Plaquenil

[Guest guest]

Dear :

The Plaquenil did not work in the least for me. I have attached a link to the

pharmacy info page I use so you can check out all his suggestions. Having your

throat swell shut is an anaphylactic reaction and a real never-again sign!

How bad is the arthritis portion? Have you considered the new Arava? Check

our archives for a full discussion of that new drug. I for one am much

happier with

it than I was with Metho. Good Luck,

<A HREF= " /viewarchive.cgi?listname= " >

Archives - PA list a...</A>

<A HREF= " http://www.intelihealth.com/IH/ihtIH?t=8124 & r=WSAOL002 " >US

Pharmacopoeia</A> <A HREF= " http://arthritis.miningco.com/msub10.htm " >

Psoriatic Arthritis - Arthritis Net Links</A>

[Guest guest]

Hi Sharon,

I can't answer your question about taking Plaquenil alone...I am taking

it with Biaxin...but my LLMD did say that it acts as an

anti-inflammatory. Maybe your LLMD wants to try to trigger your immune

system into fighting the spirochetes...and the Plaquenil will relieve

some of the inflammation...

I'm sorry to hear about Mike's troubles at college. While I understand

why you want to encourage him to continue, I think that if it becomes

too frustrating for him, you might want to consider his taking a break

until he feels better. My daughter, who is very bright, struggled

through High School because of learning disabilities due to LD. She is

not attending college now, but is attending a techinical school which

she loves.... Hang in there. We're all thinking about you.... Joan LI

NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

Hi, just got back from my LLMD and this is what she has decided.

After being on abx on and off for years (10) and not really ever getting up the

graph to well, she wants to stop the abx. Her feeling is that at this point my

immune system is battling itself and my body and that is causing the problems.

She has put me on plaquenil alone for 2 months. I know people use it with

zithro and biaxin but I haven't heard of it used alone except as an antimalaria

drug. I am confused and didn't start to have questions there with her, but do

now.

What do you think this is for and how will it affect me? I have a friend with

lupus who takes it and I wonder if that is what she is working on, she said

something about killing off the part of the immune systme that has gone haywire.

Any input would be appreciated.

Also, those of you who know of Mike, he is really getting depressed and

frustrated with the learning disability. He told me tonight when I went to

visit him at college that maybe he ought to reassess his life and find a career

that doesn't need an education. Life is so hard for him, losing his ability to

read and being so overwhelmingly bright otherwise is so frustrating. I am

encouraging him to stick it out and see what the LDS has to say on 11//3. Keep

him in your prayers.

While at PT with Dan today, his knees are swollen and they are thinking of

taking some fluid, a guy was there in a wheelchair, he was around 25. After he

left I asked what had happened and they said he had been in a three wheeler

accident 8 years ago. he will never get better they say, he can't even talk.

So, as I have said before, it is all relative. But when it is your life and

your future, it doesn't seem to matter. Mike had such a bright future and this

d--- disease has shaken it to bits. I am very tired of this battle tonight.

Thanks,

Sharon - Hunterdon County, NJ

Chronic Lyme since 1989

Son - Mike,20, neurolyme since 1995 @ college, sees Fallon

Daughter - Christie,19,chronic lyme since 1996 @ college

Son - Dan,15, lyme (1998) 2nd remission

[Guest guest]

In a message dated 10/20/99 12:27:20 AM, ferraroa@... writes:

<<Sorry to ask, maybe a dumb question, but isn't Plaquenil an anti-malarial

medicine?>>

Hi

Yes it is an anti malaria drug that has also proved to be helpful to those

with rheumatoid arthritis and lupus. My LLMD says that for Lyme patients it

works

to help the cells become more alkaline allowing Biaxin and Zithromax greater

cell penetration... I understand that Dr. Donta in Boston also uses this

combo...

Hope that helps

Jane

[Guest guest]

Sorry to ask, maybe a dumb question, but isn't Plaquenil an anti-malarial

medicine?

