responsible for the development of

> auto-immunity. The protection against apoptosis as conferred by

> minocyclin may be incomplete, with failed apoptosis and development of

> autoimmunity as a result. Experimental confirmation of the theory may

> be obtained by in vitro experiments using induction of apoptosis in

> cell types known to be affected by lupus. Next, mice that are

> sensitive to apoptosis may be used for in vivo expe riments. Novel

> therapeutic approaches to drug-induced lupus may be based on induction

> of apoptosis; DNA-damaging immunosuppressive agents appear

> particularly useful. Such treatments can be tested in

> apoptosis-deficient mice that develop autoimmune disease.

>

> Minocycline is not effective in systemic sclerosis: results of an

> open-label multicenter trial.

> Mayes MD, O'Donnell D, Rothfield NF, Csuka ME.

>

> University of Texas-Houston Health Science Center, Houston, TX 77030,

> USA. Maureen.D.Mayes@... <mailto:Maureen.D.Mayes%40uth.tmc.edu>

>

> Abstract

> OBJECTIVE: To determine if minocycline therapy improved skin thickness

> in early, diffuse systemic sclerosis (SSc) by > or =30%, a level of

> improvement unlikely to occur in the natural history of the disease as

> determined by recent controlled trials. METHODS: Subjects with diffuse

> SSc of < or =5 years' duration were treated with oral minocycline for

> 1 year. The primary outcome measure was the modified Rodnan skin

> thickness score (MRSS). RESULTS: Of 36 subjects initially enrolled, 31

> returned for at least 1 followup visit and were included in the

> analysis (modified intent-to-treat analysis). The group consisted of

> 23 women and 8 men, with a mean age of 51.7 years (range 26-82 years)

> and a mean disease duration of 23.5 months (range 6-60 months). The

> mean MRSS at entry was 22.7 (range 12-43), and at the final visit it

> was 18.6 (range 2-48). There was no statistically significant

> difference in the change in skin scores between the

> minocycline-treated subjects and subje cts previously reported in the

> D-penicillamine (D-Pen) trial. In addition, when adjusted for disease

> duration, a comparison of MRSS in the minocycline trial subjects

> (including all subjects active at each time point) and the previously

> reported D-Pen trial subjects showed no difference and no treatment

> effect. Fourteen subjects did not complete all 12 months of treatment;

> 10 of them withdrew due to disease progression. Disease duration was

> significantly shorter for the noncompleters than for the completers (P

> < 0.03). CONCLUSION: The degree of change in the MRSS was similar to

> that expected in the natural course of this disease. Based on these

> data, minocycline is not an effective therapy for SSc.

>

>

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The following is from the FAQ on www.rheumatic.org regarding possible

exacerbation of lupus using minocycline. The problem appears to be rare at

the low doses used in this protocol. Should such a problem develop,

discontinuing the minocycline is said to reverse the problem. (Correct me

if I'm wrong, but I can't recall a report of a single case of this happening

to anyone in the support group in all the 20 years we've been following

patients. There are 2155 subscribers to this group as of this morning.)

" Exacerbation of systemic lupus erythematosis has been reported in patients

taking minocycline, as has transient lupus-like symptoms. However, while

some physicians report they have not had a problem at the low doses used in

this protocol, other physicians avoid the risk by prescribing erythromycin

for their lupus patients - 333 mg. twice a day Monday, Wednesday and

Friday - taken with food. For those patients with sensitive stomachs,

Ery-Tabs may be prescribed. [As mentioned previously, taking three or four

ounces of a pharmaceutical grade aloe vera shortly after taking the

antibiotic, has been found beneficial for those with sensitive stomachs. ]

Note: A suspected 'causal' association between mycoplasma hominus and lupus

was shown in Cassell GH, Clough W, Septic Arthritis and Bacteremia Due to

Mycoplasma Resistant to Antimicrobial Therapy in a Patient with Systemic

Lupus Erythematosus, Clin Infec Dis, 1992; 15:402-407, and mycoplasma

hominus is known to be resistant to erythromycin, therefore necessitating

the use of an antibiotic in the tetracycline family, with Minocin being the

most effective. What might be happening, instead, is that the so-called

'lupus flare' is really another example of a Herxheimer reaction which is

occurring. Therefore, possibly by reducing the dosage and/or frequency of

Minocin, and by monitoring the situation closely with frequent, repeated lab

testing, these precautionary measures might be sufficient to resolve this

potential problem concerning the use of Minocin in treating lupus patients,

before the situation can get too far out of control. "

As for use of minocycline in scleroderma, there are way too many stories on

the web proving the effectiveness of minocycline for scleroderma. I might

add that for years Maureen Mayes (Wayne State University researcher) has

been against the use of antibiotics for all inflammatory rheumatic

diseases - regardless of the evidence to the contrary.

