Humira: Week 6

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Minners
Regular Member


Date Joined Jan 2013
Total Posts : 178
   Posted 1/23/2013 5:38 PM (GMT -6)   
Ok, just did my 8th shot of Humira - started Dec 12th. Also finished my last 5mg of pred today so I guess it is just a waiting game now to see if it has started to work or not! I usually flare within 2-3 weeks of coming off pred! Finding it hard to stay positive and hopeful all the time!... And fed up with pred & imuran side-effects!!

How are all you fellow-Humira users doing?

jpstroop
New Member


Date Joined Oct 2012
Total Posts : 14
   Posted 1/23/2013 5:59 PM (GMT -6)   
I wish the best for you!

I'm in a similar situation. Started Humira in October. On entecort and sulfasalazine. Things are under control enough to taper entecort but ultimately decided to taper off the sulfa first, because the wife and I are trying to have a baby. Dr suggested, reasonably, no coming off both at the same time and left it up to me. Fingers crossed we conceive quickly so I can kick the steroids for good. Oh, and have a baby… (I kid, I kid :)

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/23/2013 8:05 PM (GMT -6)   
Hey Minners, hope you do well on Humira. I still take most of my meds. Keeps things under control. Still waiting for complete remission. I have little blips here and there. I take Humira weekly. Every two weeks wasn't enough. Much better with the Humira :)

Jpstroop, hope you and your wife have good luck conceiving . Hope Humira helps you too!
Faith
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

Minners
Regular Member


Date Joined Jan 2013
Total Posts : 178
   Posted 1/24/2013 3:53 AM (GMT -6)   
Jpstroop - That is great Humira seems to be working for you! :-) I asked my doc yesterday about entocort as I'm sick of constantly being on pred and if I flare up again I would have liked to have been put on entocort but she feels that as my pancolitis is so severe, it will not be strong enough for me. Best of luck with the conception and getting off the steroids!
 
Faithmac - I'm still on my 125mg of Imuran and Mezavant XL (3 per day) so I'll be on them for at least another year with the Humira I'd say. At this stage, I'm beyond worrying about what I'm on as I just want something to work.. I'm not even hoping for full remission - just to get to a stage where it is maangeable and not hospital time! Really hoping it works. I can see them putting me on a weekly dose too. I've probably asked you this before - but were your symptoms very severe when you went on Humira? I'm steroid-dependent at the moment so I'm anxious to be finished them now and see how things go.. Going to really try avoid all the bad food and sugary things that they say aren't good for us ! confused
24 yr old female; UC Pancolitis July 2011
Prednisolone - tapering from 40mg
Imuran - 125mg
Humira - Dec 2012
Mezavant XL - 3600g
Olive Oil - 1 tbsp daily
Probiotics - Udos Choice

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1006
   Posted 1/24/2013 6:43 AM (GMT -6)   
Went off Prednisone (my last dose was Monday morning-5mg). 2 shots on monday as well. I am really tired. But that seems to be the only side effect. I had a not great day yesterday, but it was still better than before Humira. I think it is working for me. Still not normal, but better.
I think about you guys all the time. I am hoping this works for all of us.
diagnosed with left-sided UC in 1997. (45cm)

8caps Colazal
1 nightly Rowasa enema
Humira (Jan 2013)
tumeric, cholinergic acid, calcium, potassium, magnesium, triple fiber, VSL #3DS, gluten-free diet.

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/24/2013 7:27 AM (GMT -6)   
Lemon, the tiredness goes away. Hopefully it goes away for you. Takes time to see results. You seem to have a positive outlook on taking it. That's great. Hope it works for all of us too!

Minners , I was pretty bad when I went on Humira . 35 cm of inflamed colon. Refused to take pred again. Maybe I should have done both. Went to the GI crying. Not a good day. I had blood , loose stools and lots of pain. He asked me if I wanted to try Humira . I would have tried anything at that point. In the back of my mind ,I had a tremendous fear of taking a biologic. When your feeling like crap everyday it doesn't sound as bad. I think most UC patients need weekly doses eventually. Had no problem getting approved .
For me pred was a temporary fix. Hated the side effects more then anything I got from Humira .
I'm not 100%. But much much better.
Hope all goes well for you with Humira :)
Faith
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

cbjonice
Regular Member


Date Joined Mar 2012
Total Posts : 48
   Posted 1/24/2013 8:08 AM (GMT -6)   
Tomorrow will be my fourth dose of Humira. The first three I got a horrible headache the day after. I had a two real bad headaches over the past week so hoping that is just a fluke. However, I actually feel like the Humira might be helping my UC. Today (so far) was the first day without blood in a long time. Again my fourth dose is tomorrow and I see my GI Tuesday. If we can figure out something for these headaches I will be real optimistic.

