response about my drug situation

[Guest guest]

Dear Carol,

I deleted your first letter about Asulfidine, which is also called

Sulfasalazine. I took this along with plaquinil for awhile 5-6 years ago.

It made me feel fine for quite awhile and then quit working, leaving me in

horrible pain. I didn't want to go on methotrexate

because I had a friend who died while on it, so I was suffering horrible

pain and flare until I FINALLY started reading on my own and discovered The

Road Back. After much trouble, I got my rheumatologist to give me a trial

on minocycline. I started relafen the same day and had some massive

headaches for the first two weeks (really scary ones). I also had dizziness

and nausea if I took the mino on an empty stomach.

Then I gradually and steadily improved and within three months, my sed rate

had dropped from almost 100 to 9. I started riding my bike which was

difficult since I had hardly been able to walk, but within 6 months, I was

riding twenty miles a day at a fast pace. I felt well, but I started having

hyperpigmentation from the minocycline. Most people don't get it, but

whenever I got a bruise, the mino left a blue gray deposit at the site that

NEVER went away. Then I started to get the deposits at the base of my front

teeth, so, out of vanity and a concern that these deposits could hurt me, I

switched to doxycycline.

I was fine for awhile, but the doxy didn't work as well for me as the

minocycline and the relafen stopped working leaving me with just ibuprofen.

Now, I believe that I was taking too much doxy at 200mg a day, but I took

that because that is what I had taken on minocycline. I was really

depressed over being transferred away from my job and friends because of my

husband's job. I also lost my good rheumatologist and haven't found another

one who will do the AP, so I am just getting prescriptions from a gp who

never remembers me and doesn't know or want to know about the AP or

anything.

I moved in the middle of the year, so I ended up taking that whole year

off (I am a teacher).

I had been working for 22 straight years and didn't know what to do with

myself in a new city with no structure and no friends. I started staying in

bed, not exercising, moping (should have been mopping) around, etc.

Foolishly, because I felt pretty well at the time, I asked for a referral to

a psychiatrist because I couldn't make myself get up in the morning and go

to bed at night. He gave me all sorts of antidepressants, tranquilizers

(Then I slept ALL the time), and Adderall, which is dextroamphetamine, to

wake me up.

Three years have gone by since the move. The doxy worked less and less

(maybe because of all the other stuff), but I stuck to it since I didn't

know what to do. I was in so much pain, and I was noticing some damage in

my hands, so I switched to Biaxin, but I was taking 1 gram a day every day

and it threw me into a herx that lasted eight months and increased the

damage to my hands and knee and elbow. I walked less and less and now I

have trouble walking at all.

I recently added tetracycline, so I was taking 1 gram of each a day, and

then I got a massive yeast infection everywhere. So I have been cutting and

experimenting with the dosage and I am currently starting on 500mg or

tetracycline one day and 500mg of biaxin the next. I don't know if this

will be enough to do anything or what will happen, but I am trying to break

the cycle of pain and damage. My hands have started hurting again and they

had finally stopped hurting.

But I have become so sensitive to so many foods, I never know what is

causing the pain. I do think I am better than a few months ago, but I also

started Celebrex during that time, so it could be that.

As you can see, I am very out of the know at this time in my life, but, I

still believe in the AP if the right dose and combination can be

ascertained.

Why did you go off the methotrexate and what are you doing for the AP? I

have forgotten if you told this.

love,

Gloria