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06-11-2012, 01:04 PM   #61
raechel
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I'm a little less than 3 weeks in and so far no real changes. I did have a great day this past Saturday, but that seems to be my norm. I usually have a really crappy week or two and then get one or two decent days before I start all over again with the bad... seems to just be a cycle for me. The good news is that abscess wise I seem to be doing alright now and have been able to finally stop the antibiotic I was on for over 3months.

How are the rest of you doing now? I'm dying to read an update :-)
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
06-11-2012, 01:38 PM   #62
Linn
 
Join Date: Apr 2012
hi!

doing well after a little setback last week. I was down to 12.5 on the pred and I think I got a little ahead of myself. I was fine during the day last Sunday, but sunday night my guts came unglued and i had some serious D.

Thought it was a flare but it seems like it might have been a bit of a stomach bug as my boyfriend came down with it too.

At any rate, currently at 17.5mg and the poops are hardened up again...even more formed than they EVER were on tysabri. i think if you've been on pred for 16 months at 40mg like me, a slow, gentle taper is key. probably not more than 2.5 mg a week once you get below 20.
06-11-2012, 01:46 PM   #63
skippy111
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THe news article David posted on the first page did indicate that the Stellara did seem to be effective against the Chron's even more interesting is that people who could not tollerate the Humira did well with the stellara,

but, there again, the market share of the Chron's patients is somewhere near $3 billion dollars so it is understandable why the other approved meds would lobby to protect their own market share..

I hope this works out.
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Check to see if any of the meds you are taking can intereact with another, just go to the Drug interaction section, it is free! http://www.drugs.com/

Crohn's /Anemia DX in 1991
Aspbergers/Depression/ADHD DX 2001

Past meds for crohn's
Prednisone/Azulfadine

Recent Meds While in Hosp for Crohn's/Depression
Flagyl/Cypro,Zofran Protonix, Prednisone, Lovenox
Celexa,Kolonopin, Ritalin
Current meds:
Prednisone,Celexa,Adderall,Kolonopin,Percocet
07-05-2012, 08:31 AM   #64
raechel
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Quick update on me... After my second injection I may have had an allergic reaction. I'm not really sure if it was enough of a reaction to keep me from getting another shot though. My eyes got really itchy, my tongue itched and throat just felt very scratchy. I took Benadryl and prednisone and it helped a lot. About 45 mins later my eyes and tongue were fine, but the itchy weird throat persisted. I actually woke up the next morning with my throat just feeling very dry, scratchy, and irritated. Within 2 days I had no voice. I went to my primary doc and she said it was possible the loss of voice was related to the swelling and irritation from the reaction. It is also possible that it was all a coincidence and what with being on an immune suppressor I just had a virus or something that happened to hit me then. I did not have any other symptoms sickness wise, no headache, fever, achy-ness.. ears and nose are fine...It is worth mentioning though my throat was snot at all irritated until after the shot . I had my voice back about 6 days later, and now I am 10days post injection and my voice is fine but throat is still a bit irritated and if I talk much it is worse. Any thoughts? Anyone else having issues after the shot like this? (I also woke up yesterday with a cold sore and havent had one of those in over 3 years so I'm thinking maybe the stelara is doing its job zapping my immune system.)

Overall my Crohn's symptoms have improved, but are not amazingly better.

How are you guys doing???
07-11-2012, 01:08 AM   #65
Ian2390
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update on me. My Crohn's is not significantly better after 2 shots. I still have bad D and blood in every stool. Will probably take my next shot but don't think this has really helped after being on the drug for 3 months. Might try IV steroids to see if that will put me into remission before my next shot. I am convinced I have an intracellular bacteria or virus that has not been diagnosed. When I get to Berkeley I am going to find a lab that works on this and start testing myself.
07-16-2012, 06:14 PM   #66
swing9cats
 
Join Date: Jul 2012
Location: seattle, Washington
Hi, I am currently in the Phase III Stelara study. I've noticed a HUGE difference. I have failed Remicade previously by having a horrible allergic reaction and I was afraid to take biologics. But I'm glad I did bc my CDAI score has come down and I would say I'm nearing remission (kissing the ground the doctors walk on at this point). I honestly felt like I was dying.

The first dose was an IV so that I wouldn't know if it was drug or placebo...I'm almost sure I got the real deal.

