Not sure about going on humira now

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crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 7/10/2010 2:12 AM (GMT -7)   
Hi , well I went to see the GI yesterday and he finally said I needed to be on some sort of medication and has suggested Humira I was dead excited at the time but, now  have read about it and what I have to do (self inject) I really don't think I can do it. I hate having injections  the more I have the worse the fear of them.
 
The thing is when I was 13 was given salazophirine then after a resection at 26 I was on no meds for 15 years (my choice thought i knew better) Then in jan 09 the surgeon had me on remicade for the fistula but, I had a reaction then after having surgery for the fistula and 4 small resections in the small bowel  they gave me asacol and pentasa but couldn't get on with it headaches sickness  and now the GI is putting me back on a powerful drug when I haven't tried the other drugs in between first such as imuran, 6mp, cipro do I really need such a powerful drug right now? I thought i would just be put on something else. Sorry for rambling on  Bev x 
Diagnosed with crohns at 13 now 43
Still battling with Doc's to get me on maintenance Meds only taking
Lomotil, 20mg citalopram,VSL#3 at the moment.

“I may not be where I need to be but,
I thank God I’m not where I use to be “


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 7/10/2010 8:44 AM (GMT -7)   
I always wondered how I would react if I ever had to take it. I hate getting shots, blood drawn in the first place. How on earth could I give myself an injection? Maybe current users have advice.
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 3x/day, 1,000 I/U Vitamin D3 2x/day, 1 Nature's Way Primadophilus Reuteri in the morning and 1 at bed time, 1 Coromega Omega 3 pack 2x/day
----------------------------------------------
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 7/10/2010 10:16 AM (GMT -7)   
thanks for your reply im not alone then! How long have you been on imuran? reading from your sig its obviously helped you, along with the other meds. if you don't mind me asking why  do the docs give you Imuran along with other meds, does the imuran only cover some of the intestine and the other drugs for the rest? (I'm not very clued up on the drugs as i  was out of the loop for to long) I think I'm going to ring the specialist nurse on Mon and say I would rather try something else which is orally taken. thanks again for your reply, and glad to see your feeling good long may it continue wink
Diagnosed with crohns at 13 now 43
Still battling with Doc's to get me on maintenance Meds only taking
Lomotil, 20mg citalopram,VSL#3 at the moment.

“I may not be where I need to be but,
I thank God I’m not where I use to be “


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/10/2010 3:37 PM (GMT -7)   
how do people self administer injectable meds? Practice, practice, practice. Ask the doc for a practice TB syringe with attached needle and practice injecting into an orange. Think this process is mostly psychological . . .mental preparation, acceptance and comfort with the the learning and accepting process. This type of discussion is helpful, finding friends and venting also helps. Ranting and raving is always therapeutic, I myself find great comfort in chocolate . . .but the more politically correct response is probably exercise and emotional support. So one more mental hurdle on the merry-go-round of life! Personally, I think that all of our issues serve to provide a human connection to others for care, comfort and compassion. So take care and let me know how the preparation for Carnegie Hall works out (ya know the ole joke . . .how do you get to Carnegie hall? Practice, practice, practice . . .Barb



Symptoms since Jan 2009, Dx UC vs crohns May 2010 but probably small bowel Crohn's dz, biopsies all "normal"

Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin

When the people fear their government, there is tyranny; when the government fears the people, there is liberty. Thomas Jefferson


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 7/11/2010 8:52 PM (GMT -7)   
Sorry for the delayed reply. I was on Imuran and Pentasa for a while. They even threw in entocort for a short amount of time. They were trying whatever they could to make me feel better. The tests always come back negative for inflamation, but I knew it was wrong. It wasn't until my last colonoscopy they knew I was in a flare with the tests still negative. For me it didn't seem like the Imuran worked very well, they kept increasing the dosage and I still had multiple BM and mild stomach pain. As they increased the Imuran I felt more and more unwell. The entocort worked for a short amount of time. Librax would just make me constipated, then a huge rush of BM a day or so later (not fun).

Imuran lowers your immune system in your whole body so it doesn't fight off infections, viruses, inflammation, etc as much. But is bad in the same way as you can get sick easier.
Entocort is a steroid and affects only part of the intestines (small bowel I think). Supposedly only a small amount is absorbed into the blood stream so less roid rage and moon face as compared to prednisone.

For me the saving grace so far is LDN (low dose naltrexone) and probiotics. I just added Propolis to my daily regimen. Hoping to see even more improvment!
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 3x/day, 1,000 I/U Vitamin D3 2x/day, 1 Nature's Way Primadophilus Reuteri in the morning and 1 at bed time, 1 Coromega Omega 3 pack 2x/day
----------------------------------------------
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.

Post Edited (CrohnnieMan) : 7/11/2010 9:56:19 PM (GMT-6)


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 7/12/2010 9:37 AM (GMT -7)   
From what I understand most people either go to the dr for their first shots or have a home health nurse come out the first time. They administer the first couple and then have you do it.
 
My mom was an insulen dependent diabetic so I grew up around the needles and learned at a young age how to give her the shot if I should need too, so I wasn't really that intimidated by it. My Humira starter pack arrived with all this info, a dvd, and a practice pen. I watched the dvd the first time and followed along with the practice pen, then watched it again and did it with the real pen. By reading this site, I was prepared for the "burn" of the med going in, but if you ice the area really well before and after, it's really not that bad.
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 7/12/2010 10:05 AM (GMT -7)   
I was on Humira and now am on Cimzia (B12 injections as well) so I've been self-injecting w/both a pen and a syringe for quite some time. Let the syringe/pen sit out on the counter for 20-30 min to come to room temp - this will decrease the stinging. Right before I inject, I inhale as much air as possible and blow it out slowly through my teeth as I'm injecting - it really refocuses me and by the time I'm done blowing the air out, the process is done. Each injection takes about 10 seconds and as far as I'm concerned, 20 seconds of sting is well worth it if it keeps this disease at bay. Good luck!
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