I FINALLY got my Humira today!!!!!

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princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 4/3/2008 2:48 PM (GMT -6)   
Finally!  I verified that I will be able to get enough shots to do the recommended doseage, and I have been very ill (bad D after every meal) since last Friday, so I went in to my GI's today and got the first four injections!  People who say that it burns are not kidding!!  I had 2 needles and 2 pens by accident, so I got to see which was worse.  The pens seemed more painful to me.  I don't know if I will ever be able to inject it myself, but my MIL is good at that stuff, so I'll ask her to do the next 2.  My thighs feel a little sore but no major complaints yet. I REALLY hope this works!  I peeked at my test results and my blood work was all fine, my upper GI and SBFT said normal except for reflux in some valve.  I wanted to know more but the nurse said to wait till I see the doctor on April 10th.  I am so hoping the Humira "does it" for me.  I really am tired of nothing working.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 4/3/2008 3:32 PM (GMT -6)   
Thanks for the update. Please keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Old Hat
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Date Joined Feb 2007
Total Posts : 5191
   Posted 4/3/2008 6:40 PM (GMT -6)   
Good luck! Sending positive vibes your way ... / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 4/3/2008 7:33 PM (GMT -6)   
princesscolon, congrats! I just took my second 'shot' of Humira today. You are right, it burns like bloody hell, but for all its worth I stopped the bleeding after starting it and had normal BMs for the first time ina long time. The only weird thing was that after my first dose two weeks ago, I conked flat out asleep. I will know here ina few hrs if it will be the 'norm' for me..i took the 2 shots less than an hour ago. Let us know how you are doing!
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 4/3/2008 7:41 PM (GMT -6)   
Oh congratulations! I'm hoping this is your secret weapon :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/3/2008 9:11 PM (GMT -6)   
Thank you all. So far I haven't had diarrhea since the injections and I've been having it for 6 days straight!
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/3/2008 9:18 PM (GMT -6)   
Wow -- hope that is "THE" answer for you. Good Luck.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 4/4/2008 12:25 AM (GMT -6)   
OH I"m so glad you were finally able to get it!!   I am sending all GOOD vibes you're way..hopefully will be your miracle drug!!  Plz let me know how it goes,  you SOOOOOOOO deserve some remission time from this awful disease!!  
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 25 20 units daily, Novolog 10 8 5 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/4/2008 10:18 AM (GMT -6)   
Add me to the sending good vibes crew! Definately let us know how this works for you and I sincerely hope this will let you get your life back.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
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UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/8/2008 3:26 AM (GMT -6)   
Princesscolon,

I hope the Humira is still working for you. My husband has been on this drug for a month. It seems you got good results right away. That's great! If you don't mind, can you please give an update. It seems not many people are on this drug with UC. I would just like to compare notes. Thanks!

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/8/2008 8:57 AM (GMT -6)   
No problem, UC spouse. I like talking about myself! I have been keeping a notebook to take notes at the end of each day since Humira. I wish I would have done it years ago, because I get mixed up with how long I took what, etc. Well it's been 5 days since my injection. Yesterday I didn't have any bms, which was the first time in 2 weeks I didn't have bloody D. I saw the blood lightening yesterday morning but last night I saw more blood. Still no bms yet today. I had more energy yesterday and was able to get more done than lately. As for side effects, I have been having more headaches than usual and the welts are still there. I took Claritin the day after the infusion and Zyrtec the second day(for me, the Claritin worked better), now I am only applying hydrocortisone cream. The ones on my stomach are the most frustrating. Nothing else really, except I am terrifed of getting the next dose in 9 days, I do not enjoy having myself injected with hot lava but I will do it if it means I can get my life back! How is your husband doing? Did he get a rash at the injection sites? Any tips to make the injections less painful?
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 4/8/2008 12:01 PM (GMT -6)   
Hi, Longtime lurker, newbie poster here. I have been on Humira since the beginning of the year, and it has been good to me. I am still steroid-dependent however, so I am going in for a consultation with my local Wizard of Oz UC/Crohn's specialist, and may be increasing my Humira dosage soon. It took 4 weeks for me to notice significant changes, so sounds like you are doing great!

I found that after several weeks of shots, it gets a little bit easier. Take the pen out of the fridge 30-60 minutes before administering, as it burns slightly less when it is not cold. I also ice the injection areas for 15-20 minutes before, and that helps a bit too. I still get significant bruising, and sometimes a little rashy puffiness around the injection site, but it doesn't bother me much. It has gotten better over time. I am often VERY tired for the duration of the day after having an injection (not sure if it's psychosomatic or what), but then feel fine the next day.

