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Simponi working great, and I got the lowdown on it....

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Ulcerative Colitis
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Posted 4/8/2014 6:36 PM (GMT 0)
Ask and ye shall receive: www.newswire.ca/en/story/1230187/simponi-r-golimumab-receives-health-canada-approval-for-ulcerative-colitis
Posted 4/8/2014 6:41 PM (GMT 0)
Fruitgirl is correct in both replies...CD can also affect the colon (crohn's colitis) so I really don't believe Simponi wouldn't work for those that have crohn's colitis, if simponi is targeted to reach and heal the colon.
Posted 4/9/2014 1:51 AM (GMT 0)
Simponi will work in any disease that is affected by TNF....depending on what you read....Crohns is or isn't completely mediated by that.
Posted 4/9/2014 11:00 AM (GMT 0)
How does Simponi compare cost wise to say Remicade?

Remi is still working for me so far (fingers still crossed behind back that it hold- as i feel like I'm on the egde for the past 6-8 weeks) so I would love the idea of another option... but had to jump through hoops to get Remi approved with insurance, etc... Would be great if it was cheaper!
Posted 4/9/2014 3:41 PM (GMT 0)
The bill that comes with my Simponi says $3200 a shot.....However, I have a $5 copay card that I use, which is hysterical.....

The only drawback is that it has an $8000 limit, and supposedly it's being charged to my deductible $800 at a time to my insurance, so that's 10 months a year. After that's up they claim they will "re-qualify me" whatever that means, because I'm not paying $800 a month for the last two months of the year. This year it won't matter because I started in march. I guess it depends on your policy.
Posted 4/9/2014 4:04 PM (GMT 0)
I've had slow improvement ever since going on simponi about 5 months ago. I still have some discomfort that comes and goes, but it's a lot less pronounced than it used to be. Stools are also usually loose but no urgency or bleeding. Anyone know if simponi will continue to improve colon after 5 months?
Posted 4/9/2014 4:19 PM (GMT 0)
not a clue about time frame, but I would imagine if you are still improving I'd take it. I know it's a 'quality of life' thing more than anything. I'm at a 8.5/10 now after only 6 weeks compared to a 2/10.

What else are you taking?

How would you rate your quality of life and everything else before hand vs. now on a 1-10 scale?
Posted 4/9/2014 5:47 PM (GMT 0)
Wow, Simponi is expensive, for 2 Humira pens it costs 1703.80 which my Alberta Blue cross covers, I just have to pay 25.00 a month copay to the pharmacy for it (and 118.00/month to AB blue cross for the coverage of Humira) which is better than paying for all of it directly out of pocket....Humira gave me free pens until my AB blue cross kicked in (took about a month for that to happen).
Posted 4/9/2014 6:01 PM (GMT 0)
Good questions Scott.

My quality of life now is around a 7.5 or 8. Before Simponi, I was around a 6. So improvement is definitely there. It's more a question of whether I still have lingering inflammation (and if so will the simponi continue to knock it back), or whether I'm in remission and am having other issues (residual nerve damage/ibs). I take a mesalamine enema and rectal suppository every night, and have had difficulty weening off of these.
Posted 4/9/2014 6:54 PM (GMT 0)
So does this mean, you don't need to take 6mp/imuran with Simponi?
Posted 4/9/2014 8:15 PM (GMT 0)
I am under the impression that 6MP and Imuran are short term medicines like steroids to get flares under control. They are preferably not to be taken long term because of the side effects.

Ideally, Simponi and a 5-ASA is what I will be taking the rest of my life.
Posted 4/9/2014 9:46 PM (GMT 0)
...Uhm, people can take it for decades without any issue. But that's not always the case, same with Simponi. Imuran is a maintenance medication.

Simponi is still young, in its infancy. Imuran has been studied for decades.
Posted 4/9/2014 10:02 PM (GMT 0)
Scott, you've had UC since 1975 and are under the impression that 6mp and Imuran are short term meds like pred/steroids???? Sorry, but I can't help but shake my head at your comment.
Posted 4/9/2014 10:04 PM (GMT 0)
Thanks ScottZ - I'm assuming it's a once a month as maintenance?
If so.. even at double dose of Remi (which I get), Remi might still be cheaper.. I'll have to look in to this - costs may be different here in canada too??? My double Remi is over 5000$ every 8 weeks (luckily insurance covers good chunck and I qualify for $ support for most of the rest) but still.....
Would be nice if they could come up with more of these good meds that could cost less!!!!! (LOLOLOL!)
Posted 4/9/2014 10:15 PM (GMT 0)
Imuran and 6MP were primarily designed for organ rejection and leukemia/lymphomas, then found to be useful in immune comprised disease states...in that case you have no choice but to take it. Plus, they take longer to work as they build up in your system and require weekly/monthly blood tests.

