A Hard Choice - long

[Guest guest]

Hi OKD and anyone else who asked about antibiotics,

Here is a good article giving a brief overview of some studies on

minocycline:

http://www.nras.org.uk/about_Rheumatoid Arthritis/newly_diagnosed/

which_drugs_are_used/minocycline_therapy_for_Rheumatoid Arthritis.aspx

I don't think I have become resistant to it but I can't be sure. I

have a bit of pain now and never used to have but I was also taking

plaquenil then. Some people have a few years on minocin, then change

to some of the other antibiotics for a while, then go back to

minocin. I think tweaking drugs is common no matter what we use. If I

get an infection I use a different antibiotic and stop the minocin

for that time, then go back to the mino. I used to take minocin 100mg

three times a week and plan to do that again if I can. At the moment

I'm on 100mg five days a week. The recommended dose is 100mg twice a

day but I'm always trying to minimize my drug intake. It's too

complicated to go into the way it's supposed to act here but I can

send you some articles I found on the Rheumatic group website

and the Roadback Foundation website if you want. There's also a great

book called The New Arthritis Breakthrough by Henry Scammell which I

very highly recommend.

I think the best thing to do if possible is to find a rheumatologist

in the US who specialises in this treatment and who you can see once

a year or so. The Roadback Foundation has a list of doctors in the

US who do this. The alternative is to be part of the forums and ask

other people what they've done, much as this forum operates. That's

what I have to do. It's not easy but then neither is making decisions

about any medical treatment if we want to be proactive about our own

disease.

Side effects for me have been a bit of dizziness which passed after a

couple of weeks, candida (yeast increase in the gut) which I already

had from cortisone asthma drugs and which I control using diet and

probiotics; a few people get discoloration of their skin or nails but

that's never happened to me. I was worried about lung problems

because of being a chronic asthmatic but that's never happened either.

I do all the alternative things I can, such as alkaline diet

(basically no alcohol, coffee, red meat, tomatoes (italian egg

tomatoes ok in moderation), oranges, sugar or white flour; I also

take 10 fish oil capsules a day for inflammation and eat gluten free

most of the time and can't have any dairy except for butter because

of food sensitivities. I use turmeric and ginger as much as I can

bear (don't like curry though).

Re prednisone, I hate it and love it. I've put on a lot of weight

when I've had it, but it comes off again when I stop using it. The

dosage I've had doesn't do anything to me mentally, but when I had

25mg for a couple of days I found it difficult to know where to put

my feet when walking. These days I rarely have more than 2mg and my

doctor says 1mg a day is fine to be on for the rest of my life. But I

don't want any if I can help it. Cortisone is also bad for

diverticulitis which I have.

Basically, it's choose your poison! Some drugs are good for some

people and bad for others. They all have some side effects, some

worse than others. But the alternative is pain and crippling over the

years. I'll take what I need to but not until I really need it and

that's not yet.

Stress: whenever I get stressed I get a flare up of RA. I do as much

relaxation (yoga nidra) as I can; practice not letting my mind run

away with negative thoughts; watch comedies; laugh as much as

possible; don't watch the news. I've always tended toward depression

and pessimism so it's been a very conscious struggle to find the

positive as much as I can. But it's worked quite well. It's just

become a way of life and I'm so much happier than I used to be. It

makes pain easier to bear if my mind is functioning well.

Good luck with your decision making,

Ros