Minners
Regular Member


Date Joined Jan 2013
Total Posts : 178
   Posted 1/24/2013 8:36 AM (GMT -6)   
Thanks Faithmac! :-) Lemonehad, we seem to be at similar stages, although I'm two weeks ahead on humira! It definitely seems to be taking effect for you so keep up the positive thinking. I'd love for us to come on here and type that Humira has saved us ha! Cbjonice, would you regularly have headaches?! It is funny, I used to always get bad headaches before I got sick with UC and since I have been sick (Feb 2011) I think I have had maybe two headaches! Hopefully it is just a coincidence and you don't get another after your next dose! That's great the Humira is starting to help you too! Keeps me optimistic!
24 yr old female; UC Pancolitis July 2011
Prednisolone - tapering from 40mg
Imuran - 125mg
Humira - Dec 2012
Mezavant XL - 3600g
Olive Oil - 1 tbsp daily
Probiotics - Udos Choice

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/24/2013 9:31 AM (GMT -6)   
Hate to say headaches can be a side effect. I got them at the begining. Don't get them too often now. I think it's sinus headaches. Had them before Humira too. If you read all the side effect listed your bound to think you have some of those too!!!! Try not to read so much. The injections don't hurt me as much as some have posted. I think I have been on humira for about 8 months now. Wow!
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1006
   Posted 1/24/2013 9:33 AM (GMT -6)   
I got a really nasty headache on Monday (shot day) as well. But it was gone by Tuesday. Today, I feel fine. Went to the bathroom 4x this morning, but all were solid!
diagnosed with left-sided UC in 1997. (45cm)

8caps Colazal
1 nightly Rowasa enema
Humira (Jan 2013)
tumeric, cholinergic acid, calcium, potassium, magnesium, triple fiber, VSL #3DS, gluten-free diet.

Minners
Regular Member


Date Joined Jan 2013
Total Posts : 178
   Posted 1/24/2013 9:49 AM (GMT -6)   
I tend to not read the side-effects and not think about them as I don't tend to get them then - bar the pred moonface and imuran hair loss that is! I have always wondered, my BMs have never looked 'normal' as they did before I was sick.. Even when I'm on pred and functioning normal, BMs still always look 'medicated'.. Never look right.. Even though they are formed and without blood and mucous!
24 yr old female; UC Pancolitis July 2011
Prednisolone - tapering from 40mg
Imuran - 125mg
Humira - Dec 2012
Mezavant XL - 3600g
Olive Oil - 1 tbsp daily
Probiotics - Udos Choice

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/24/2013 9:58 AM (GMT -6)   
Lemonhead how do you split your colazal dose. We take same meds except mine are generic.
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1006
   Posted 1/24/2013 12:14 PM (GMT -6)   
Generic never worked for me. I take 4 in the morning and 4 before bed. I have to tell you that I just went to the washroom again (5th time today) and guess what was back....blood. Man, seeing that just puts all the negative thoughts back in your head. I am hoping it has something to do with my cycle. The stool that accompanied it was not good either. Grrrr
diagnosed with left-sided UC in 1997. (45cm)

8caps Colazal
1 nightly Rowasa enema
Humira (Jan 2013)
tumeric, cholinergic acid, calcium, potassium, magnesium, triple fiber, VSL #3DS, gluten-free diet.

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1013
   Posted 1/24/2013 12:58 PM (GMT -6)   
I go down to 5mg of prednisone tomorrow. Then I do my third Humira round on Monday. I am doing good so far. I am worried about going down on the prednisone. I keep having migraines. I think it is from going down so quickly on the prednisone though. I didn’t have a headache when I did my first four shots but I wasn’t tapering the prednisone then either.
30 year old female. 2007 diagnosed with UC, also have Hypothyroidism, Leukocytosis, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive advantage lactose defense, lomotil, klor-con20, started Humira 12/31/12

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/24/2013 1:21 PM (GMT -6)   
lemonhead, When was your last injection. At the begining I used to see blood here and there for the first couple of months. I used the mesasalmine enemas all the time. Still use them a lot. Had a little blood the other day. Little blips here and there. Better then a full blown flare. If I see something brewing I hit with my rectal arsenal LOL!!!!!! Cortifoam and rowasa generic or canasa. It usually gets better.
When it was close to the next shot I would see sometimes a little blood. Not always. Think positive!!!!
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4126
   Posted 1/24/2013 1:29 PM (GMT -6)   
i'm not taking my next shots of humira but i hope you guys keep getting better. my gut has been HUGE since i started it. my gas and bloating is so uncomfortable and i honestly don't know what to do about it. it's been making sleeping really impossible for me. i hope it goes away after it's out of my system because i've never had this before.
Joanna, 23
Current: 3-6 loose bms/day (7-8 on bad days) urgent/gassy
humira, vit D, coc. kefir, CLO, astaxanthin, b12 shots, spatone iron, vit C, colostrum, interfase enzymes,scdophilus
Diet: SCD/paleo. yogurt, broth, meat, coconut oil, greens, veggies, fruit
Tried: canasa, rowasa, entocort, pred, 6mp, remi, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL/Vit E enema, 8 FT, clay, aloe, slip. elm