I went through the first 2 months absolutely dreading the injections due to the burning pain, even though my husband does a great job administering them. I am finding that it doesn't bother me as much now, perhaps because I can tell that it is working, and I'm able to recognize that it's 10 seconds of pain in exchange for major improvements in my life. My dx is indeterminate Crohns/colitis, which is why I was able to get Humira easily. That's about the only good thing about being indeterminate, I think, LOL. Hope this helps, and hope your improvements continue!
Dx Mild Proctitis 7/06, Dx Severe Pan Colitis 5/07, Dx Indeterminate Colitis/Crohn's 10/07
Failed Asacol, Lialda, 6-MP, Rowasa, Entocort, and Remicade
On Humira since 1/08 with promising results, but can't get below 5mg Prednisone
Currently on 40mg Prednisone again, ack


sirpenguin45
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 4/9/2008 1:42 PM (GMT -6)   
When was humira approved for UC? I have a family member who works for Abbot and she said that it wasn't approved for UC. Are some doctors using it anyway? That's great news for you! Hopefully it keeps up!

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/9/2008 3:42 PM (GMT -6)   
It isn't approved for UC yet. I got it for Psoriatic Arthritis. Thank you for the well wishes! I had been flaring pretty badly, so I can see a difference already.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 4/10/2008 9:39 AM (GMT -6)   
Yay Princess!

I agree you should let the shot get to room temp before you take it. Also, I am finding it less painful poking it in my stomach, I guess I have more fat there :)

I think Humira is really working for me. I am finally at 2 mgs of Pred and I see myself being off it by the end of the month FINALLY.
32 year-old female
dx-ed in 2007
Prednisone- down to 5mg
Humira
Asacol
probiotics, no sugar for a month experiment!


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/11/2008 1:55 AM (GMT -6)   
Princesscolon, thanks for sharing! I am glad you are doing better. My husband is doing ok.Unfortunately, the Humira hasn't made major improvements for him yet. When he first took Humira, his urgency and blood decreased. The number of bms decreased a bit. But, now he is back to where he was. Let's see, we're keeping our fingers crossed. He doesn't seem to get a rash on the injection site. If he doesn't inject it properly, then it burns him. Are you sitting down when you inject yourself? My husband sits down and injects it on his tummy. He grabs all of his tummy fat(which is not that much) in one area tightly. Taking out the meds. ahead of time helps too, as another person posted. You can ice the area first to numb it before injecting. I hope it is getting less painful for you.

My husband acts like it doesn't hurt, then again maybe he's just trying to be macho;)

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 4/13/2008 1:35 AM (GMT -6)   
Congratulations on getting Humira.
I've been on it since Jan 1st of 2008. Initially it was working great but when I started tapering off of the prednisone I started flaring again.
I was always on 20mg. I tapered every two weeks. I went to 15, then 10 then 5 and was doing great. When I got to 2.5mg I started flaring.
My GI said that we probably tapered too fast since I've been on prednisone for so long.
We are now doing a very slow taper. In the past I was never able to get below 20mg of pred without flaring.
I'm doing great now on 10mg and in two weeks I drop down to 7.5mg.

I use the pen and it did sting at first. Using ice on the injection area helps.

I've gotten used to it. I inject my stomach (which has extra padding from the prednisone side effects) and don't even use ice anymore. Faster & easier than brushing your teeth.

Hope everything goes well for you.

Doozer
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/2/2008 9:57 AM (GMT -6)   
Hobo,
I'm new to this site so hopefully I'm posting this reply properly.  If not, sorry in advance.  I'm trying to help my father-in-law with his Crohns.  He is currently on Humira and Prednisone also.  They are trying to step down his prednisone but he is having huge flare-ups.  Could you possibly detail the final, slow prednison taper they used on you (how much for how long) beginning at 20mg ?
I greatly appreaciate it.
 

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 8/2/2008 10:04 AM (GMT -6)   
I'll try to remember what I did:

I went from 20mg to 15mg of Prednisone. Stayed there for a month. Then went to 10mg. Stayed there for two months. Now down to 7.5mg. I have been here for about 10 weeks.

I'm doing pretty good but I wish I was doing better. I have been seeing my GI for about three years. I think it is time to get a second opinion. I am going to start looking for someone in the Chicago or Madison area.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/2/2008 11:48 AM (GMT -6)   
Sirpenguin, most GI's will give Humira off-label to UC patients because the research so far has been very positive. The usual issue is whether the insurance will pay. A lot of health insurance policies specifically say non-FDA approved treatments are not covered. In that case, Humira coverage would be denied, and very few people can pay for it themselves.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 8/2/2008 12:38 PM (GMT -6)   
Good luck! I hope this works for you.
32 year-old female
dx-ed in 2007
Humira
Asacol
probiotics
in remission- finally!


Doozer
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/3/2008 7:40 AM (GMT -6)   
Thanks Hobo !!!!

Doozer

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