To Sandie

[Guest guest]

Pat, that's good advice for Sandie and everyone. Finding an excellent

physician to partner with you is so very important.

Sorry that your own situation is so tough. I can only imagine how difficult

it is to give your husband the constant care that he needs.

I hope Remicade continues to help you.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] To Sandie

>

> Dear Sandie,

>

> I know you are desperate to ease your pain, especially with small

> children.

> They are probably the thing that keeps you going and, with small kids,

> even when you are in pain, you have to keep going. I don't know what

> treatments you have tried but keep trying until you get something that

> works. I started out with some of the lesser drugs, graduated to

> methotrexate

> and Humira and never felt so good after the Humira once started taking

> effect. Then I had a reaction to Humira and thought, no wished, I could

> just go ahead and die. My doctor didn't seem to care that I was in pain

> when I came off of the Humira and drug his feet about getting papers

> filled out for a different drug. I changed doctors and he started me on

> Remicade. So far that has helped and you can increase the dosage

> until you find a comfort zone. Bottom line, don't let this doctor run

> your life, if he is unsympathetic, uncaring, then UN-engage him!

> Life is to short to struggle with those kind of doctors. Look for

> someone who cares, please.

>

> My husband is a paraplegic and I have to turn him every two hours

> and take care of his every need regardless of how I feel. I know that

> sometimes " have to " is the only thing that keeps me up and moving.

> I am sure you are in the same boat with little ones. Please see another

> doctor if this one is uncaring.

>

> Remember, half of the doctors practicing medicine graduated in the

> bottom half of their class.....(a little humor). You have to find

> something

> to make you smile.

>

> Please feel free to write to me pathinze@...

>

> Hugs,

> Pat

[Guest guest]

Pat,

Thank you so much for your kind words. Since I am so new to the RA I think I

am in denial. I keep thinking I can keep going and push myself. I get angry

with myself when I am in pain or I can't run around with my kids. I am trying so

hard to get healthy.

You are right about the doctors, yours sounds terrible too. I think these

doctors hear people talking about pain all day long that they just remove

themselves from the situation. I feel with my doctor that he was annoyed when I

showed up with the research I had done and did not want to answer any questions

I

had. I will give him one more visit so I can find out the results of my x-rays

that he wanted done. I do have an appointment with my primary physician and

will be asking him for a referral to a new rheumy next Friday. Until then I am

hanging on but barely. My kids do keep me going but sometimes I feel as if Im

dragging behind them. My husband doesn't really understand my pain and that

upsets me at times. I just want to be the old me.

It sounds as if you have a lot on your plate too. I know you must care for

your husband but also remember to take time for you.

Thank you again.

sandie

[Guest guest]

Hi Sandie,

I don't want to give you a false sense of well being because

each of us react differently to the same medication. I have

been on Methotrexate for a couple of years now and the only

reaction that I did notice was a slight loss of hair. However

the doctor prescribed folic acid and since I started taking

that, I haven't noticed any more hair loss. Now, as far as the

medicine helping it seems to help but as you are probably

now familiar with this disease, sometimes your pain is

manageable and sometimes not.

I know it is difficult to begin a new medicine, especially when

it is classified as " chemo " , but when the pain gets unbearable

I think you will try just about anything. I know you are desperate

to get this pain under control so you can spend quality time with

those precious children.

I have heard of more adverse effects from Prednisone than I

have about the Methotrexate, especially weight gain. I think you

are fighting a losing battle if you are trying to lose weight and

are also taking the Prednisone.

Do yourself a favor and DO NOT try and deny that you have a very

debilitating disease, lots of people will do that for you :-( The sooner

you get the proper treatment, the combination that works for you,

the sooner you can delay the progression of this disease.

I wish you the very best. Please let us all know how you are doing.

Hugs,

Pat in Kansas