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06-11-2017, 02:52 PM   #331
ronroush7
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Location: vienna, Virginia

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Second Stelara done. Fingers crossed!!!
Hoping the best for you

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
07-17-2017, 06:29 PM   #332
Tuff
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Join Date: Feb 2013
Location: Ontario

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I had my second dose on Friday. I could choose the stomach or the upper arm, so had it in the arm. No pain at all. For a few days prior, I had mucus and looser stools, but that has ended now. I wonder if I need to move to 7 weeks. I don't have a GE currently, so that could be difficult. No side effects and no Crohn's symptoms, other than those few days. Happily it seems to be working.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
07-22-2017, 06:28 PM   #333
jazzygirl52
 
Join Date: Sep 2011
Location: Springfield, Massachusetts

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Geez, where to start? I had colon cancer in 2011 and my large intestine removed and have an internal jpouch. I was diagnosed with Crohns years ago, also have had UC.

Went on Humira at urging of Dr at Baystate, it worked great for a few years then I develped plaque psorasis of my scalp and eyebrows and a few itchy rashes. SOO off that and then tried Remicade and Imuran for 6 months. It helped a bit not as much as humira. My diet tolerance was more limited. (on humira it was almost like normal people could eat with limited roughage). However Remicade kicked my BP up like crazy during infusions and my BP was borderline high anyway so we went off Remicade. I have bad osteoarthritis and it helped a bit.

Had to go on Budesonide /Entocort for few months and still on Imuran. Crohns healed pretty much but I am having some issues with IBD and inflamation in my Upper GI system and indigestion.

Dr and a consulting Dr think I should go on Stelara and see if it helps. I hesitate cause Cancer is in my family and I have had it. I am surviving on Imuran but not feeling great. On a white food diet mostly and if I cheat I feel it . Since they want the Stelara to use to heal the Upper GI issues, they do not know the effectiveness of Stelara on those issues as it was designed for the colon I believe.

They think I could enjoy a better quality of life (I am 64) and eat more regular foods.. gosh maybe even veggies...

Any advice? Experience? Input?

Appreciate it!

Thanks.
07-23-2017, 02:38 AM   #334
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Geez, where to start? I had colon cancer in 2011 and my large intestine removed and have an internal jpouch. I was diagnosed with Crohns years ago, also have had UC.

Went on Humira at urging of Dr at Baystate, it worked great for a few years then I develped plaque psorasis of my scalp and eyebrows and a few itchy rashes. SOO off that and then tried Remicade and Imuran for 6 months. It helped a bit not as much as humira. My diet tolerance was more limited. (on humira it was almost like normal people could eat with limited roughage). However Remicade kicked my BP up like crazy during infusions and my BP was borderline high anyway so we went off Remicade. I have bad osteoarthritis and it helped a bit.

Had to go on Budesonide /Entocort for few months and still on Imuran. Crohns healed pretty much but I am having some issues with IBD and inflamation in my Upper GI system and indigestion.

Dr and a consulting Dr think I should go on Stelara and see if it helps. I hesitate cause Cancer is in my family and I have had it. I am surviving on Imuran but not feeling great. On a white food diet mostly and if I cheat I feel it . Since they want the Stelara to use to heal the Upper GI issues, they do not know the effectiveness of Stelara on those issues as it was designed for the colon I believe.

They think I could enjoy a better quality of life (I am 64) and eat more regular foods.. gosh maybe even veggies...

Any advice? Experience? Input?

Appreciate it!

Thanks.
I do not believe stelara would increase your risk of cancer any more than imuran/remicade/humira. In fact I have heard stelara may actually be less risky than the others.
Sorry to hear of your difficulties. A PPI drug may help your upper inflammation as well if you were allowed one but not sure due to your osteo
07-23-2017, 11:41 AM   #335
jazzygirl52
 
Join Date: Sep 2011
Location: Springfield, Massachusetts

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Eleanor Rigby... what is PPI drug? I am on pantoprozole (sp?)

I dont know if my insurance would approve Stelara ...especially for upper GI ....but I can find out... they said they would start a case for it... if I could eat more and have a more dependable gut I would.....
07-24-2017, 08:49 PM   #336
jazzygirl52
 
Join Date: Sep 2011
Location: Springfield, Massachusetts

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I am starting Stelara, hopefully this week I will get the infusions. Can anyone tell me if you had any ill feelings immediately after the infusion or the next day. I was on Remicade years ago and got very nauseated during and after the infusion and was very tired the next day. I am hoping Stelara is as good as everyone is reporting it to be as I am have ran out of medicines to treat my Crohn's. Any info will be appreciated.

