Re: LYNN~ Saw My Rheumy Today!!

[Guest guest]

Wow, Lynn! That was a lot to take in! Sounds like a productive visit! Lots of good information! Thanks for mentioning the CQ-10. I think I will try that. Interesting about the anemia...it is something I have had problems with intermittently over the years since I was about 16.

Vickie

Saw my rheumy. Gee, when I asked about the flu

shot...she opened the door, called "Francine! We need

a flu shot!" and the deed was done!

I like my rheumy...although sometimes we go back and

forth and forth and back...You will not believe what I

did. Methx by injection, have gone through 3 types of

needles cause the pharmacist (not my regular one)

thought she knew better. (Doc told me she had at least

3 conversations with the pharmacist and couldn't get

it through her head that I shouldn't be using insulin

needles!) As it turns out...I have not been taking

25mg a week....but 2.5mg a week for the past 3 weeks!

Holy cow...and my cpk was 50...my aldolase 4.6 (I

think, I didn't get my copy.) My mistake gave her

some info tho on how I'm doing. So, she cut me back

to 20mg. of methx a week and 10 mg of Pred Every Other

Day!! WAhooo!!

I mentioned exercise. Golly now I know why she is so

thin...she knows more about exercise than I could

imagine. TOld her about the Firm and she is not

impressed by it, in fact, she feels it could hurt me.

She said she's done step aerobics for years...if I

want to do it, very low step only, no jumping, etc.

Use common sense (good luck!)

Anyway, she talks fast and it's hard to get a word in

sometimes. Mentioned RA and anemia. She said she

doesn't want to add another disease to my roster.

Well, what does that mean? She's watching me. Said

anemia is also related to autoimmune disease and feels

that's the real reason I had it.

Talked about my cholesterol. Discussed my history

quickly and she finally said I probably just have

lousy enzymes no matter what I do, and no, I will

never again be permitted to use statins. Thank you!

Speaking of enzymes, she said there's a study and

proof that C10Q (is that right?) has been found to

help with myopathies...so she strongly recommends 60mg

twice a day. And she said get a good brand, not some

unknown like you might find on the internet.

Finally...you know every month I have asked for the

antibiotic protocol and was turned down. Today, I

said I need you to listen to me, cause this is very

serious to me. I told her I never knew such paranoia

or depression and that it really put my job in some

jeopardy, caused me to isolate (which is real easy for

me to do) and have other issues, like my eyes. So, I

said if I flare again, I don't want the Pred to be

increased again...I want off it and to get things back

in order, if possible. She was quiet for a few

moments. I also told her I wanted very much to be her

guinea pig and I wanted her to have the spirit of

speculation and use me to prove or disprove its worth.

I think I had tears in my eyes...as much as I hate

crying. I said I never really told her or my GP until

two months ago how bad it was, that I really have no

one to rely on except you guys here and one friend at

work, and asked for an antidepressant. Finally, after

some silence on her part, she smiled and said "Well, I

understand now, and yes, your request is reasonable."

Because I'm doing so well on the Methx, if I flare

again, we're going to try the AP with the Methx and

keep our fingers crossed really hard! I'm thrilled.

And she was way cool about my weight...I told her what

a failure I felt like somedays...having bariatric

surgery and regaining weight (not all of it, but

enough to make it terrible for an overeater like

me...Pred is not the med to be on if you have an OCD

and it happens to be food.) She told me I am not a

failure...everyone on Pred gains weight and that the

camel hump will go away, the extra "bumps" would

disappear...I've got to exercise daily and that's all

that's to it! So, all in all, I forgot half of what I

wanted to talk to her about (I swear, I'm going in

with notes again next month!) But, I'm happy with the

outcome!

Thanks for letting me ramble!