Vicki

Re: [ ] plaquenil

Hi Sharon,

I can't answer your question about taking Plaquenil alone...I am taking

it with Biaxin...but my LLMD did say that it acts as an

anti-inflammatory. Maybe your LLMD wants to try to trigger your immune

system into fighting the spirochetes...and the Plaquenil will relieve

some of the inflammation...

I'm sorry to hear about Mike's troubles at college. While I understand

why you want to encourage him to continue, I think that if it becomes

too frustrating for him, you might want to consider his taking a break

until he feels better. My daughter, who is very bright, struggled

through High School because of learning disabilities due to LD. She is

not attending college now, but is attending a techinical school which

she loves.... Hang in there. We're all thinking about you.... Joan LI

NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

[Guest guest]

Thanks Jane,that helps a lot.

Vicki

Re: [Lyme-aid] plaquenil

>From: JVSPL@...

>

>

>In a message dated 10/20/99 12:27:20 AM, ferraroa@... writes:

>

><<Sorry to ask, maybe a dumb question, but isn't Plaquenil an anti-malarial

>

>medicine?>>

>

>Hi

>Yes it is an anti malaria drug that has also proved to be helpful to those

>with rheumatoid arthritis and lupus. My LLMD says that for Lyme patients

it

>works

>to help the cells become more alkaline allowing Biaxin and Zithromax

greater

>cell penetration... I understand that Dr. Donta in Boston also uses this

>combo...

>Hope that helps

>Jane

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

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[Guest guest]

In a message dated 10/19/1999 7:27:21 PM Eastern Daylight Time,

ferraroa@... writes:

<< Sorry to ask, maybe a dumb question, but isn't Plaquenil an anti-malarial

medicine? >>

Vicki: Yes it is and is changes the PH balance within our cells which in

turn allows an antiobiotic (usually Biaxin) to work more efficiently in the

more friendly environment. That combo brought me to my 17th. month totally

without symptoms after trying various other antiobiotics since 1993. Mona

[Guest guest]

Thanks Mona!

Re: [ ] plaquenil

>From: WISHXXX@...

>

>In a message dated 10/19/1999 7:27:21 PM Eastern Daylight Time,

>ferraroa@... writes:

>

><< Sorry to ask, maybe a dumb question, but isn't Plaquenil an

anti-malarial

> medicine? >>

>

>Vicki: Yes it is and is changes the PH balance within our cells which in

>turn allows an antiobiotic (usually Biaxin) to work more efficiently in the

>more friendly environment. That combo brought me to my 17th. month totally

>without symptoms after trying various other antiobiotics since 1993. Mona

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

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[Guest guest]

In a message dated 12/17/99 2:38:43 AM, lyme-aidonelist writes:

<<Can anyone here say in a line or two what is the difference between Flagyl

and Plaquinil? If not I'll look at my resource material again and try to

make sense out of it all.>>

Hi Barb

My name is " Jane " not " Jan " . (<:

Plaquenil is NOT a true antibiotic... It is used as an anti maleria drug,

and now it is also used in the treatment of lupus and rheumatoid arthritis.

If you have joint pain, it may really be helpful.

I copied the below info for you.

Jane

The antimalarial drugs were first developed to fight the infection

malaria. In the early 1950’s, these medications also were discovered to

decrease the inflammation of rheumatoid arthritis. Since then they have

been used to treat other types of arthritis including psoriatic

arthritis and systemic lupus erythematosus. The antimalarial drugs

decrease joint pain and inflammation in about 60% of persons with

rheumatoid arthritis. There is debate as to whether they prevent joint

damage.

 

The most commonly prescribed antimalarial drug in the United States is

hydroxychloroquine. The brand name of hydroxychloroquine is

Plaquenil. Another antimalarial drug, chloroquine, is sold under the

brand name Aralen. Aralen was more widely used in the past for

rheumatoid arthritis but because it may be more likely to cause

side-effects than Plaquenil, Aralen is prescribed less often.

