Humira question/issue

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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/7/2006 6:34 AM (GMT -7)   
I have been on Humira for 6 weeks getting ready for shot 4 tomorrow. I began to see a great improvement within a week of my first injection and it has gotten more pronounced with each injection. It is helping greatly with the back pain that I was told by many doctors nothing except narcotics could be done to help. I hate narcotics and so have suffered instead. Now I am having several hours a day where my back is almost normal. So that everyone can understand I have systematic lupus, psoriasis, probable fibro, and am being watched for possible RA. They know I have osteoarthritis and lupus arthritis but aren't sure if I have psoriatic arthritis or RA or both. We have to wait and see but as at least one of those 2 kinds of arthritis is a problem my rheumy started me on Humira because NOTHING else was helping. I take plaquenil 200mg 2x day and Celebrex 200mg 2x day plus Imuran 150mg day. I take other meds for allergies and my stomach but these are the ones that were expected to help the inflammation and joint pain. I hope this background helps.
 
The thing is for about 2 weeks I have been very tired. Worse apparently all the color drains from my face- even my lips every so often scaring those around me. Hubby is very worried. Yesterday I terrified a Meijer employee. I see my rheumy tomorrow and am very afraid that she will hear this and take me off Humira. I cannot stand the idea of going back to the pain levels I had before. Yet, this is one of the symptoms that could very well get the drug yanked away from me so fast my head will spin. The thing is I have to tell her because it could indicate a serious problem and thus I will need blood work but I keep hoping we can counter act this with a simple medication or vitamin rather than yanking the one thing that seems to be working.
The thought of going back to barely being able to stand several times a week and verging on tears when I walk most days because of the pain does not appeal. I wish I knew what was causing this problem and if it was an easy fix.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/7/2006 7:12 AM (GMT -7)   

Redrose, I'm glad you're finding relief with the humira.  However, you do need to be careful with it.  I took humira for 4 weeks.  It didn't honestly do a lot for my joint pains, if anything at all, and I also became very very pale, tired, and washed-out.  Bloodwork revealed lowered blood counts, which evidently Humira was responsible for.  I was switched to Enbrel, and have not had any similar problems.  For some reason, Humira affected my blood counts more--it does work in a slightly different way than enbrel. 

Definitely mention this to your rheumy.  Humira has been known to cause serious blood problems.  Even if you have to stop taking Humira, keep in mind there are several different tnf-inhibitors available and everyone reacts differently to all of them.  What doesn't work for some, works for others, etc...  Enbrel, which is also an injectable, may be just fine for you if Humira doesn't work out.

Let us know what your rheumy says.

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


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/7/2006 7:22 AM (GMT -7)   
Hey Redrose... I'm with elcamino... make sure you talk to your rheumy about this... you listed that you have psoriasis... but the rheumy wasn't sure if you have psoriatic arthritis... Do you have pitting in your nails? Also, where is your pain located? Is it in your fingers/toes? What about your back? You said that your back hurt, but where in your back? Lower/Upper? Hang in there and let us know how you are doing...

Duck
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

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/7/2006 8:08 AM (GMT -7)   

Ducky, I tried to reply but something weird happened and my post wouldn't go through. I don't know if my nails could get pitting as they are so thin and peel. They bend and rip if I try to grow them out and often get white spots/lines/swirls. My back is most painful from the mid-shoulder area to the bottom of the rib cage area, then in the way low back, and some in the neck. My feet and hands swell and are painful. I have arthritis in all the small joints, knees, hips, elbows, even jaw. Pretty much my shoulders seem to be the only area with little to no swelling that is obvious. When the swelling is pronounced the joints affected are red and warm to hot. My skin psoriasis cleared completely during my second shot and the dermetologist who diagnoised it said it was VERY BAD and she gave me topical steroids yet they were no doing much. My rheumy said we will have to wait and see by the type of bone/joint damage we see over time if this is psoriatic arthritis, RA, or both. She just knows that it looks like one of the two because the cartilidge is being eaten away from my joints.

I thank you both for your replies and the info. I chose to take Humira despite all the risks because we had tried everything else I am able to take. My b-vitamin levels mean no mtx for me. My husband says if I don't tell my rheumy what is happening he will call her himself. He expects a full report on what happens and is said. I had already decided to discuss this with her because I know how dangerous the blood issues can be and I am prone to low red cell counts with normal hemoglobbin and hemocrit levels. For the last 2 years the red cell count has been high so I wasn't too worried. Now I am very afraid of losing the only thing that has helped.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/7/2006 8:29 AM (GMT -7)   

Redrose, you mentioned that you had already tried everything else before trying the Humira.  Have you been on enbrel already?  What about remicade, or even the new tnf-inhibitors that have just been approved ( I forget the names)?  I understand about the mtx, but I got the impression that Humira is the only tnf-inhibitor that you've tried so far?  We're very fortunate in that two new drugs in addition to the original tnf-inhibitors (enbrel, remicade, humira) have recently been fda approved for RA (orencia and something else?).  I don't know what's been approved for psoriatic arthritis, but I think the drugs for RA and PA are pretty similar. 

