had my sig scope today/humira people feel free to give only positive vibes

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countess18
Regular Member


Date Joined May 2016
Total Posts : 108
   Posted 11/9/2017 2:55 PM (GMT -7)   
Well I had my scope and the rectum all the descending colon are now normal ,but there is an ulcer and fragility in the transverse colon. He now thinks I have Crohns and not UC. The fact that the transverse colon was normal last month and I am now developing ulcers while on prednisone warrants me starting the Humira. I am so tired and I just have to do it. I will probably start next week. I am afraid of frequent infections due to fear of antibiotics with C diff history. There really is no choice for me at this point. I asked about Pentasa but he said that wouldn't be enough.

Please send positive vibes...
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
very mild proctitis 5cm-20cm per sig scope in December 2016
sig scope Oct ’17 now w/left side UC - 1st 50cm normal due to Rowasa new inflammation 50-70cm -
currently on Rowasa enema in Pm, prednisone taper 5mg per week, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa,

Crispix
Regular Member


Date Joined Apr 2016
Total Posts : 21
   Posted 11/9/2017 7:08 PM (GMT -7)   
I started humira on 9/23, so I’ve been on it almost 7 weeks now. I’m feeling much better than when I started it, but I wouldn’t say I’m in remission yet.

I actually started it while I was hospitalized for a c.diff infection and a severe flare up. I continued to take the antibiotics for c.djff for about 2 weeks after starting the humira, and the infection has been gone since I stopped the antibiotics. I don’t think the humira effected my ability to fight the infection, and I thankfully haven’t had a reoccurrence since then.

I’ve only been on humira for a short time, and I’m sure other people who have been on it longer will chime in with their experiences. However, I can say that I haven’t been sick at all since starting it. My daughter, had a terrible cold a few weeks ago that lasted almost two weeks. Despite being covered in her boogers and having her cough in my face, I didn’t get sick. I thought I was maybe coming down with it, but I only ended up having a scratchy throat and a stuffy nose for a day or two. I also work in a school and have been around sick kids, and haven’t gotten sick. This may change, because as I said, I’m very new to the medication, but so far I can report that I don’t seem to be getting sick any more frequently than I did before I started it.

I understand your fear of antibiotics. After that c.diff infection, I plan to flat out refuse antibiotics unless someone can definitively tell me that I have a bacterial infection, and it needs to be treated with antibiotics. I never want c.diff again, and will do everything I can to avoid it.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10822
   Posted 11/10/2017 7:01 AM (GMT -7)   
Good luck, I hope humira is your solution and fast-track to a remission. I've been on remicade for 4 years now and haven't had any infections since starting it.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Urgency Roused "Oh the places I've pooed from culverts to shady bathrooms" the memoirs of a UC patient. Run, don't walk, to you local bookstore...

TotesMagotes
Veteran Member


Date Joined Mar 2013
Total Posts : 766
   Posted 11/10/2017 7:21 AM (GMT -7)   
Good luck countess. I understand your fears. I’ve been on remicade for almost 3 years and haven’t had any issues with infections or colds. I also had a c section and will have another in march with no problems...knock wood.

I have 2 young boys and deal with poop boogers colds etc and haven’t had any issues so far!! I wash my hands and play it safe when i can.

Good vibes and love your way.
Diagnosed Nov 2012 after birth of first child, Left sided UC
Remicade, 6mp
Visbiome 450 billion, prenatal vitamin, vit D, biotin, fiber, enemas only if needed

You gotta learn to dance in the rain

countess18
Regular Member


Date Joined May 2016
Total Posts : 108
   Posted 11/10/2017 10:34 AM (GMT -7)   
Thanks for replying and if totes can survive 2 c-sections on remicade then I can survive! I think I had more anxiety about the fact that I might have Crohns instead of UC. I had just gotten used to the UC idea and knew what my symptoms were etc. I have got to get my anxiety under control!

ipoop I did end up having urgency and diarrhea the other night after all so I was flaring. I had to up the prednisone to 25mg while waiting to start humira.

Crispix: I hope you can achieve full remission but recovering from C diff is a problem in itself with IBS etc. I never want C diff again either! keep me posted on your progress.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
very mild proctitis 5cm-20cm per sig scope in December 2016
sig scope Oct ’17 now w/left side UC - 1st 50cm normal due to Rowasa new inflammation 50-70cm -
currently on Rowasa enema in Pm, prednisone taper 5mg per week, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa,

Jayhawk85
Regular Member


Date Joined Jun 2017
Total Posts : 37
   Posted 11/10/2017 10:52 AM (GMT -7)   
Hi countess18,

I've been on Humira since July and no issues so far. My UC symptoms are very minimal since starting the shots. There are a lot of people on this site who use it or have used it so this is a good place to ask around.
M, 32, DX Sept 2009
Sulfasalazine worked for 6 years. Current flare for 2 years.
4g Sulfasalazine, 1g Canasa, 65mg iron supplement
Paleo/SCD based diet
Several months into Humira. So far so good.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/10/2017 11:04 AM (GMT -7)   
What's good is that you finally have a proper diagnosis. I hope the Humira is able to to control your inflammation and help you to a well-deserved and long remission.

Hugs,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1956
   Posted 11/10/2017 1:27 PM (GMT -7)   
I have been on Humira now for about three months and I guess you could say I am remission with slight problems occasionally if I eat something my body deems is bad for me (I have lots of allergies to food)

I like that it is an injection rather than having to take lots of pills every day. I also like that it has not changed my mood at all which happened to me with of the drugs I tried, I became quite anxious, so that's a big plus for me.

From what I have read some people state that the Humira injection can be painful, but I have found that not to be the case at all. I am using the syringe rather than the pen which I think might be the difference.

