Re: ? for Barbara on biologics

[Guest guest]

Hi Barbara,

 

May I ask why you are not a candidate for biologics?  I'm still undecided as to

what to do....  So any information you can share would be helpful.

 

Namaste',

Sheryl

[Guest guest]

Hi Sheryl.  When I was 32 I tested positive for TB.  Because of my age, I was

under treatment for it.  I became allergic to the 2 RX's I had to take. 

Therefore, I have no protection at all.  I went to a TB hospital to see a Dr.

there, and had chest x-rays all the time.  I did not have TB, but had the germ

in my body.  I know all the biologic's have a warning about TB.  I talked this

over with my Rheumy, and I am not willing to get TB in my lungs or my bones. 

Even though she wanted me to see a specialist before taking a biologic, I said

no, it was much too risky for me.  I so hope what I take now does the trick for

me for a long time.  I know biologic's help so many people and it is good it is

out there for us.  I am fearful because of that particular side effect.  If TB

didn't enter in the picture, I would definately try it.  I am willing to try

most anything to get this ugly disease under control.

 

I hope my information helps you.  It is not easy decision for anyone, but a

good chance it might be your " miracle " drug.  I know Prednisone is a serious

drug, with many side effects, but it works wonderfully for me, and I hope to

never get off it.

 

Take care and rest as much as you can.

 

Hugs,

 

Barbara

From: Sheryl <Arrow31298@...>

Subject: Re: [ ] ? for Barbara on biologics

Date: Thursday, May 20, 2010, 2:26 PM

 

Hi Barbara,

 

May I ask why you are not a candidate for biologics?  I'm still undecided as to

what to do....  So any information you can share would be helpful.

 

Namaste',

Sheryl

[Guest guest]

Hi Barbara,

 

Thanks so much.  I forgot about the concern w/TB.  My doctor did say he'd have

to test me for it before beginning Enbrel.  Makes sense.  Right now I am in a

remission of sorts (minimal symptoms).  So doing pretty good....knock on wood!

Thanks for the kind wishes

 

Sheryl

 

Hi Sheryl.  When I was 32 I tested positive for TB.  Because of my age, I was

under treatment for it.  I became allergic to the 2 RX's I had to take. 

Therefore, I have no protection at all.  I went to a TB hospital to see a Dr.

there, and had chest x-rays all the time.  I did not have TB, but had the germ

in my body.  I know all the biologic's have a warning about TB.  I talked this

over with my Rheumy, and I am not willing to get TB in my lungs or my bones. 

Even though she wanted me to see a specialist before taking a biologic, I said

no, it was much too risky for me.  I so hope what I take now does the trick for

me for a long time.  I know biologic's help so many people and it is good it is

out there for us.  I am fearful because of that particular side effect.  If TB

didn't enter in the picture, I would definately try it.  I am willing to try

most anything to get this ugly disease under control.

 

I hope my information helps you.  It is not easy decision for anyone, but a good

chance it might be your " miracle " drug.  I know Prednisone is a serious drug,

with many side effects, but it works wonderfully for me, and I hope to never get

off it.

 

Take care and rest as much as you can.

 

Hugs,

 

Barbara

[Guest guest]

Hi Sheryl.  I am glad you are doing so well.  That is great news.  It is good

you can be a candidate for a Biologic drug.  The TB test is simple, and if you

are negative, how great you have so many options.

 

How long have you had RA?  What meds. have worked so well for you?  Where did

the RA hit you the worst?

 

Nice talking with you again.

 

Hugs,

 

Barbara

[Guest guest]

Hi Barbara,

 

Thanks for the kind words and thanks for asking   You all are so nice on this

list!

 

I've had RA for 19 yrs.  When first diagnosed I went on Sulindac.  That worked

for a while then symptoms returned.  We added Plaquinel, which again worked

great for a while then symptoms returned.  Next we added Methotrexate and that

was a wonder drug.  I was virtually pain free for a long time.  Until one day

I started coughing. 

 

The cough persisted for 2 weeks so I went to my family doctor who sent me home

w/antibiotics.  2 more weeks passed and I was getting worse.  Went back to GP

who told me I didn't have pneumonia but he wasn't sure what it was.  Gave me

stronger antibiotics.

 

2 more weeks passed.  By now I could not trudge slowly up a flight of stairs

w/o collapsing in a heap on my knees, wheezing and gasping for air for 10

minutes.  I was getting worried because the doctor really didn't seem to know

what was wrong and I had 2 young children and a farm full of critters to take

care of and I could barely get myself downstairs to eat a meal w/my family.  As

I'm laying in bed, pondering my plight, I remembered my Rhuemy's nurse calling

me and asking me if I had any of a grocery list of side effects.  Seemed to me

that coughing was one of them.  So I call my Rheumy and she immediately tells

me to stop the Methotrexate.  24 hrs later, I was back to my old self, like it

had never happened.  $500 later the pulmonologist confirmed that it was indeed

Methotrexate poisoning and that no permanent damage had been done. 

 

Bottom line is, that scared me so badly that I quit the other 2 drugs and have

not taken any conventional drugs for 12 yrs now.  Instead I have opted for

herbs, vitamins, homeopathy, Reiki and just plain old toughing out the flares. 

Also for me, the weather plays a huge role so I moved to NM because I do better

when it's warm and dry.  Wisconsin winters were about killing me.

 

But as we all know, this is a disease that is relentless.  I've won a few

battles but it's winning the war.  I know I will have to do something soon

because I have a lot of joint damage and I have some major mobility issues.  I

can't afford to let things get much worse or I will be in a wheelchair.

 

RA started out in my feet, then my hands, then my wrists, then my ankles, now

it's in my right knee, right elbow and left shoulder.  It's usually not

symmetrical btw.  About the only place it hasn't been is in my spine and

neck.  Otherwise it travels around.  Worst flare I ever had I felt like I was

being microwaved in every joint in my body, and that the blood vessals were

going to explode!  Thankfully that one didn't last but a day or 2.

 

That was probably TMI.  Sorry!  But I think it's kind of encouraging for

people to know that you can have this disease long term and with really strong

flares and still function.   If I can make it this long w/o drugs for the

most part, those who have aggressive treatment can have a good quality of

life.  The other thing I've noticed is that I'm battling depression a lot

lately but that comes and goes w/no rhyme or reason.  You just have to know

that " this too shall pass " and stay positive.

Sheryl

 

How long have you had RA?  What meds. have worked so well for you?  Where did

the RA hit you the worst?

 

Nice talking with you again.

 

Hugs,

 

Barbara