Starting Humira for RA - Advice please

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Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 8/4/2007 5:01 PM (GMT -7)   
Hi all:

I'm Barbara and I usually post in the lupus room. I've had lupus for 19 years and my lupus is pretty severe. I've tried all the drug to treat lupus, even including cytoxan infusions, and rixtuan infusions. I however, had a genetic disposition for a rare blood cancer called MDS and taking the cytoxan only just pushed me over the edge with that. So now I've got an blood cancer that can't be treated except to attempt to do a bone marrow transplant.

I'm sure you're wondering why the heck I'm posting here. Four weeks ago I had some lab work done and then repeated 3 weeks later. My RA factors were negative but my CCP came back positive both times. My Rheumy wants me to begin using humira as soon as my surgical wound heals a bit more. I'm already taking the max dose of Methotrexate weekly.

If anyone could offer me some advice, insight, etc. I'd greatly appreciate. I'm having to say I'm really sick of all this stuff. I've been told I'll never improve from a cancer side and will only continue to worsen daily as my bone marrow continues to fail me more daily. I was adopted as a child so I don't have a donor match yet for a potential transplant. Anyway, any help you can offer would be most welcome.

Thanks,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 8/5/2007 1:59 PM (GMT -7)   
Hey there Barbara.. welcome to the Arthritis side of the forum.. I'm so sorry to hear about your recent diagnosis of MDS... Let me look some stuff up, and I'll be back here soon.. Just wanted to stop in and say hey, and that we are here for you.. hang in there...
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


Keah
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Date Joined Nov 2003
Total Posts : 7314
   Posted 8/5/2007 7:05 PM (GMT -7)   
Barbara, Wow, that's a lot to have to contend with all at once. I'll be hoping that you find a donor soon. Is there any way that they can do an autologous transplant from your own stem cells?

I've been using Humira since Feb and it's very easy to use. It's one quick injection a week for me, although the usual dosage is every 2 weeks. I hope this gets you some relief. Other than that, I'm not sure what else to tell you. Do you have any specific questions? I'll be happy to answer whatever I can.
Keah a.k.a. Wormy
 God helps those who help themselves.
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elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 8/6/2007 5:03 AM (GMT -7)   

Hi Barbara!  As if you needed to deal with RA on top of your lupus and MDS?  I'm sorry to hear of your recently added dx.  I have been on humira for RA.  I tried that before starting enbrel.  I only took it for a couple of months, though.  It didn't help me much, but when I went on enbrel I had to take it for a good 6-7 months before it kicked in.  These drugs work very very slowly for me; for others they work much more quickly.  I would say that patience is a necessary trait to exercise with the biologics.  Of course, since you're taking mtx already, adding a biologic like humira may reap immediate benefits.  I took enbrel by itself for almost 9 months before I added mtx.  Once I added the mtx, even a small dose, I had 100% relief within 3-4 weeks.  Something about the combination of those drugs works wonders for people. 

One thing I'm curious about--I've read that Lupus patients should be a bit more cautious with the biologics, as they can produce lupus antibodies, and/or worsen lupus.  Has your doctor considered prednisone (I know, not what you want to hear) prior to deciding on a specific biologic?  Is your lupus well-controlled?  Perhaps if your lupus is under control, it would be a smart move to put you on a biologic.  In any case, I wish you the best and keep us posted on how you're doing.  Welcome to the arthritis forum.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/6/2007 8:20 PM (GMT -7)   
Hi Elcamino, Keah, and Ducky:

Thanks for your welcomes to the Arthritis forum. First off to answer Elcamino's question, I've been taking oral prednisone for 6 years now. I've been up as high as 100mg daily. However, if you averaged out how much I took daily over the 6 years, it would be about 35 mg daily.

All I know is that I hurt all the time. That I'm so totally wiped out sleep like 18 to 20 hrs per day. I have a fairly high tolerance for pain, but I need and do use pain killers. I'm allergic to morphine and other various narcotics and basically can only tolerate Demerol. I take anywhere from 50 to 200 mg at a time. When my pain is so bad I can tolerate it, then I either go into the ER or I'm admitted to the hospital and give IV Demerol.

Did you have any side effects from the Humira? Does it bring you WBC down low? Just overall how will I feel taking this medication. How has it made a difference in your life, ie, lessen pain, stiffness, etc. I'm not really up on RA I know most things about lupus and MDS. I just would like information about RA and what it does to a person. How much is it like lupus? I'm kinda looking for a crash course on RA. Any help anyone is willing to give, would be greatly appreciated.

Take Care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/7/2007 8:52 AM (GMT -7)   

Hi Barbara,

I'm sorry to hear you're having to deal with so much pain--it shouldn't be that way.  In answer to your question about humira and WBC, yes, I believe it can lower your white blood count--I know that it did lower mine which is why my rheumy was so quick to switch me to enbrel.  But any of the biologics, and mtx for that matter, will also lower your wbc.  They would just have to keep a close eye on you. 

RA pain can be intolerable by itself, but with your lupus and MDS I cannot even imagine how awful you feel.  I pray that they get your RA under control, at a minimum, soon.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


LisaF
New Member


Date Joined Aug 2007
Total Posts : 1
   Posted 8/8/2007 6:44 PM (GMT -7)   

Hi BArbra

 lets chat iwas on Humira for awhile it did not help me        I could talk to youabout other treatments i am on

if you let me know when you are on line we could chat im just learning the computer so bear with me    lisa

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/18/2007 9:52 PM (GMT -7)   
Hi Lisa:

Sorry I'm so late in responding. I've been in the hospital up until Thursday, so I've been home 2 days now. I'd love to chat with you about the treatments you've tried. I'm thinking I'll be starting my Humira in about 10 days or so.

I'm normally in the lupus chat room daily at 1pm EST. If you're able to stop by at that time I'd really like to talk with you. If you can't make it at that time, let me know a different time and I'll meet up with you. Hope you're having a good weekend and a pain free one at that.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

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