For UC, ideally, it's not really designed to be on it long term now anymore since biologics are starting to prove to be safer. The risk of leukemia, cancers, and other blood problems and side effects are far more evident in Imuran and 6MP now.

The people that are on it now, are in the "if it isn't broke don't fix it" category (which is fine) and I'm sure since they are working for them, they can stay on them. If biologics were just as cheap and readily available as Imuran, they would probably be prescribed now just the same. Even after 10 years of biologics, so far the safety profile is safer than that of Imuran and 6MP in the long run.

Canadagal, yes, Simponi is once a month after the initial month of 4 loading doses.
Posted 4/9/2014 11:55 PM (GMT 0)
Ideally it is. It rarely causes cancer. Do we know for sure Simponi doesn't? No, we don't. It's too early to rule everything out.

You have the same risk with that kind of cancer while being on Remi or Humira. Imuran has been proven to be a good maintenance medication for DECADES. So yes, it is ideal.

You sound like you're selling something. So once again, why are you so adamant? Simponi is still being studied. We truly don't know the true side effects of this drug. It's too expensive. And may not be fully covered on peoples' health insurance. But Imuran is cheaper and proven.
Posted 4/10/2014 12:31 AM (GMT 0)
I'm well aware what Imuran and 6mp were initially designed for all those things, but it was decades ago that they also learned they could benefit IBDers as well, so for a long time now they are considered common drugs used to help IBD. That's what is so frustrating about IBD, for as long as it has been around, we really don't have a single med targeted for our IBD, they're all cross-over drugs, including the biologics Humira and Remicade.

And docs still put newly DX patients on Imuran/6mp to this day...they don't jump straight to biologics on new patients cuz biologics are considered the big guns, the only time they would try a biologic on a new patient is if that patient came to them initially very bad off (like with a fistula and severe disease inflammation) and only if all other meds have been exhausted with no luck and/or a patient is allergic or non-responsive is what my GI told me.
Posted 4/10/2014 12:32 AM (GMT 0)

Scott Z said...
I am under the impression that 6MP and Imuran are short term medicines like steroids to get flares under control. They are preferably not to be taken long term because of the side effects.

Ideally, Simponi and a 5-ASA is what I will be taking the rest of my life.

I think you have it backwards. 6mp is meant to be used as a maintenance drug. I'd still be on it if it worked for me.
Posted 4/10/2014 1:21 AM (GMT 0)
OK, please.....

I have had the great fortune...and unfortunate rotten luck.....to have had this for almost 40 years, and seen medications come and go. I have also had some fortune to be in the medical field and be privy to a lot of doctors and be part of discussions and reps that can answer my questions and give me the information that maybe not everyone can see.

NO, I am not selling anything. I am only concerned with living to see my grandchildren...maybe great grandchildren....

I live in the Chicago area, and have the great fortune to be able to be seen by some of the top GI doctors at top hospitals, and I am blessed to be able to. I feel for everyone who does not have that ability, I really do. I thank god every day for this and my insurance and wish that everyone in this world had the same as I have. I seriously hurt for some of the posts I see on here and how bad some GI's treat some people..its a freaking crime. I can't imagine having to live like some of the posts I see. I don't know what I'd do.

With this in mind, my doctors and I firmly believe that biologics are the way now. The first ten years of them have yielded FAR less side effects than Imuran and 6mp, plain and simple, with no indications that it will fare anything but better in the future. Why are other drs still prescribing them? I don't know. Maybe it's what they are used to, maybe it's fear, lack of knowledge, cost, lack of insurance, apathy, I really don't know.

It's your choice, and I am fine with it if you are. No one is forcing any of you to do it.

My opinions are based on what I have seen over almost 40 years, my access to drs, knowledge and hospitals and the area I live in...that's all. Things have changed over the years, and it's different now. If what you are on is working for you...then I'm happy for you, and don't assume it means you should be changing...I'm not saying you should be.

I'm just saying this is for all people that are currently being diagnosed and need help now.

I actually need to slightly amend the previous statement also, since they take more time to work....what I mean to say is that the days of Imuran and 6mp are waning, since there are safer things out there.

There is no new money going into anything like Imuran and 6mp, as a matter of fact those are being used less and less for their original intentions while newer drugs are being substituted for them, while biologics are coming on the market more and more.
Posted 4/10/2014 2:06 AM (GMT 0)
Scott -

I know you aren't a Jansen Biotech employee or anything like that, but you should be well aware of the side-effect profile of these class of drugs. Having access to the best GIs in the world doesn't necessarily correlate to better care at all. It's not like the mayo clinic uses novel therapies that aren't offered elsewhere. A GI who is 5-minutes away from me will give me a simponi script if I ask for it.