 

Most rheumatologists consider Plaquenil to be one of the safer but

“weaker” second line drugs. Plaquenil is a pill that is usually taken

once or twice per day. The usual dose for adults is 400 milligrams (2

pills) per day or less. Improvement due to Plaquenil is not expected

until after 6-8 weeks, and Plaquenil is not considered ineffective until

it has been taken for at least 6 months. Like gold, Plaquenil affects

the production of many inflammatory proteins and enzymes. It also

influences the interaction of “antigens” with immune cells.

About 10-20% of people who start Plaquenil stop it because of

side-effects. Twenty to thirty percent of people starting Plaquenil

experience abdominal symptoms (nausea, bloating or cramping abdominal

pain). Most of the time this is mild. Approximately 5% of people

developing these abdominal symptoms have to stop the medication. 

 

Skin changes occur in 3-10% of people taking Plaquenil. This may take

the form of a rash or slight change in skin (or hair) pigment. The skin

pigment change is rare but can look like a “dirty suntan.” Plaquenil can

make fair-skinned people more sensitive to sunburn.

 

The Plaquenil side-effect of greatest concern involves the eyes. The

likelihood of developing Plaquenil eye problems depends upon the dose

and duration of treatment. Eye problems are more common when very large

doses are ingested and usually take months or years to occur. Eye

side-effects from Plaquenil also may be more common in people over the

age of 60.

 

Eye problems related to antimalarial drugs were more common years ago

than what is experienced today. There are at least 3 reasons for

this. First, Plaquenil seems safer than past antimalarial drugs. Second,

larger doses of the antimalarial drugs were prescribed in the past than

are currently recommended. Third, there is a greater awareness of the

potential for antimalarial eye problems. Thus, patients have thorough

eye examinations more frequently now than was once the practice. With

the currently recommended doses of Plaquenil, the risk of eye

side-effects is about 3%. 

In the past, it was believed that the eye side-effects of antimalarial

drugs were irreversible and even progressive after the drug was

discontinued. However, with the proper precautions, irreversible or

progressive eye changes due to Plaquenil are extremely rare.

 

Symptoms of Plaquenil eye side-effects include: blurred vision,

sensitivity of the eyes to sun light, decreased night or color vision,

decreased ability to see objects at the edge of vision, black spots in

the vision or light flashes or streaks. If any of these visual changes

occur, the Plaquenil should be immediately stopped and an eye specialist

(ophthalmologist) consulted. Since early Plaquenil eye problems can

occur without symptoms, regular examinations by an ophthalmologist are

essential—even if vision is normal. It is common for rheumatologists to

recommend eye examinations every 6 months. If the ophthalmologist

detects possible eye toxicity, the Plaquenil should be immediately

discontinued.

 

Other rare side-effects (occurring in less than 5% of patients) include:

nervousness or headache, ringing in the ears, muscle weakness and

decreased blood counts.

[Guest guest]

Hi, All,

Is anyone else taking plaquenil? It is also an anti-malarial, but new

research shows it works well ag. LD taken with biaxin or erithro.

I ask bec. someone I know in the Foreign Service told me, " Oh, everyone

knows that anti-malarials wipe you out! "

Do they? Are others xtra fatigued by it?

Thanks -

beth F. - I neglected to tell you how happy I am that you are doing

so well! Please excuse my momentary brain fog. It isn't all gone.

Love to all, Marie

[Guest guest]

Marie,

Hi. I am not taking plaquenil, but I am taking an anti-malarial drug. It does

make me more tired when I take it. I take it with Doxy. I am feeling better.

Good luck,

Mar

Marie Henson wrote:

> Hi, All,

>

> Is anyone else taking plaquenil? It is also an anti-malarial, but new

> research shows it works well ag. LD taken with biaxin or erithro.

>

> I ask bec. someone I know in the Foreign Service told me, " Oh, everyone

> knows that anti-malarials wipe you out! "

>

> Do they? Are others xtra fatigued by it?

>

> Thanks -

>

> beth F. - I neglected to tell you how happy I am that you are doing

> so well! Please excuse my momentary brain fog. It isn't all gone.

