other important info from H

[Guest guest]

From: Hob@...

Date: Sun Aug 27, 2000 2:28 pm

Subject: Some other important info

When I posted my basic stuff I forgot some important items:

For Prednisone:

Another side effect is that it can make you VERY moody in high doses. You

might be quick-tempered and nasty or you might be depressed and weepy. Then

again you might alternate between the two. Be sure that you tell your

family that this might happen and ask them to work with you -- if they get a

tounge-lashing for something minor they should give you a hug and tell you

they know it is the prednisone and you really didn't mean it. Understanding

reminders may help you control those freaky episodes a little.

Some list members take anti-depressants if they got really low without relief

and their doctors felt it was necessary. Some of us take St. 's Wort

(about 1500 MG a day) if the depression is mild and is merely episodes of

quickness to tears and hyper-sensitivity. Whatever we do to handle

depression it is with our Doctor's OK.

Do not self medicate in any way. Do not take St. 's Wort, Folic Acid, B

vitamins, large doses of vitamin E, A and C (or other supplements that boost

the immune system), mulit-vitamins, selenium, glucosamine/chondratin,

aspirin, ibuprofin, benedryl or any other over the counter med/pain killer or

supplement without first discussing it with your doctor. If you want to add

something new to your daily regimen, take the bottle or the label information

to your doctor to get approval.

One thing most docs will approve without hesitation is calcium but you should

still ask how much to take.

You should also read the drug interaction advice for any supplement you might

want to take. You will find that at your drug store. Every pharmacist has

one and some drug stores have them out on the counter -- you don't have to

ask for them.

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In my last post I mentioned the antibiotics Minocin and Zithromax. They are

drugs that are in the tetracycline family. Some of the list members take

them because their doctors have reason to believe they have an underlying

infection that may be triggering the RP. When you ask your doctor about

those drugs the first thing that will come up is that they are used for

mycoplasmas that cause STDs (Sexually Transmitted Diseases). If you have

ever had an STD you should definitely ask your doc about those drugs. But

if you have not, then you should know that the drugs are also used for other

forms of mycoplasma -- one that causes pneumonia, for example. If your

doctor agrees to test you for mycoplasma experimentally be sure that he tests

for all forms of it.

Here is info about Minocin from Connie -- snipped here and there:

.... Minocin is usually regarded as having few side effects. With any

antibiotic, you can have yeast overgrowth (thrush or Candida), or an even

rarer complication called Clostridium difficile (or C. difficile) which is an

overgrowth of the wrong kind of bacteria in the digestive tract. It has to

be treated with more antibiotics. For these two reasons, I take acidophilus

every night to help prevent these problems. I have had Thrush (white yeast

overgrowth in the mouth) from time to time and my doctor has given me

Nystatin, which takes care of it. One side effect that it peculiar to

Minocin is called Minocin-induced hyper-pigmentation. It can look like

bruises on the arms, legs, face.....just about anywhere. From what I have

read, the

hyper-pigmentation is a harmless, cosmetic issue. At some point, Dr. Franco

may switch me to Doxycycline, which is a similar antibiotic to Minocin. The

doxy does not cause the hyper-pigmentation and the bruises will eventually

fade. Anyway, many people have taken Minocin on a long term basis for acne

and there have been far fewer side effects when compared to other

medications.

With rheumatoid arthritis and other connective tissue diseases, the Minocin

is continued until the labs return to normal and then is continued for

another 6-12 months and the dose is then cut in half for another 6-12 months.

Some people choose to continue on a maintenance dose indefinitely. As far

as RP.....I don't know? I do know that there are people on this list who are

very happy with their improvements on the Minocin.

Sandy said she noticed in the initial months after starting the Minocin that

she felt more tired, run-down, and other symptoms also increased. According

to The New Arthritis Breakthrough, by Henry Scammell, this is called a

Jarisch-Herxheimer reaction. It is because the Minocin is causing bacteria

to die off and they produce toxins which cause the additional pain and

fatigue. This is only temporary :-) and it also means that the Minocin is

hitting the target. Some people also notice lots of dizziness with the

Minocin. This can usually be aleviated by reducing the dose to no more than

50 or 100 mg on Mondays, Wednesdays, and Fridays.

For many people with RA, Lupus, Reactive Arthritis, Polymyositis,

Dermatomyositis, and Fibromyalgia ....the Minocin has given them their lives

back. There are 400 or so members of rheumatic@egroups \who will be glad to

tell you so. The originator of the whole idea, Dr. McPherson Brown

treated over 10,000 patients in his lifetime with this method. He was met

with resistance from the entire medical community for much of his

career...finally, more and more doctors are using this protocol for RA. Some

are even willing to try it for other (Rheumatic) diseases.

There are also members of this group who are definitely seeing positive

results with the Minocin. (One of the problems is that it takes

time.......some did not see improvemnt before a year!

As for me......I am very grateful for the Minocin! I have been diagnosed

with dermatomyositis, which is a connective tissue disease that affects the

muscles and skin. I can definitely tolerate any remaining symptoms there. I

have also been tentatively diagnosed with RP.....but it is not for sure, yet.

I feel that the Minocin is helping in that area, too.......maybe that's why

it is hard for the doctors to diagnose?

If you want to check out the whole Minocin idea, you can look at

www.rheumatic.org

Connie

says: When I had my first red ear it was called cellulitis and treated

with Levaquine. That made me nauseous so they changed it to doxycycline

mentioned by Connie. Six weeks after the ear cleared up I got another flare

in the other ear. This one was treated only with doxycycline and when that

was gone I was given a maintenance dose of tetracycline to take routinely

every day for an undetermined length of time. While I was on the

tetracycline I had several more severe vasculitis flares in ankel, lungs and

kidneys and finally severe vertigo. There is no way to know if they were

caused by RP of polyangiitis. I had been on the tetracycline and doxycycline

for about 4 months when that happened.

When my Rheumy eventually tested me for mycoplasma bacteria the test came

back negative. If I had no underlying infection that was the cause of my

flares I would guess that is why I flared even though I was on tetracycline.

My flares probably were not triggered by the presence of mycoplasma.

Please pay attention to Connie's comment about Thrush -- the " white stuff "

that you may find in your mouth. It can occur even if you are not taking

antibiotics. If you see white spots (there are colored pictures on the

Internet -- search on keyword Thrush Mouth) do not wait to see your doctor.

It is relatively harmless/just a bit of a nuisance, but if you do not get it

under control it can get down into the esophagus and cause some serious

problems. So report it at once.

H.