I'm thinking of stopping Biologics

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starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 3/5/2008 2:57 PM (GMT -7)   
Hi all - it's been ages since I've been around and I apologize. I wish I could say I've been dancing up a storm and didn't want to rub it in... but no, that's not the case.

I'm ready to ask my rheumy to up my MTX dosage and get rid of the Humira and all of the other options of biologics I may have left.

I finally started Humira mid-January. The first 2 shots (2 weeks apart) made absolutely no difference in how I felt, however right after my 3rd shot, I finally started feeling some relief. Then I promptly got a cold (first one in 3 years).

Not once during all the time I was on Remicade (almost 2 years) did I even get a sniffle. I remember constantly getting colds and sinus infections whilst on Enbrel until I got my pneumonia shot (good for 5 years). I got the pneumonia shot 3 years ago.

So, I haven't had an MTX injection in 2 weeks and I had to miss my 4th Humira injection last week and I'm still not over the cold thing that is running rampant around here. To top it off, everything hurts precisely because I haven't had any medicine and no telling at this point when I'll be able to resume anything.

So, it seems that Humira acts similarly (for me) as Enbrel in its ability to help me attract every germ or bug around. I don't want to live on various antibiotics and assorted med's again and the Humira just takes too long to kick in and then doesn't last long enough to boot. I see my rheumy in 2 weeks and I'm seriously considering stopping the Humira permanently.

What do you think? I know we are all different, taking different med's, etc., however, if my MTX dosage had been increased between my reaction to the Remicade and the time I started the Humira, I think I could've managed way better than I am now. I am not a doctor and I know none of you are as well -- I'm just a frustrated patient. I'm so very tired of experimenting and getting sick and it's really depressing me.

Thanks for any comments or thoughts you might have.

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Started Humira 1/17/08, also currently taking .7ml (17.5 mgs) injectible Methotrexate weekly, 2 mgs Folic Acid daily


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/5/2008 3:20 PM (GMT -7)   

Hey there ~S...

Hhmm.. I can't say that I blame you given you're track record with these meds.. do you think that maybe is a bad cold/flu season?  I know it is here, and for the past 5 months, I've been sick more than I have in the 3 years I've been on Enbrel.. but everyone around here is, so I don't feel alone! tongue    You're in Cali right?  Northern?

Do you think just upping the dose of MTX will be enough?  What do you think about the other biologics out there? 


Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/5/2008 5:10 PM (GMT -7)   
I'm off all biologics now. My last Humira injection was the beginning of December. I was on biologics for over 3 years. Once I got over the severe reaction to that last injection, I started to feel better than I had in over a YEAR!

Unfortunately, that lasted only for 2 months. Right now I am in severe pain and really limited in my mobility because of enthesitis in all the knee tendons. My elbows are beginning to ache and the left biceps tendon is definitely inflamed. I am only on Imuran. The Imuran seems to be keeping my gut in remission but obviously is not working on the joints.

Personally, if I were in your situation, I would do the Humira when given the go ahead. As Ducky said, perhaps it is just the severity of this year's cold and flu season. Everyone around here has had horrid colds that take 2-3 [sometimes 4] weeks to clear. One of my daughters ended up with sinusitis and bronchitis from her flu - and she had a flu shot! Anyway, if you pick up another bug soon when on the Humira then you'll know for sure.

Then again, I know what you mean about experimenting with these different potent meds and getting sick from them. Been there and done that a couple times and it stinks! Hopefully your rheumy will be able to help you make a difficult decision.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 3/5/2008 11:51 PM (GMT -7)   
hi starrrn. good to hear from you sorry things are not going great as we hoped they were. it is so hard to figure out some of the benifits verses the deficits in our treatments sometimes and i think like ides just shared we get a placebo effect going off and then bam our bodies begin to ache...... it is funny for me for some reason i am healthier on the immunosypressants than off them???? i am sick when not taking them and never sick with colds on them? my rhuemmy told me the drugs are for some reason keeping my immune system in check on them and it goes on vacation when i am off them... like now i have a sinus infection! ugh. was suppose to strt meds this weekend again and now i have to wait!

so i guess you might be like me needing to keep you immune system in check like it was on the remicade? enbrel was ok for me but i wast on it that long before i had to go off for surgery. it is late but why did you switch bilogics? i am missing it in the post??? sorry tired maybe finally ... good thing cuz it is 2 am!

dont think i helped but i get the whole not sick on the first bilogic why the others not? different drugs? well hugs anyway..... yally

Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 3/6/2008 10:10 AM (GMT -7)   
Have you thought about Orencia? I had recurrent infections on Remicade. I've had one UTI and an upper respiratory infection in the first month or so of Orencia and have been fine since. It is a different type of biologic than the Remicade/Humira/Enbrel group, so it might work on you differently than those did.


Jeannie 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 15mg (RA); Metanx 5mg (RA); Orencia 750mgs (RA); Lunesta 2mg (as needed); Prevacid

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