For those new to this group, not all minocycline (generic) is effective

which is why we recommend using the brand name - Minocin.

Ethel

rheumatic Information on Minocin

> Does anyone have an thought on Minocin studies outlined bellow???

>

> Minocycline-induced cutaneous polyarteritis nodosa.

> Tehrani R, Nash-Goelitz A, E, Dahiya M, Eilers D.

>

> Division of Allergy, Rheumatology, and Immunology, Loyola University

> Medical Center, Maywood, Illinois, USA. rtehran@...

>

> Abstract

> Minocycline is a tetracycline derivative with multiple clinical uses

> including the treatment of various infections, acne vulgaris, and rosacea.

> Numerous adverse events have been reported ranging from minor complaints

> such as nausea, to serious life-threatening toxicities such as acute renal

> failure, hepatotoxicity, and systemic lupus erythematosus. We report the

> case of an 18-year-old female patient who developed minocycline-induced

> cutaneous polyarteritis nodosa after taking minocycline for acne vulgaris.

> The vasculitis resolved after discontinuation of the minocycline without

> need for corticosteroids. This case is the eighth biopsy-confirmed case of

> minocycline-induced polyarteritis nodosa. Although minocycline is an

> effective medication with a wide variety of clinical uses, clinicians must

> be aware of its potential side effects including autoimmune-related

> disorders such as polyarteritis nodosa or systemic lupus erythematosus.

>

> Why minocycline can cause systemic lupus - a hypothesis and suggestions

> for therapeutic interventions based on it.

> van Steensel MA.

>

> Department of Dermatology, University Hospital Maastricht, Maastricht, The

> Netherlands. mvst@...

>

> Abstract

> The tetracycline antibiotic minocycline is widely used in dermatology, but

> can sometimes cause systemic lupus erythematodes, a serious autoimmune

> disorder. It is not known how it does this. However, recent data suggest

> that minocycline can protect cells from apoptosis by inhibition of

> caspase-dependent and independent cell death pathways. Here, it is

> suggested that this ability of minocycline is responsible for the

> induction of lupus. This idea is based on the recent insight that

> incomplete or failed apoptosis of damaged cells, particularly

> keratinocytes, may be responsible for the development of auto-immunity.

> The protection against apoptosis as conferred by minocyclin may be

> incomplete, with failed apoptosis and development of autoimmunity as a

> result. Experimental confirmation of the theory may be obtained by in

> vitro experiments using induction of apoptosis in cell types known to be

> affected by lupus. Next, mice that are sensitive to apoptosis may be used

> for in vivo experiments. Novel therapeutic approaches to drug-induced

> lupus may be based on induction of apoptosis; DNA-damaging

> immunosuppressive agents appear particularly useful. Such treatments can

> be tested in apoptosis-deficient mice that develop autoimmune disease.

>

> Minocycline is not effective in systemic sclerosis: results of an

> open-label multicenter trial.

> Mayes MD, O'Donnell D, Rothfield NF, Csuka ME.

>

> University of Texas-Houston Health Science Center, Houston, TX 77030, USA.

> Maureen.D.Mayes@...

>

> Abstract

> OBJECTIVE: To determine if minocycline therapy improved skin thickness in

> early, diffuse systemic sclerosis (SSc) by > or =30%, a level of

> improvement unlikely to occur in the natural history of the disease as

> determined by recent controlled trials. METHODS: Subjects with diffuse SSc

> of < or =5 years' duration were treated with oral minocycline for 1 year.

> The primary outcome measure was the modified Rodnan skin thickness score

> (MRSS). RESULTS: Of 36 subjects initially enrolled, 31 returned for at

> least 1 followup visit and were included in the analysis (modified

> intent-to-treat analysis). The group consisted of 23 women and 8 men, with

> a mean age of 51.7 years (range 26-82 years) and a mean disease duration

> of 23.5 months (range 6-60 months). The mean MRSS at entry was 22.7 (range

> 12-43), and at the final visit it was 18.6 (range 2-48). There was no

> statistically significant difference in the change in skin scores between

> the minocycline-treated subjects and subjects previously reported in the

> D-penicillamine (D-Pen) trial. In addition, when adjusted for disease

> duration, a comparison of MRSS in the minocycline trial subjects

> (including all subjects active at each time point) and the previously

> reported D-Pen trial subjects showed no difference and no treatment

> effect. Fourteen subjects did not complete all 12 months of treatment; 10

> of them withdrew due to disease progression. Disease duration was

> significantly shorter for the noncompleters than for the completers (P <

> 0.03). CONCLUSION: The degree of change in the MRSS was similar to that

> expected in the natural course of this disease. Based on these data,

> minocycline is not an effective therapy for SSc.