Best of luck to you!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10822
   Posted 11/10/2017 2:03 PM (GMT -7)   
Glad you're doing well Poppie!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Urgency Roused "Oh the places I've pooed from culverts to shady bathrooms" the memoirs of a UC patient. Run, don't walk, to you local bookstore...

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1956
   Posted 11/10/2017 4:09 PM (GMT -7)   
Thanks iPoop, yes its going well!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10015
   Posted 11/10/2017 5:01 PM (GMT -7)   
Poppie said...
From what I have read some people state that the Humira injection can be painful, but I have found that not to be the case at all. I am using the syringe rather than the pen which I think might be the difference.


It is! I used syringes for methotrexate and pens for Humira, and the syringes were definitely far less painful. You can control the speed at which the needle goes in with a syringe, which in turn allows you to control the pain; if it starts hurting, slow down.

Glad you are in remission.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

countess18
Regular Member


Date Joined May 2016
Total Posts : 108
   Posted 11/11/2017 7:32 AM (GMT -7)   
Thanks Quincy for all of your advice over the last year.

Poppie thanks for the tip! Do you get a choice in the Humira kit pen vs syringe etc?

NCOT - I have decided there is no positive in a chronic illness. It sucks!
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
very mild proctitis 5cm-20cm per sig scope in December 2016
sig scope Oct ’17 now w/left side UC - 1st 50cm normal due to Rowasa new inflammation 50-70cm -
currently on Rowasa enema in Pm, prednisone taper 5mg per week, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa,

irish4me
Regular Member


Date Joined Nov 2011
Total Posts : 128
   Posted 11/11/2017 9:54 PM (GMT -7)   
Countess, you can choose pen or syringe, just need to let your doc know. I have the pen and didn’t think it was so bad! Good luck!
Flared Sept 2017 - pancolitis
Prednisone - 15mg...tapering (started at 40)
4-Lialda
Rowasa - nightly
Imuran 75mg (restarted after nearly 2 years off of it) previously on Imuran 12/2011-11/2015
Humira (Ins denied Entyvio)
Multi-vitamin, Calcium, Vit. D

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1956
   Posted 11/12/2017 8:45 AM (GMT -7)   
ncot..thanks, yes it is a relief to be in remission!
countess..No, I did not have a choice, I was just issued with the syringe.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 208
   Posted 11/13/2017 2:27 PM (GMT -7)   
Countess18 - I have been on Humira since mid-December. I have had zero side effects and saw improvement by week 6 and felt like I was in remission at week 12. I started with bi-weekly had a bit of lingering inflammation and went to weekly. It put me into remission. I currently have what I consider a small flare and will likely add an immunosuppressant. I have to say that I love Humira. If you are in the US, sign up for the discount card and I highly recommend signing for the nurse ambassador as well. My nurse came to my house in advance, gave me literature, a practice pen, etc. She then came to my house when I did my loading dose and it was 7 PM. She called me all the time and gave me her cell number in the event I had a question or concern. I really miss her! She said I graduated since I was such a success and sent me on my way. There is also an app you can get for your phone to track your injection sites, lot number, etc. Super easy to use and my nurse helped me find it and set it up. Humira also will send you a large sharps container and when it's full you can order another and they will send a return package, postage pre-paid to send your sharps back.

I have only had one cold and that was when I first started. I haven't been sick at all so everyone is different in that regard. Just make sure you wash your hands and you should be fine.

Couple of tips for injecting. Take the med out at least 2 hours prior to injection to let it get room temperature. After you swab the site with the alcohol pad make sure it is completely dry. Take your caps off, remember thumb on plum so you don't give yourself a shot in the thumb, grab the skin, take a deep breath, inject and slowly count to 10. It is so easy to do. It stings a bit, but honestly it's minor and only lasts a minute.

I found the stomach the best place to inject but tried the thigh also for my loading dose for a comparison. I thought the thigh was more painful but everyone's different.

Last tip, then I'll stop - if you have to get it from a specialty pharmacy order it the first opportunity you can. I can only get 28 days at a time and always order my refill at day 21 so I have ended up with a small stock pile in the refrigerator because I get one extra pen every month. It makes me feel better to have extra in the event of a pharmacy mix up, delivery issue or refill issue.

Best of luck to you! I hope this is your magic med and brings you to remission.

Post Edited (Mrs. Brady) : 11/13/2017 2:34:05 PM (GMT-7)


countess18
Regular Member


Date Joined May 2016
Total Posts : 108
   Posted 11/13/2017 8:44 PM (GMT -7)   
Mrs Brady

I am glad you commented on my post because earlier I saw your post about your flare and I got extremely anxious. I flare in the fall as well and was hoping to survive next fall if on Humira. Thanks for the positive reply ( I was almost afraid to read it) and for all of the tips. I really hope you can get back into deep remission! At first I was afraid of the drug, then I became afraid of it not working. Prednisone has made me a crazy person full of anxiety. I have already gotten a call from the nurse ambassador and she is great! She is coming to my house on Wednesday.


T
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
very mild proctitis 5cm-20cm per sig scope in December 2016
sig scope Oct ’17 now w/left side UC - 1st 50cm normal due to Rowasa new inflammation 50-70cm -
currently on Rowasa enema in Pm, prednisone taper 5mg per week, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa,

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 208
   Posted 11/14/2017 6:09 AM (GMT -7)   
Countess18,

My flare is mild in my opinion and the first since I started. I had a solid 7 months of remission and it was pure bliss! I forgot what it was like to feel normal. I think this is just a blip and I'll get back to the promised land of remission. I wish you the best of luck! Sorry my post was so long but I was so afraid to start Humira that I dragged my feet for a year before accepting the idea and starting it and I can honestly say that I wish I had started it sooner. Let us know how your loading dose goes, you got this!

Cheryl
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued
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