>

> Love to all, Marie

>

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

> Would you like to save big on your phone bill -- and keep on saving

> more each month? Join beMANY! Our huge buying group gives you Long Distance

> rates which fall monthly, plus an extra $60 in FREE calls!

> 1/2567/5/_/484634/_/957412310/

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>

> Send to -Offtopiconelist messages unrelated to Lyme, please.

> Archives can be found at:

> /group/lyme-aid.

> They are filed by month, pick a month and search those archives for subjects

you are interested.

> Lyme chat, go to this URL:

> /chat/lyme-aid

> Should you have trouble opening the page, go back to /

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[Guest guest]

Marie,

Hi. I am not taking plaquenil, but I am taking an anti-malarial drug. It does

make me more tired when I take it. I take it with Doxy. I am feeling better.

Good luck,

Mar

Marie Henson wrote:

> Hi, All,

>

> Is anyone else taking plaquenil? It is also an anti-malarial, but new

> research shows it works well ag. LD taken with biaxin or erithro.

>

> I ask bec. someone I know in the Foreign Service told me, " Oh, everyone

> knows that anti-malarials wipe you out! "

>

> Do they? Are others xtra fatigued by it?

>

> Thanks -

>

> beth F. - I neglected to tell you how happy I am that you are doing

> so well! Please excuse my momentary brain fog. It isn't all gone.

>

> Love to all, Marie

>

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

> Would you like to save big on your phone bill -- and keep on saving

> more each month? Join beMANY! Our huge buying group gives you Long Distance

> rates which fall monthly, plus an extra $60 in FREE calls!

> 1/2567/5/_/484634/_/957412310/

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

>

> Send to -Offtopiconelist messages unrelated to Lyme, please.

> Archives can be found at:

> /group/lyme-aid.

> They are filed by month, pick a month and search those archives for subjects

you are interested.

> Lyme chat, go to this URL:

> /chat/lyme-aid

> Should you have trouble opening the page, go back to /

and make sure you are registered with a password. You can ask ONELIST to

remember you, and will only have to do this one time.

> To unsubscribe, send email to -unsubscribeonelist

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> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

[Guest guest]

That's all it did for me. I had a terrible outbreak of P, worse than

ever. The bad thing is that it gave me new areas that had never broken

out before and now when I flare I have more P than prior to the

Plaquenil. After this nightmare, my doctor switched me to mtx.

>I found this information on Webmd.com-thought it was interesting!

>Psoriasis—Hydroxychloroquine may bring on severe attacks of psoriasis.

>

>Marcie

[Guest guest]

I did got a call from the dr yesterday to quit taking the plaquenil

immediately. I am to wait a week and then take it at half dose to see how I

respond. The rash was gone by this afternoon...but what a miserable 36 hrs

before! I don't know if I was " allergic " to sulfa, but it gave me a

terrible headache. The rhuemy said this was the last possibility before

MTX. I just do not want to take that drug. I have been on cholesteral

medicine for years, so my liver is already in danger. In addition to that,

we have liver cancer in our family. Thanks for the concern.

Ks Di

[Guest guest]

:

I know all about the plaquenil! After two weeks, i was breaking out

in hives all over! I had been prone to nervous itchy bumps in the

past, but not like this! I was on the phone to the doctor quick and

he took me off of it. SCAREY! Yours sounded much worse than mine

though. Sorry you had to go through that.

Good Luck & God Bless

Robbi

[Guest guest]

I mentioned this in an earlier post but feel it is worth

repeating. Plaquenil worked well for me but I had to quit because

while I was carefully getting my eyes checked often I permanently

lost a considerable amount of my hearing. It is irreversible so

please try to be cognizant of your hearing while taking this med. My

doc (who I trust and respect) didn't think it could be caused by

plaquenil but I went to 3 hearing specialists and they all said the

same things........ " stop taking plaquenil " . I did but I really miss

it. It didn't make me sick and it did help with inflammation. I am

not recommending that anyone quit taking it, just be careful and if

you notice any hearing loss look into it asap.