I had to wait 4 weeks for another injection, and I get one every 4 weeks. At least once every 12 weeks I do get the real drug. I've now had 3 injections and I've been part of the study since March. Its a 4 year study. All I know is that I improved enough to pass to the second part of the study and things are looking up. My score came down from 226 to 99. I went from going to the bathroom in excruciating pain nearly 15 times per day to only going once. Maybe twice. No pain. I do feel though I have nerve damage bc I still have pain to the touch of my back where my intestine is and I do continue to take pain meds.

I am looking forward to stem cell therapies and studies. I hear good things about Prochymal which should be hitting in a few years.
07-18-2012, 08:32 PM   #67
mommy1st
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My doctor is in talks with my insurance for approval for Stelara. I have tried Remicade in the past with a severe reaction ( serum sickness ) and have been on Humira weekly for the past few years. My Crohns has always been pretty severe, they are trying to heal things up so that I don't have to have my 5th resection. Just wondering if everyone feels like Stelara has helped more than not at this point. I'm just looking for a little advice. Thanks!
07-18-2012, 09:17 PM   #68
swing9cats
 
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I absolutely feel that Stelara > Remicade It is getting me closer to remission with SO few side effects if any. I had an extreme allergic reaction to Remicade and also ended up in the hospital several times with infection and Pneumonia. If you check on WebMD and compare the side effects its almost astonishing. I was so scared of taking another biologic after remicade. I only agreed to the study because I was SO sick, the next step truly would have been to remove my colon. I was so scared at the infusion time, that I basically had a panic attack...but the only thing I noticed when I know I received the real drug, is that I felt a little tired and weak with flu like symptoms for 1-2 days post injection. After that, day by day and noted in my journal that I keep, my frequency became less and less, also pain was becoming less. The rest is history. I have had zero problems on the drug. I plan to continue using it. Now on it since March so around 5 months.
07-19-2012, 08:17 AM   #69
raechel
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mommy1st- I go through ups and downs thinking the stelara is working, and thinking its not. Overall I would say my symptoms have improved. I feel a little sleepy after the shot, but not nearly as bad as I did with the Remicade. I'm definitely glad I gave Stelara a shot, but I do have to admit I worry that I'm allergic to it and kinda scared for my next injection. If this is the next thing your doctor is recommending and you can get it approved by the insurance I'd give it a chance if I were you. :-) Good luck.
07-19-2012, 08:15 PM   #70
mommy1st
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Thanks for the info, honestly if I wouldn't be working on my 5th resection I would probably have just opted to have surgery, but at this point I think that I will give the Stelara a try, well if my insurance will pay for it!
08-09-2012, 06:41 AM   #71
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How are you guys doing on Stelara? I have my evaluation shortly, can't wait!
08-09-2012, 11:36 AM   #72
swing9cats
 
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I'd have to agree with Rachael....I go through these ups and downs, but over all I am significantly in better shape than I was in March. In March I was going to the bathroom 6-10x per day...now I am going 2-3. I have far less pain and was also able to finally get off of prednisone. I wouldn't say I am in full remission as I still have some pain, but its far more manageable and if I watch what I eat, I can have symptom free days. I would highly recommend it while waiting for the next best thing. I am concerned about building up anti-bodies to it and it not working, but so far so good. Additionally, I asked what the next steps were if the drug were to fail...and there is a Vido study, and also a "worm" study (I'm sure most of us have read about eating the worm pills that make the gut lining increase mucosa etc...). In any case, I am pretty satisfied with Stelara and feel on a rating of 1 to 10 (10 feeling great), I feel about a 6 or 7...which is far better than the 2 I felt before. I'm not really bleeding although I do have those occasional days...and it is usually from either high stress levels or bad foods. I'd give it a shot if yoru doc. recomends it.
08-09-2012, 12:52 PM   #73
Lawyerboy
 
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Thats great Swing9cats. How long did it take the Stelara to kick in for you?
08-09-2012, 01:12 PM   #74
swing9cats
 
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I got my first dose in March. I as I am part of a study I'm not 100% sure when I get it...but I get an injection monthly, of which 1 in every 12 weeks is the real deal. So I started end of march until now..so about 6 months. Its not overnight...
I also felt "flu like" symptoms after the real injections, I thought...with a lot of fatigue and nausea. Also my feet felt swollen and stiff...but in the big scheme of things..thats really nothing compared to the misery of Crohns. I'd take that any day, adn its nothing that a bit of tramadol can't help
08-09-2012, 01:20 PM   #75
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Ok, so it is difficult to pinpoint when it exactly began working for you I guess. I am also on prednisone now and i need to taper but can't. Hopefully Stelara will help.
08-09-2012, 02:52 PM   #76
swing9cats
 