>

>

>

>

>

> ------------------------------------

>

> To unsubscribe, email: rheumatic-unsubscribe@...! Groups

> Links

>

>

>

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Re the issues regarding using minocin, here is my take:

I used minocin for 2 years, low dose...every day 100 mg...twice a day...for the

2 years. For 2 years, ALL of my SD symptoms were alleviated or gone...and I do

mean gone...no joint pain, no epi scleritis, everything just disappeared and it

appeared I tolerated the minocin well.

Then, after about 2 years, I had a small surgery, the Drs used a spinal block

for the anesthesia because I have not ever done well with general anesthetic.

After that surgery, I developed, VERY QUICKLY, shortness of breath, and slid

downhill...after 6 months of telling my DRs here in town, I could not

breathe...my ex rheumy never did once ck my oxygen levels by pulse ox either

BTW...I went in to a pulmonologist (at this point I had not been sleeping and

was gasping for air) I was admitted to the hospital where the CT scan showed

widespread inflammation...my pulse ox was 88. (full time oxygen)

This was deemed either from our pet parrot, hypersensitivity pneumonitis

OR from the minocin, the disease is called Obliterative Bronchiolitis...and it

has been seen in minocin use by acne patients...so....my long time rheumy

immediately pulled me off the minocin. OB is also seen in some rheumatoid

arthritis patients....I looked up cases on the internet.

So, was it a reaction to the minocin? Was it our pet parrot? (yes, we had to

find a new home for him) or was it just a side bonus of having RA as well as SD?

We will never know but DR. Whitman ordered me off the minocin in the event the

minocin caused the OB and deemed it unsafe for me to continue...Was I

disappointed? OH HECK YES I was..all my symptoms came raging back plus some new

ones...I spent the next 3.5 years undergoing a type of chemotherapy for my lung

disease, photopheresis, which fortunately for me...stopped the OB in its'

tracks...but to this day...

Was it the minocin that caused the lung disease OB?

Was it our parrot that caused the OB?

Was it simply RA rearing its' ugly head?

I also need to add that I know of several SD patients, several of them with

diffuse SD that have done and are doing really well on the abx therapy AND have

been on it for approximately 20 odd years...so.....would I take it again if I

knew conclusively that the lung disease would not come back...IN A HEARTBEAT!

Find a good physician who is knowledgeable re the antibiotic therapy...I have

seen Dr. Trentham in Boston, DR. Franco in Riverside, Dr.

Brownstein in MI...and my choice, my long time rheumy, Dr. Hendriks Whitman in

Berkeley Heights, NJ. While they were all very good....Dr. Whitman just " fit me "

the best...I love the fact that he will email responses to my questions, that he

works quite well with my local DRs and he is always on the cutting edge of

anything...Just my opinion...but there it is. Hope this helps.

Debbie in Cincinnati

rheumatic Information on Minocin

> Does anyone have an thought on Minocin studies outlined bellow???

>

> Minocycline-induced cutaneous polyarteritis nodosa.

> Tehrani R, Nash-Goelitz A, E, Dahiya M, Eilers D.

>

> Division of Allergy, Rheumatology, and Immunology, Loyola University

> Medical Center, Maywood, Illinois, USA. rtehran@...

>

> Abstract

> Minocycline is a tetracycline derivative with multiple clinical uses

> including the treatment of various infections, acne vulgaris, and rosacea.

> Numerous adverse events have been reported ranging from minor complaints

> such as nausea, to serious life-threatening toxicities such as acute renal

> failure, hepatotoxicity, and systemic lupus erythematosus. We report the

> case of an 18-year-old female patient who developed minocycline-induced

> cutaneous polyarteritis nodosa after taking minocycline for acne vulgaris.