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/7/2006 8:40 AM (GMT -7)   
elcamino, Sorry I meant everything short of chemo or TNF inhibitors. I have been on so many different NSAIDS and even Prednisone without relief. I just has always thought chemo drugs would have been next before TNFs. I didn't even realize new TNF drugs had been approved. We are trying to avoid IV meds as it is very hard to get an IV line to stay on me- they usually blow within 24-32 hours. Worse if the medicine is harsh they usually last less than 6 hours. I also have very few veins that can handle an IV to begin with and it takes weeks for them to heal. I guess by everything I likely meant many of the lupus related drugs. See for the longest time we thought this was all lupus and that if we could just control it I would be fine. Now we are talking 2 maybe even 3 arthritis causing autoimmune problems. Kind of scary for me. Especially when my rheumy jumps from moderate medications to big guns so fast.
 
I guess I feel like I have been tried on a million and one meds and thus it must be everything when we have basically been doing anti-inflammatory and steroidal meds. I insisted on getting off the steroids because my bones show signs of thinning. Otherwise I think she would have tried putting me back on them at a higher dose.
 
I need to remember we haven't tried everything and that even though I feel like someone's science project that there are so many other things we could try I likely do not know even a fraction of the possibilities. I have just been so wrapped up in how my life has fallen apart because of what these arthritis diseases are dong to me. Humira is approved for RA, PA, and AS. I think Embrel is as well, no clue on Remicaid.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/7/2006 9:41 AM (GMT -7)   

Enbrel has been proven the most effective against PA... Then Humira, Remicade, Orencia and Kineret (sp?).. Since my rheumy diagnosed me with PA, he wanted to start me on Enbrel first.  I haven't taken any other biologic other than that, I have also never take methotrexate or plaquinel.  He said that if I didn't tolerate the Enbrel, that he would try me on the Humira, but it wouldn't be as effective as the Enbrel.  Luckily I have tolerated the Enbrel just fine... I have however, taken just about every NSAID out there.  eyes

In addition to regular arthritis symptoms, there are also 5 different types of Psoriatic Arthritis... Check out this website.. it outlines it rather well... It helped me to understand that a lot of my problems were actually the arthritis, instead of a bunch of separate issues... cool

Good luck to you and let us know how you are doing... Duck tongue


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

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/7/2006 10:01 AM (GMT -7)   
Also, from what my rheumy told me... since I had psoriasis, and my pain/swelling had affected my toes/feet/fingers/wrists and spine, it was PA. He did x-rays on me, as well as bloodwork, but said that if it was RA, my bigger joints would be affected more so than my smaller ones... I had the pitting in my nails too though.. my nails are thin also, but it looked like someone took a pin and dented them.. good luck
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

smhiles
New Member


Date Joined Apr 2006
Total Posts : 12
   Posted 8/8/2006 9:11 AM (GMT -7)   
I too, have been on many meds for RA and FMS. I am still on 15 or 16 types of meds now.  The TNF inhibitors Enbrel and Humira worked for me but then I developed Multiple Sclerosis.  My RA has been crazy for the last 7 months, I have been on and off, mostly on prednisone for the last 8 years, and have gained 70lbs since. I will begin my first Rituxan infusion tomorrow for RA, I will still be on the mtx and hopefully taper off the prednisone, my rheumy said he hopes it will quiet my RA and FMS. I saw my MS specialist today and she said I can get off of the Copaxone injections for now, because they are studying Rituxan for MS also.  So, hopefully this infusion will take care of all three of these diseases.  Especially, if nothing else is to get off of the prednisone.  Rituxan is used for NonHodgkins Lymphoma, so I am excited for some relief, it will take 2 infusions in 2 weeks.  Has anyone else been on Rituxan that can share their experience? I know everyone is diferent as will the results be, just wanted to get a feel on it.
smhiles tongue   :-)

Dx'd RA, MS, FMS, CTS, CFS, Hypothyroidism, Dep, Migraines, Optic Neuritis.
 
still i gotta keep on smhilen' 
 
Many smhiles 4 u.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/8/2006 10:19 PM (GMT -7)   
So I saw my rheumy and got some good news. She said that she does not think what I am experiencing is from the Humira- she said it doesn't fit because the paleness comes on suddenly and fades if I rest. So I get to keep taking it plus we are lowering my dose of Imuran to 100mg from 150mg. Even if I can't get completely off it would be nice to take less. She said the fatigue and paleness and even the near fainting is likely from a combination of issues- 1. I feel better pain wise so I do more and likely don't realize how much more 2. The heat and change from a/c areas to outside are hard on all with AI issues like lupus, fibro, RA, etc.... 3. I have very nasty allergies to just about everything you can be allergic to environmentally and local pollen and pollution measures have been high as has the humidity (humidity encourages mold spores and mildrew to accumulate in the air) and 4. I seem to respond very baddly to ANY kind of stress. So I guess I need to be careful about my activity level, limit my movement between a/c areas and the outside- heck limit outside period, avoid when possible allergy triggers, and try and lower my stress levels. Wish me luck. She also said that lowering my Imuran might help. She is worried we may be pushing too hard on my immune system.

Also she has decided that I have spondylitis in my spine and that lends credence to the Psoriatic arthritis theory but that I could still have sero-negative RA overlap with lupus because I have symptoms of all three- lupus, RA, and Psoriatic Arthritis, but for insurance she is labeling me as Systematic Lupus and Psoriatic Arthritis with spondylitis. So my diagnosis list grows again. At least this time I am finding ways to help. She also said that the treatment for RA and PA are identical or nearly so. So which ever it is doesn't really matter because the only way to know for sure would be to allow the disease to progress and see which end result the damage to my joints is because PA and RA end with 2 different destruction patterns in the joints. No way are we gonna let this progress.

Further she is VERY PLEASED with the improvement. She loves the level of progress she is seeing and want to keep me going closer and closer to remission.
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