Join Date: Jul 2012
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Yes...that sounds about where I was when I got started. It will take longer if you don't start thats all I know. I was really greatful to get off of the devil drug prednisone over time. I know I felt a lot better in the first three months. I was very weak/tired after the actual drug I thought. Good Luck!! Crohns is a B*%@!. Keep us posted on your progress.
08-09-2012, 03:14 PM   #77
Lawyerboy
 
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Yes I know. Prednisone is helping me alot though. If I could not have prednisone I would be much much worst as I am currently. The side effects however are horrible, especially the psychological side effects. I will keep you posted!
08-14-2012, 06:29 PM   #78
Linn
 
Join Date: Apr 2012
Hey guys--
just wanted to send a little update.

So I've had two doses so far--one of 270 mg, and one 90 mg (that I gave to myself last month).

Well, I've put on 23 pounds of not-just-water, so that alone speaks volumes to how i'm feeling. I have a tendency toward nasty scar formation (i've already had one resection to remove 12 inches of bowel and stricture) and I can feel another one coming on with all the healing that's happening.

In spite of the healing, however, I'm still on 7.5mg of prednisone. I can't seem to get much below that without being symptomatic to the point of annoying (i'm a medical student, so not a lot of bathroom breaks, and a lot of time spent standing). I have an appt tomorrow with my GI--hopefully she'll agree to scoping me, the last time we did that (before the Stelara, in April) the scope itself was enough to treat the stenosis.
08-15-2012, 01:10 AM   #79
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Hi lynn, sounds like the stelara is working for you. Thats great right? What improvements did you notice besides being able to taper?
08-15-2012, 08:14 PM   #80
kromom1
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How often is Stelara given, and is it an IV infusion or injection? I've been receiving Tysabri infusions every 4 weeks now for 18 months, and it's not working very well anymore, so I'm considering trying Stelara.
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Lisa

Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
08-16-2012, 04:56 PM   #81
Lawyerboy
 
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In the phase 3 study the first dose is given through an iv and subsequent doses via injections.
08-22-2012, 05:44 PM   #82
Linn
 
Join Date: Apr 2012
Hi! Well, the improvements are systemic. For starters, I have tons more energy because I'm absorbing more of my food. It's not perfect--I have a bit of stenosis pretty low down which I'm getting dilated on monday, and as a result my bowel is a bit irritated right now. but stelara + 10 mg of pred right now = as close to a normal life as i could ask right now as a 4th year med student

its when i start to try and go below 10 that things get a little shady. it might be because i haven't reached steady state yet with the stelara, given its fairly long half life, but i have another dose coming up the first week of september so we'll see after that how low i can go.

the improvements really center around my being able to taper. when i'm on prednisone over 20 mg, my vision is terrible and i have to wear glasses because i get so blurry i can't even identify my friends coming down a hallway. i'm not crying my eyes out every 20 minutes which makes my boyfriend happy. and i'm not bloated up like a big puffy toad. i also stopped taking MTX which is nice because a.) i was going bald and b.) i was getting pneumonia every three months because i spend all my time in the hospital and am constantly exposed to tons of germs. i can tolerate the immunomodulation that stelara causes, but the MTX was just too much for me (my cough was so bad for so long that most of the attendings thought ii had TB) its better for my bones (and every organ system, really) to be off the pred so tapering is kind of ...everything, hehe.

one thing of note is that my fistulas are trying to heal, even without antibiotics. i was taking high dose flagyl and cipro for many years up until may, when it finally caught up with me and my feet went numb up to my shins. well, not numb per se; parasthesia is a better description. that is improving too now, which means it was the reversible type, which means it was due to the flagyl since cipro-induced neuropathy is irreversible. so we may try again with abx, just at a lower dose. but the fact that the fistulas are trying to heal--or even just not getting nastier--is a pretty huge check in the win column for me as well.
08-22-2012, 10:08 PM   #83
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Hi linn, thanks for replying. I am so glad for you that you have relief with the Stelara. Our situations seem pretty alike. I also have a sticture, in fact I have two. One in the transferum and one in the decending colon. And I am also a student not being able to taper the pred. I am on 40mg now and below 30 I would say I am not able to function at all. Today I am getting scoped again and I will hopefully also be getting my first dose of Stelara (no placebo I hope). Good luck to you and I am sure the dilation will do the trick. Strictures are awful!
08-24-2012, 12:57 AM   #84
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Just had a scope. The GI confirmed that my strictures are completely dissolved. I still have to endure severe bloating though; it is difficult to actually believe him.