Hugs,

Lynn

Check out my website! http://www.vickieenkoff.com

Rubber Stamp Special: Grab bag of 15 images for $15.00

Check my Ebay Auctions: Ebay ID: VickieEnkoff

[Guest guest]

Wow, Lynn! That was a lot to take in! Sounds like a productive visit! Lots of good information! Thanks for mentioning the CQ-10. I think I will try that. Interesting about the anemia...it is something I have had problems with intermittently over the years since I was about 16.

Vickie

Saw my rheumy. Gee, when I asked about the flu

shot...she opened the door, called "Francine! We need

a flu shot!" and the deed was done!

I like my rheumy...although sometimes we go back and

forth and forth and back...You will not believe what I

did. Methx by injection, have gone through 3 types of

needles cause the pharmacist (not my regular one)

thought she knew better. (Doc told me she had at least

3 conversations with the pharmacist and couldn't get

it through her head that I shouldn't be using insulin

needles!) As it turns out...I have not been taking

25mg a week....but 2.5mg a week for the past 3 weeks!

Holy cow...and my cpk was 50...my aldolase 4.6 (I

think, I didn't get my copy.) My mistake gave her

some info tho on how I'm doing. So, she cut me back

to 20mg. of methx a week and 10 mg of Pred Every Other

Day!! WAhooo!!

I mentioned exercise. Golly now I know why she is so

thin...she knows more about exercise than I could

imagine. TOld her about the Firm and she is not

impressed by it, in fact, she feels it could hurt me.

She said she's done step aerobics for years...if I

want to do it, very low step only, no jumping, etc.

Use common sense (good luck!)

Anyway, she talks fast and it's hard to get a word in

sometimes. Mentioned RA and anemia. She said she

doesn't want to add another disease to my roster.

Well, what does that mean? She's watching me. Said

anemia is also related to autoimmune disease and feels

that's the real reason I had it.

Talked about my cholesterol. Discussed my history

quickly and she finally said I probably just have

lousy enzymes no matter what I do, and no, I will

never again be permitted to use statins. Thank you!

Speaking of enzymes, she said there's a study and

proof that C10Q (is that right?) has been found to

help with myopathies...so she strongly recommends 60mg

twice a day. And she said get a good brand, not some

unknown like you might find on the internet.

Finally...you know every month I have asked for the

antibiotic protocol and was turned down. Today, I

said I need you to listen to me, cause this is very

serious to me. I told her I never knew such paranoia

or depression and that it really put my job in some

jeopardy, caused me to isolate (which is real easy for

me to do) and have other issues, like my eyes. So, I

said if I flare again, I don't want the Pred to be

increased again...I want off it and to get things back

in order, if possible. She was quiet for a few

moments. I also told her I wanted very much to be her

guinea pig and I wanted her to have the spirit of

speculation and use me to prove or disprove its worth.

I think I had tears in my eyes...as much as I hate

crying. I said I never really told her or my GP until

two months ago how bad it was, that I really have no

one to rely on except you guys here and one friend at

work, and asked for an antidepressant. Finally, after

some silence on her part, she smiled and said "Well, I

understand now, and yes, your request is reasonable."

Because I'm doing so well on the Methx, if I flare

again, we're going to try the AP with the Methx and

keep our fingers crossed really hard! I'm thrilled.

And she was way cool about my weight...I told her what

a failure I felt like somedays...having bariatric

surgery and regaining weight (not all of it, but

enough to make it terrible for an overeater like

me...Pred is not the med to be on if you have an OCD

and it happens to be food.) She told me I am not a

failure...everyone on Pred gains weight and that the

camel hump will go away, the extra "bumps" would

disappear...I've got to exercise daily and that's all

that's to it! So, all in all, I forgot half of what I

wanted to talk to her about (I swear, I'm going in

with notes again next month!) But, I'm happy with the

outcome!

Thanks for letting me ramble!

Hugs,

Lynn

Check out my website! http://www.vickieenkoff.com

Rubber Stamp Special: Grab bag of 15 images for $15.00

Check my Ebay Auctions: Ebay ID: VickieEnkoff