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/24/2013 1:57 PM (GMT -6)   
I don't think it's from the Humira . Are you in a bad flare? Hope you get to feeling better!
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4126
   Posted 1/24/2013 2:07 PM (GMT -6)   
faithmac, no that's the weird part. i NEVER get bloating or lots of gas and my diet is the same. i know humira can cause severe abdominal distention so i'm assuming that's why i have it.
Joanna, 23
Current: 3-6 loose bms/day (7-8 on bad days) urgent/gassy
humira, vit D, coc. kefir, CLO, astaxanthin, b12 shots, spatone iron, vit C, colostrum, interfase enzymes,scdophilus
Diet: SCD/paleo. yogurt, broth, meat, coconut oil, greens, veggies, fruit
Tried: canasa, rowasa, entocort, pred, 6mp, remi, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL/Vit E enema, 8 FT, clay, aloe, slip. elm

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/24/2013 2:18 PM (GMT -6)   
Never read that, about the severe abdominal distention. I get that from certain food or fiber. Still searching for the perfect fiber that agrees with me. I get very gassy from it. Also get it when I have rectal inflamation. Lots of gas and bloating. So uncomfortable ! I know how you feel.
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1006
   Posted 1/24/2013 7:51 PM (GMT -6)   
The only fiber I can take it called Triple Fiber. Everything else gives me wicked gas. I did not read anything about abdominal distention either, but I would assume that it will gradually decline as the meds get out of your system. Have you tried gasx or anything? I think my gassiness is worse since starting Humira, but I can't say I have the distention. I hope it goes away soon.
Banana-did 6-mp do anything for you? If this doesn't work that is my next move until Vedoluzimab comes out.
diagnosed with left-sided UC in 1997. (45cm)

8caps Colazal
1 nightly Rowasa enema
Humira (Jan 2013)
tumeric, cholinergic acid, calcium, potassium, magnesium, triple fiber, VSL #3DS, gluten-free diet.

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/24/2013 8:28 PM (GMT -6)   
Today I didn't take any kind of fiber. I had no gas at all. Who know what will happen in the AM. Have to work tomorrow morning. What's in your triple fiber lemonhead? I need something to bulk thing up. Any ideas?????? Anyone. Acacia wasn't the answer!
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly

Minners
Regular Member


Date Joined Jan 2013
Total Posts : 178
   Posted 1/25/2013 3:44 AM (GMT -6)   
Hang in there Lemonhead, it is still only getting into your system. By the 3 month mark we should be well stocked up! Even if the Humira works, we prob will have blips as Faithmac describes as Humira is not a cure so it isn't going to 'fix' everybody the same way. As long as it controls my urges and crazy amount of bms I can live with that! :-D My doc said they'll eb putting me back on pred if I flare up again now that I'm off them! :-( I asked about entocort but she said she doesn't think it would be strong enough for me! Do you guys take fibre supplements?
24 yr old female; UC Pancolitis July 2011
Prednisolone - tapering from 40mg
Imuran - 125mg
Humira - Dec 2012
Mezavant XL - 3600g
Olive Oil - 1 tbsp daily
Probiotics - Udos Choice

Minners
Regular Member


Date Joined Jan 2013
Total Posts : 178
   Posted 1/25/2013 3:46 AM (GMT -6)   
Ps: Bananagirl, I'd go back to my doc if that severe bloating doesn't go away. The Humira shouldn't have caused that. Try peppermint and camomile tea for the bloating. I find the peppermint really works. I try to have 1-3 cups a day!
24 yr old female; UC Pancolitis July 2011
Prednisolone - tapering from 40mg
Imuran - 125mg
Humira - Dec 2012
Mezavant XL - 3600g
Olive Oil - 1 tbsp daily
Probiotics - Udos Choice

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4126
   Posted 1/25/2013 6:54 AM (GMT -6)   
i plan on seeing my doctor sometime in february. just haven't made an appointment yet. i've been doing the peppermint and chamomile tea but haven't noticed a difference. i'm gonna do the scd intro diet for a few days and see if that does anything. i'm not doing well at all.
Joanna, 23
Current: 3-6 loose bms/day (7-8 on bad days) urgent/gassy
humira, vit D, coc. kefir, CLO, astaxanthin, b12 shots, spatone iron, vit C, colostrum, interfase enzymes,scdophilus
Diet: SCD/paleo. yogurt, broth, meat, coconut oil, greens, veggies, fruit
Tried: canasa, rowasa, entocort, pred, 6mp, remi, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL/Vit E enema, 8 FT, clay, aloe, slip. elm

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1215
   Posted 1/25/2013 7:03 AM (GMT -6)   
Sorry your not feeling well! Hope your day gets better:)
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u., Biotin,B12
Dicyclomine 20mg as needed
Clonazepam 0.5mg
Humira started June 2012,now weekly
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