Take care,

[Guest guest]

hi,

plaquenil was one of the first drugs i took, and i followed the

same pattern as you. the only difference was, i am allergic to

sulfa(which many of us seem to be) and after the bumps my skin

starting peeling off. it was like my whole body was sunburned,

and it peeled from april to july. i couldn't stand to be touched,

not even to have my kids hug me. i became anemic, my arthritis, which

had been mild, became disabling. i had to take 60 mg prednisone a day

just to get by. it was awful, and the cause of most of my troubles, i

think. the first rheumy i saw, i didn't argue with about being put

on plaq, relafine and pred. at the same time, even though i wasn't

comfortable about it. i was raised not to argue with people. after

that, i ask, i argue, and if the dr. doesn't like it, i leave. i have

had this for almost 9 years, and i have to say, out of the thorns,

came the rose of self-confidence. it's your body, you know what it

is doing, don't ever be afraid to ask questions, and do what you need

to do for YOU!. i hope you feel better, and if you don't know if you

are allergic to sulfa, find out, several arthritis meds. have it.

susan in ohio

[Guest guest]

When I was first diagnosed with PA, my physician prescribed

plaquenil in conjuction with sulfasalazine (sp). I took it for

quite some time only to have to be put on predisone and numerous

pain meds because it just didn't work for me. After some time, with

no real benefit for me, he prescribed methotrexate. For me, that

was the best. However, I had to stop taking it because my husband

and I were trying to have a child. Currently, I am using Enbrel

along with 800mg of Ibuprofen.

Everyone is different, and this may be the drug for you. It did not

work for me. Sorry I couldn't be more positive about it. Only you

know how you feel, so let your doctor know what works and what

doesn't work for you. Keep trying until you get the one that does

it. Good luck.

[Guest guest]

Dear Liz,

My doctor put me on Plaquinel and it did act up my psoriasis. Luckily, I

don't' have it has bad as most people, but it turned it a bright red and it

didn't seem to help me at all. The first thing my new arthritis doctor did

was take me off of it. He said it was a weaker drug and wasn't good for

psoriasis. You also have to have your eyes checked every 6 months since it

can cause rapid blindness as a side effect. That always sort of scared me.

Luckily, I never had that side effect. Now whether my current doctor is

correct remains to be seen. So far he hasn't helped me much either where a

drug is concerned.

I wish you luck and I guess so me doctors just disagree over drug. Take

care, Fran

[Guest guest]

Hi

I have been on Plaquenil for 2 weeks now and it seems to be ok. My rheumy added

it to my Methotrexate and celebrex to try and get my arthritis settled. He did

say to remember to tell my optician when I go for an eye test. Hope it works for

you.

(Wirral, UK)

[Guest guest]

Plaquenil was the first step after nsaids from my Rhumy. Now I never

had P before PA so I have no history with P. However my P got very

bad covering legs back stomach arms that I had to drop it and go to

MTX. On the plus side it did control the PA.

The P is now receding. Plaquenil seems to be a common first step

cause the next steps are harsher drugs like MTX.

[Guest guest]

Hello Liz,

I used plaquenil along with mtx and I think it worked well. I had my eyes

examined every month because I guess it can cause some vision problems

(peripheral I think). I did not experience much flare of the P but of

course all of us react in different ways. One of the lessor discussed side

effects is hearing loss. I lost about 1/3 of my hearing, permanently,

before we realized what was happening. I don't tell you this to scare you,

just a caution. I suggest you get a baseline hearing test done then check

it every couple of months while on plaquenil. I found the free exams to be

just exactly the same as the very expensive ones at the specialists office

and they are painless. I wish I had known ahead of time so I wouldn't have

so much hearing loss. It seems that all meds have a down side but they do a

lot of good too. Just think where we could be if not for the meds.

