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09/21/2010 09:59 AM

New Meds, really scared

NicNak2009
NicNak2009Posts: 32
Member

Hi everyone....it has been a really long time since I have logged on! Hope all is well. Things have been pretty well for me. I see my rheumy about every 6 weeks to check up. I finally cut out the prednisone. I am only on MTX (highest dose) once a week. I still have pain every once and awhile, but nothing I can't deal with, because I REFUSE to get back on the Prednisone!!!! My blood work is fine. My inflammation levels are good, only slightly elevated. No visible damage to my joints either. So my big concern is the fact that I saw my rheumy last month and he suggested Humira. I don't understand. I am not in excrutiating pain, so why add more meds? I went for a TB test which was neg. Went back to my rheumy yesterday and he gave me a welcom kit for Humira and told me he was going to write me script. I basically told him I didn't want to take it and could deal with the pain. He flat out told me that people with RA don't die from pain. It's from other conditions associated w/RA such as heart disease. He said that the Humira is an extra step to slowing down any damage. I DO NOT like meds and try to take as little as possible. Does it sound like I really need Humira? I read a lot of posts from people who state they are only on MTX. Why can't I stay like that? There are so many side effects from the meds and I know it doesn't mean I will get the side effects, but it is still scary as heck for me! I am just wondering what some of your takes are on the subject of taking the next med. Thanks in advance!

Nichole

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09/24/2010 06:01 PM
bearlie
bearlie  
Posts: 1517
VIP Member

NicNak, these are certainly concerns we have to address. I have heard over and over that RA often takes 10 years off a persons life due to heart problems. I can also tell you that it is very important to try and stop the progression of this terrible disease.

You are wise to look for answers before you take this next step. Its likely that others on here are familiar with the drugs you're asking about so you should get some really good answers.

Please keep us posted about this important decision.


09/25/2010 07:31 AM
cella
cella  
Posts: 997
Member

NikNak

I know exactly how you are feeling...in the beginning, I questioned every drug...naproxen, plaquenil, prednisone, methotrexate, celebrex(have OA also)..

Then it was onto hydrocodone because the pain was so severe, and I had a had time even moving..anticipating each move because of the pain it produced...

Next, I was put on Remicade infusions....for 8 months..that did not control the RA....also very concerning side effects....

I am now on Orencia, with concerning side effects...

Not sure if its helping as much as it should as my blood work for sed rate and crp are still high out of normal range, and my level of wellness is not there yet...

Bottom line is, I know they have to stop the progression of RA because it does ultimately cause other health complications, but, if the methotrexate is controlling your RA, I would ask the Doc..why the Humira?.....I would ask the Doc.. to go over the bloodwork with you and explain what each range means for a person with RA....if you are in normal range, then why the next drug?....The Doc...can send you for tests to see if your heart or lungs are being compromised?.....

RA, leaves us all with so many decisions each day...

and what I have found is that it is also very individual in many ways....so, we make what we consider the best decisions for ourselves...the doctors try to make an educated guess....because there is no cure.....

I was scared, and apprehensive also...but my RA...took off and just having it a couple of years my knuckes swelled along with multiple joint swelling...and pain...so, I knew I needed more then the methotrexate...

I hope as you sift through the information, you are able to make a good decision , good luck..

Post edited by: cella, at: 09/25/2010 07:32 AM


09/28/2010 08:31 AM
SandraR2002
SandraR2002  
Posts: 675
Member

NicNak,

Since u are inquiring... I will give you my point of view. U can take it for what it is worth.

1. do research research research

2. do not take or do anything that you do not feel PEACE about (a doctor nearly killed me over his opinon... I did not feel peace about what he was telling me to do...but I did it anyway and nearly died in Feb b/c of his regime for RA)

3. listen to your soul

4. listen to your heart

5. get another opinion.

6. i know many ppl that take nothing for RA but all natural diet and supplements and are healthy....

7. it is your body and know what you need. Ur spirit and information will guide you.

This is what I am doing for me. This is where my spirit and the Great Physician led me... He may lead you another direction... but do not let a doctor think he knows more than you... EVER!!!

I learned the hard way... I had 3 doctors that my "gut" told me not to follow... but then found the right one and I KNEW in my spirit that he was the one to help me.... he is a doctor/ nutritionist....

Hugs n Luv~~~ Sandy

http://www.chronicfatiguehealing.com/search/label/healthy% 20eating


09/28/2010 08:32 AM
SandraR2002
SandraR2002  
Posts: 675
Member

OH... I have been dxed w/RA and CFS... the supplements and diet are linked to both but the site says 'chronicfatigue'.... but it's for RA as well. Sandy
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