I also got my first IV of Stelara or placebo. I experienced a somewhat metallic taste in my mouth during administration. Hopefully this implies I got the real thing!
08-24-2012, 07:32 AM   #85
raechel
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Thanks for the updates! I love reading how it is working for everyone else.

I had a period of about 2 weeks last month where I thought the Stelara may be helping, and I had a decent MRI, but then my normal crohn's pains returned so we repeated the MRI (enterography) last week. I just got the results. They are saying that my fistulas appear to have healed and there is no evidence of the abscesses (that I've had for quite some time). Inflammation wise, etc. the Crohn's appears to be worsening though. It is so weird, but matches how I'm feeling. My doc was hoping to get me tapered off the prednisone this month too, and is not going to now. I'm only @10mg so I guess I shouldn't complain to much. I'm just so tired of these tremors, mood swings, moon face, and feeling so HUGE. (Despite my daily sickness I am 25lbs over my normal weight). Plus, I thought a benefit of the prednisone was supposed to be energy, and I am not reaping that benefit at all. I am SO exhausted all the time.

Stelara was kind of my last try medicine wise before I decided to go all in for a stem cell transplant. (Insurance denied, but if I receive medicare in January like I should then they cover a large portion, and I am currently fundraising for the remaining amount). I'm glad it has done what I really needed to prepare me for transplant in getting rid of the fistula/abscess problem... but at this point I'm pretty decided that's about all its done for me and going to do everything I can to raise the $ for transplant. (Especially since every time I get the Stelara injection I have a slightly worse reaction and have to do a medrol pack and benadryl to keep my throat open...and I'm unsure if it is related but the last 4 days I have had headaches that keep me from functioning at all.. a dull headache all day long, and then random stabbing behind my right eye that makes me see spots... and the only thing that makes it better is laying down)

Sorry if this seems scatter-brained.. I feel like that's just me anymore,lol.
09-05-2012, 08:19 PM   #86
Linn
 
Join Date: Apr 2012
raechel, i'm really sorry to hear about your struggles. things haven't been smooth sailing for me either recently. i started having a lot of obstructive symptoms, and went in for dilatation. while they didn't see more inflammation than my scope in April, it wasn't exactly a gorgeous scope by any means...I have involvement right up to my anal verge now, which is as gross as it sounds (basically I don't have to go until the poo is ALLLL the way down and irritating the sphincter, at which point, I have basically no time to hold it) and even though I too am only taking 10 mg, I still haven't recovered from the bowel prep--so theres no sign of lowering any time soon.

My next shot is tomorrow. I was looking on pubmed for the pharmacokinetics of the drug and I actually found a pretty interesting article that states that the half life of the drug is different in different people--like, way different. http://www.ncbi.nlm.nih.gov/pubmed/21084039
its weird because both times, i felt LOADS better soon after the shot--but then at around 5 weeks or so, the affect seems to wane.
09-06-2012, 09:40 AM   #87
raechel
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Linn- That is interesting what you found about the half life. I tried to go to the link you posted but I think it was just going over my head. I'm sorry to hear about your latest struggles too. I have been feeling better for the week or so after my shot, but it's hard for me to tell if it has anything at all to do with the Stelara or if it's just because I'm taking a medrol pack to ward off the allergy to the stelara. Personally, I think its just the short term boost in steroids that gives me the short term relief.
I noticed you said after 5 weeks the effects wane... how often are you getting the shot? I thought it was monthly like me?
09-06-2012, 09:46 AM   #88
Linn
 
Join Date: Apr 2012
I'm getting 90 mg every 8 weeks--whats your dosage like Raechel?
09-06-2012, 12:34 PM   #89
raechel
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I am getting 90mg every 4 weeks.
10-19-2012, 06:33 AM   #90
Lawyerboy
 
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How are you guys doing on stelara?

I have gotten two infusions of ustekinumab since the start of the trial and the inflammation in my colon totally disappeared; moreover the inflammation in the terminal ileum is reduced to almost zero. I still endure daily pain and bloating though. My GI does not have a clue what is causing it. Very very frustrating
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