I've just stopped looking at the studies sponsored by AbbVie, Jansen, Shire or the other manufacturing companies because they sugar coat the data and minimize all side-effects, making the drug look safer than the placebo. It's worth investigating why so many doctors jump straight to biologics when safer options are available.

Yes, many do consider 6MP/Imuran safe simply because those class of drugs been in the market longer and have a better track record at the moment. I think time only time will tell how safe biologics are.

Looking at the cochrane reviews (a third party organization with no conflict of interests) of simponi (and other biologics), they unanimously conclude that it is associated with very severe side effects and a higher risk of infections that would otherwise be latent. I really don't like my chances on this page.

Overall, in the short term biologics were associated with statistically significantly higher rates of serious infections, TB reactivation, total AEs and withdrawals due to AEs. Serious infections included opportunistic infections as well as bacterial infections in most studies. Some biologics had a statistically higher association with certain adverse outcomes compared with control, but there was no consistency across the outcomes so caution is needed in interpreting these results.

For what it's worth, I asked a locum GI to me put on simponi around this time last year, prior to a surgical consult. My GI refused given my poor track record with remicade and humira and told me to try other experimental therapies.
Posted 4/10/2014 2:27 AM (GMT 0)
Um.....Cochrane reviews:

This version published: 2013; Review content assessed as up-to-date: July 30, 2010.

That was FOUR YEARS AGO.

127 out of 1,000 had serious side effects compared with 118 people out of 1,000 who took placebo (1% absolute harm).

So 9 more people in 1000 had a side effect than a placebo. Yeah, I'm not really taking this as anything legitimate.

Lymphoma was little or no difference reported as compared to placebo.

ON the other hand, from the NIH:

Imuran:

In transplant patients, skin cancer is 50 to 250 times more common than in the general population, and between 60% and 90% of patients are affected 20 years after transplantation.
Azathioprine is listed as a human carcinogen in the 12th Report on Carcinogens by the National Toxicology Program of U.S. Department of Health and Human Services, asserting that it is "known to be a human carcinogen based on sufficient evidence of carcinogenicity from studies in humans."Since August 2009, the U.S. Food and Drug Administration has required warnings to be placed on packaging with respect to increased risks of certain cancers.

6mp:

Mercaptopurine causes changes to chromosomes in animals and humans, though a study in 1990 found, "while the carcinogenic potential of 6-MP cannot be precluded, it can be only very weak or marginal." Another study in 1999 noted an increased risk of developing leukemia. Mercaptopurine causes myelosuppression, suppressing the production of white blood cells and red blood cells. It may be toxic to bone marrow. Weekly blood counts are recommended for patients on mercaptopurine.

Back to the Cochrane reviews:

How safe are azathioprine and 6‐mercaptopurine?

The drugs were generally well tolerated and side effects occurred infrequently. However serious side effects such as acute pancreatitis (an inflammation of the pancreas that causes severe abdominal pain ‐ a 2% risk) and bone marrow suppression (failure to make normal blood cells ‐ a 4% risk) can occur. Patients taking these drugs should be regularly monitored for evidence of effectiveness and side effects.

This shows a 2%-4% risk of serious side effects on Imuran or 6MP...higher than the 1% serious risk on biologics they state.

.....................................................................................

I'll still take my chances on Simponi after reading the Cochrane information and the current info I have read otherwise..I have no problem with whatever anyone else takes, it's just my own opinion.

.
Posted 4/10/2014 1:44 PM (GMT 0)
Reason I asked question because normally most of the GI will prescribe 6mp/imuran with any biologics so you don't develop antibodies and you can use biologic for longer time before it stops working.
When Scott said Simponi does not develop antibodies I thought it would be better option than Remicade or Humira if I ever have to take biologics. I know some people can not take 6mp and they take biologics by itself but for most that's how GI go.
I am taking 6mp for last 7 months and it is working most of the part but still see bleeding. My GI said its been around for 40 years and he trying to avoid biologics as he thinks they are pretty new and not enough data. So avoid as much as you can.
Posted 4/10/2014 2:57 PM (GMT 0)
Again, this is where everyone is different. There's over 10 years data on biologics now...that's a lot.

My GI does not prescribe 6mp, (and Imuran occasionally) anymore because of the risks involved. If it works for you, then fine. But, if you are still bleeding after 7 months...I think it's not working.

I am one of his 8 pts (now) on Simponi, and after 6 weeks I am in I'd say 90% symptomatic remission with no bleeding after 3 weeks, and my life quality is so much better. The same goes for all of his patients. You can pretty well see above comments for my feelings on the matter of why I think GI's don't prescribe biologics as much as they should at this moment.

Again, I'm not advocating any of you to quit Imuran of 6mp if it's working for you....this is just my opinion.
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