> The vasculitis resolved after discontinuation of the minocycline without

> need for corticosteroids. This case is the eighth biopsy-confirmed case of

> minocycline-induced polyarteritis nodosa. Although minocycline is an

> effective medication with a wide variety of clinical uses, clinicians must

> be aware of its potential side effects including autoimmune-related

> disorders such as polyarteritis nodosa or systemic lupus erythematosus.

>

> Why minocycline can cause systemic lupus - a hypothesis and suggestions

> for therapeutic interventions based on it.

> van Steensel MA.

>

> Department of Dermatology, University Hospital Maastricht, Maastricht, The

> Netherlands. mvst@...

>

> Abstract

> The tetracycline antibiotic minocycline is widely used in dermatology, but

> can sometimes cause systemic lupus erythematodes, a serious autoimmune

> disorder. It is not known how it does this. However, recent data suggest

> that minocycline can protect cells from apoptosis by inhibition of

> caspase-dependent and independent cell death pathways. Here, it is

> suggested that this ability of minocycline is responsible for the

> induction of lupus. This idea is based on the recent insight that

> incomplete or failed apoptosis of damaged cells, particularly

> keratinocytes, may be responsible for the development of auto-immunity.

> The protection against apoptosis as conferred by minocyclin may be

> incomplete, with failed apoptosis and development of autoimmunity as a

> result. Experimental confirmation of the theory may be obtained by in

> vitro experiments using induction of apoptosis in cell types known to be

> affected by lupus. Next, mice that are sensitive to apoptosis may be used

> for in vivo experiments. Novel therapeutic approaches to drug-induced

> lupus may be based on induction of apoptosis; DNA-damaging

> immunosuppressive agents appear particularly useful. Such treatments can

> be tested in apoptosis-deficient mice that develop autoimmune disease.

>

> Minocycline is not effective in systemic sclerosis: results of an

> open-label multicenter trial.

> Mayes MD, O'Donnell D, Rothfield NF, Csuka ME.

>

> University of Texas-Houston Health Science Center, Houston, TX 77030, USA.

> Maureen.D.Mayes@...

>

> Abstract

> OBJECTIVE: To determine if minocycline therapy improved skin thickness in

> early, diffuse systemic sclerosis (SSc) by > or =30%, a level of

> improvement unlikely to occur in the natural history of the disease as

> determined by recent controlled trials. METHODS: Subjects with diffuse SSc

> of < or =5 years' duration were treated with oral minocycline for 1 year.

> The primary outcome measure was the modified Rodnan skin thickness score

> (MRSS). RESULTS: Of 36 subjects initially enrolled, 31 returned for at

> least 1 followup visit and were included in the analysis (modified

> intent-to-treat analysis). The group consisted of 23 women and 8 men, with

> a mean age of 51.7 years (range 26-82 years) and a mean disease duration

> of 23.5 months (range 6-60 months). The mean MRSS at entry was 22.7 (range

> 12-43), and at the final visit it was 18.6 (range 2-48). There was no

> statistically significant difference in the change in skin scores between

> the minocycline-treated subjects and subjects previously reported in the

> D-penicillamine (D-Pen) trial. In addition, when adjusted for disease

> duration, a comparison of MRSS in the minocycline trial subjects

> (including all subjects active at each time point) and the previously

> reported D-Pen trial subjects showed no difference and no treatment

> effect. Fourteen subjects did not complete all 12 months of treatment; 10

> of them withdrew due to disease progression. Disease duration was

> significantly shorter for the noncompleters than for the completers (P <

> 0.03). CONCLUSION: The degree of change in the MRSS was similar to that

> expected in the natural course of this disease. Based on these data,

> minocycline is not an effective therapy for SSc.

>

>

>

>

>

> ------------------------------------

>

> To unsubscribe, email: rheumatic-unsubscribe@...! Groups

> Links

>

>

>

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Guest guest

hi lynne

what testing did you do to learn you had lyme? what combo of abx and

anti-fungals are you using now? what probiotics do you use and how do

you time them with taking your abx?

thanks

monique

Hi;

I have been using Mino for 11 years and it put my SD into complete

remission.To look at me you would never know I was ever sick.In all

these years I have never hear of anyone getting any other AI disease

from it.

I just recently found out that I have long standing Lyme disease

that takes much higher doses of several antibiotics and expect it will

probably take 2 to 3 years to get it controlled so I guess we will find

out if any of them will have such a side effect.One thing for sure is

that I never had a herx when only taking mino at low dose.These other

antibiotics are giving me a herx from hell and bringing back every pain

that I had with the SD but none of the skin or contracture probles.

Lynne

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