On Remicade I learned that the day after you were supposed to rest completely I can zap your energy and make you feel like you want to collapse
07-26-2017, 07:07 PM   #337
newdiagnosis
 
Join Date: May 2017
Just had my first stelara infusion today. How long until I should expect maybe some improvement in knee swelling?
07-26-2017, 07:41 PM   #338
my little penguin
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Stelera can take up to 6 months to work
Good luck
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08-06-2017, 04:35 PM   #339
jazzygirl52
 
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Location: Springfield, Massachusetts

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Had my first stelara infusion yesterday for crohns and off label upper gi issue. Had major side effects and had to go to the ER, numbness in my face, stiff upper back and neck, tongue swelling, and next day lip swelling. Two trips to the ER on Prednisone and benedryl for a week at least. I am now stating ALLERGIC to Stelara and not having another infusion. This one is a 2 month supply in my body.
08-06-2017, 04:53 PM   #340
Guerrero
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Very unlucky, is it sure they wont try a secondo infusion?
08-06-2017, 07:16 PM   #341
jazzygirl52
 
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Have not met with or talked to MY dr yet but based on this experience I do not want to try again. When I had Humira no problems. When I had remicade infusion they premed me with benedryl and tylenol. This time they had no premed orders and I told them I had previous orders with other drugs but dr did not order. Dont think that would have made a difference with the other side effects besides itching.
08-08-2017, 02:50 PM   #342
newdiagnosis
 
Join Date: May 2017
Had my first stelara infusion yesterday for crohns and off label upper gi issue. Had major side effects and had to go to the ER, numbness in my face, stiff upper back and neck, tongue swelling, and next day lip swelling. Two trips to the ER on Prednisone and benedryl for a week at least. I am now stating ALLERGIC to Stelara and not having another infusion. This one is a 2 month supply in my body.
Sorry to hear about the infusion reaction. It happens. For stelara infusion reactions are pretty rare.
08-09-2017, 05:34 PM   #343
aypues
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My doctor wants me to switch to either Stelara or Entyvio. She prefers Stelara for me though. I have been on a high dose of Remicade for the past 8 months and still have pretty active disease seen on double balloon enteroscopy and MRE. I'm only having a partial response to the Remicade as my CBC is fairly normal now, which was terrible last year, but my albumin has been declining again.

How are people doing on Stelara as compared to when you started? If you responded, how long did it take to notice an improvement?
08-13-2017, 08:11 PM   #344
jazzygirl52
 
Join Date: Sep 2011
Location: Springfield, Massachusetts

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So after having the stelara first infusion on 8/4/17 and getting the serious side effect allergic reactions mentioned above (swelling in tongue, numbness in lips and face, hard to swallow), and getting 2nd trip to ER on 8/5/17 as they came back after initial ER treatment of 60 mg prednisone and benedryl, was put on 60 mg 5 days/40 5 days, 30 5 days..etc weaning off. Well the 60 mg prednisone helped but had to take ativan to calm down. I tiered down to 40 mg Thurs,Fri,Sat and today Sun. I had EXTREME watery diahrhea constantly as of Friday morning to today. I was weak and not well. Got the covering GI on phone and he upped dose back to 60 mg and said i need to work with dr to tier down slower. And to hyrdrate like crazy or go to the ER and have them IV me and medicate me. ..... It helped a lot I think to go back to 60 mg. I did not plan on havin to be on prednisone after the infusion and now am on it for at least a month. ...

that part sucks. He wanted to talk about going on the Entyvio but I said I am on Imuran and the Stelarais a 2 months in my system and now the prednisone so NOT open to that right now. I really am afraid after this experience to go on anothe biologic.

But I will say the meds Stelara or Prednisone, cant tell, are helping my osteoarthritis in my two horrible knees, my back pain, and neckpain. And somewhat my stomach up til Friday.

I am pretty upset and depressed with being out of action for over a week and a half due to this and did manage to sneak a visit to my mom in the nursing home yesterday, but looking forward to getting past this and being able to continue doing my things that I need to do in life... Hugs welcome
08-14-2017, 02:36 AM   #345
Guerrero
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I hope you'll feel better soon. I heard entyvio induce less allergic reactions compare to remicade for example...
08-20-2017, 10:01 PM   #346
jazzygirl52
 
Join Date: Sep 2011
Location: Springfield, Massachusetts

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well currently have the stelara still in me (2 mo dose given 8/4) and been on prednisone since then due to the allergic reactions (numbness in side of face, swelling of tongue, numb lips, hard to swallow). Can't tell what is doing what inside except my aches and pains in my joints especially my knees and back and feet have been really improved. My stomach is not happy with the prednisone-- I have no large intestine so easy to throw off the stool looseness. I have had issues with severe diarrhea in downsizing the prednisone but hydrating and using imodium and citrucel fiber to thicken it. I am also still on Imuran.

Note, my medicare insurance and supplemental had a huge copay but a pharmacy I used for Humira that got my copay to zero has also been able to qualify me for a very very low like $38 copay now for Stelara.... they are in Springfield MA, Baystate Specialty Pharmacy. (I didnt qualify for Stelara help as I am on Medicare). So keep trying for help with copays. I have Crohns but this was for upper GI inflamation and mucus. I dont know how they wrote up the order to qualify it.

Can't even think about next steps. Entevo maybe if it gets bad. Not being able to eat anything except rice, white bread, turkey, chicken, eggs gets old....
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