I wish you only good effects, Cheri :-))

[Guest guest]

I have been using plaquenil for about ten years. I have not had a P

flare up during this period. I have also been taking one NSIDS or

another during the entire period. For the past several years, I have

been on Celebrex. My PA has not changed during this time, which I

take it as good. Therapeutically, my results are good. I am

moderately active. I ski and do some other sports. It's had to know

how much plaquenil has contributed, but I suspect the effect has been

to prevent worsening.

You should also be aware that plaquenil has a VERY low, but known

risk of causing damage to your eye. Taking it required regular

plaquenil eye exams. I have mine once per year. Again, I have had

not problems.

I hope this helps and good luck.

[Guest guest]

Hi Liz!

> I saw my Dr. on Wed, and since I got no help from the nsaids, he put me on

Plaquenil.

>

> Has anyone used this drug before with good benefits?

Plaquenil is hydroxichloroquine. I have been using chloroquine, which is

identical in its effects but a tad harsher in its side effects (nut also much

cheaper!) for about one and a half years now. It has produced a good effect on

the PA, so much so that when combined with a NSAID (indomethacin in my case) I

have no pain in any joint now, only in a few tendons, and those are not too bad.

> I had never heard of it before, so I did some research and found that it

should be used in caution because it could case a flare in p. I've got one of

the top Dr's, so I know he knows what he's doing, but I must admit I'm just a

little worried.

That's true too. In my case, it caused a marked worsening of the psoriasis. Not

in the form of flares, but making the average level of psoriatic activity

higher. The dermy says I must stop chloroquine, while the rheumy says I must

keep taking chloroquine, and control the psoriasis otherwise. I still haven't

been able to make the dermy talk to the rheumy. Since the untreated joints hurt

more than the chloroquined psoriasis itches, I take chloroquine, and try to

drown the psoriasis in Dovonex and tar shampoos.

Another hint which may be useful for you: Chloroquine and its look-alikes act

slowly. You can expect the beneficial effect to start only after a month or so,

and build up until the second or even third month. The side effects instead

appear faster, about one week with full side effects after two weeks. So you can

now watch what happens with you. If after a week or two your P flares, blame

Plaquenil. If after a month your joints start getting better, thank Plaquenil!

When suspending that stuff, the effects and side effects are slow to disappear

too - again, the good effect holds for a month, and the bad for a week.

If you stay on Plaquenil for a long time, go to an oftalmologist after half a

year or so, and have him look into your eyes to see if the chloroquine is

crystallizing on your retina. That can happen, and if you let the crystals grow

too much, it will impair your sight. If there are any crystals, you must suspend

Plaquenil until they have dissolved.

Actually, I haven't had that test myself... should go and have it!

Cheers,

Manfred.

--------------------------

Visit my hobby homepage!

http://www.qsl.net/xq2fod

--------------------------

[Guest guest]

Yes, I have tried it. I took it for a month before going on Minocin. The pain

was greatly reduced within days. When I went to the A/P doc in Boston, he said

I would prefer if you didn't take it along with the Minocin. But he left the

choice up to me. I stopped that very day and started my minocin.The pain was so

mild, and it never came back. That was last December. I take nothing for pain

now. But there was a time when I could not roll over in bed w/o crying from the

muscle aches & pains. In fact, I would scream if someone touched my hand. My

friend did and I scared her half to death. I felt so bad, but that's how

intense the pain was. Going on it to reduce the inflammation which causes the

pain,for a short time, will reduce the pain. Overall, I think Minocin alone

should be the drug of choice. Dolores

ktandtm <ktandtm@...> wrote: I just recently started plaquenil for MCTD.

Does anyone know how

effective this is and if there are any better treatments? I just have

joint pain and swelling at the moment as symptoms and also Raynauds.

Any help would be great.

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

>Yes, I have tried it. I took it for a month before going on Minocin.

I tried it too. It helped a bit, but it took about 6 weeks to work,

which the dr. said it could take. I gave it up because it wasn't

enough. Minocin helped my terrible knee after 4 months. The knee

had inflammatory arthritis (as determined by biopsy) not a muscle

issue or tear, so I concluded that minocin worked on inflammatory

arthritis. e