Stelera Concern

** Originally posted by weebee40 **

Hi I am about to take my first shot this week and just wondered if anyone out there had 2nd thoughts. I trust my doctor but then actually read the literature and it scared the "bleep" outta me! I know the extreme ones are rare but just curious if any of those side effects bothered anyone before treatment. I have had psoriasis for over 20 years and it is just spreading. Creams and ointments worked but got tired of using them and the psoriasis seemed to come back worse! So this Stelera really excited me but now I am having second thoughts. Please, any feedback would be greatly appreciated, especially if you felt this way! Thank you!

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** Originally posted by ericw10 **

Hi I am about to take my first shot this week and just wondered if anyone out there had 2nd thoughts. I trust my doctor but then actually read the literature and it scared the "bleep" outta me! I know the extreme ones are rare but just curious if any of those side effects bothered anyone before treatment. I have had psoriasis for over 20 years and it is just spreading. Creams and ointments worked but got tired of using them and the psoriasis seemed to come back worse! So this Stelera really excited me but now I am having second thoughts. Please, any feedback would be greatly appreciated, especially if you felt this way! Thank you!

The literature is scary but you have to remember that we live in a very "lawsuit happy" society. Any incident that has happened or was seen in clinical trials must be disclosed no matter how small the number might be. Untreated chronic inflammatory diseases have risk factors of their own, so it can be difficult to sort out what might have happened anyway independent of the treatment side effects. If you passed all the pre-screens and Stelara is working for you, all you can do is listen to your body and be timely & persistent with the doc if something doesn't seem right.

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** Originally posted by devkar **

You will live a much longer happier life. It is a no-brainer for me,and if your health and weight is good, I would suggest you re-read all those posts on here whose life has changed so much for the better.

Hi Petey:

I have had psoriatic arthritis since May 1981. NOw the psoriasis has spread to cover 90 percent of my body and the arthritis has also spread. I have been on MTX for more than 5 years but it is not doing much good controlling the psoriasis. The arthritis control could be better but at least i am getting by on MTX. I have heard of wonderful relief from Stelara. Now the FDA is going to approve Stelara for PA. But I am a scary cat. I get real nervous about taking a biologic like Stelara. I would really love to hear from you. What has been your experience on Stelara. Were you never scared taking it the first time? Are there any side effects that you would like to talk about? How does the doctor monitor patients on Stelara--are regular blood tests the onyl means of doing so? Thanks so much for your help.

Dev

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** Originally posted by LilBudyWizer **

I would suggest talking to your doctor about the things that particularly concern you. Often such documentation doesn't provide a complete picture. They discuss what can happen and the chance, but not what can be done to mitigate the risk or consequences of the problem developing. Oh my God, liver damage, the liver seems rather important. Well, complete shutdown of your liver would be a terrible thing, but then one drunken vacation might do the equivalent of the damage they're actually talking about.

I'm on a chemo medicine that has a chance of converting the disease it's treating into leukemia. Well, I would certainly hate to get leukemia. I am routinely checked for any sign of leukemia and if there's any sign I have more extensive tests. Should the worst happen it will be caught early. That substantially increases survival rates since leukemia kills rather quickly.

With my case I face a high risk of heart attack or stroke as an alternative. I've already had one heart attack. With psoriasis it's easy to say, well, it's just unsightly. Well, it's disabling for some. With many it's emotional devistating. Well, hell is hell. The emotional, not just physical, impact of this disease upon your life is a legitimate issue. If you don't much care about the psoriasis then why incur the expense, much less the risk? If it's making your life hell though why suffer needlessly?

When it comes to the adverse effects there's no absolutes. Perhaps an odd way to look at it people have preferences when it comes to diseases and disabilities. Some viewing dieing as the worst thing that could happen, I think there's a lot worse that could happen than dieing. So you also have to look at what those adverse effects might mean to you personally. Trying to view is as some objective, quantifiable thing is to me misguided. That's viewing it as misery is some quantifable absolute. People with leukemia suffer more than those with psoriasis. Physically perhaps, but emotionally some do, some don't. It's no more absolute than some quantification of the severity of psoriasis is an indication of how much the individual suffers emotionally from this disease.

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** Originally posted by devkar **

Hi LilBudyWizer:

I hope and pray that you do better and better every day. I am so grateful for your insights. Your comments are extremely helpful. Yes, I agree. Living with certain conditions can be worse than actually dying. It is difficult to quantify anything about life. Its fickle and there is uncertainty. Pema Chodron, the famous American Buddhist monk worte a book called "The Places That Scare You". I love reading it. I am still mustering the courage to take Stelara. People like Petey are an inspiration to me. All the best and may God bless,

Dev

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** Originally posted by devkar **

Hi Petey:

Thanks for getting back to me. You are so correct. I was scared of taking MTX too. In fact, my rheumy yelled at me once for refusing to take MTX. I procatinated for 10 long years. Finally, I started taking it one day 5 years ago. I don't like taking it but I do. You are absolutely right about thew side effects of MTX. By many accounts, they are a lot worse than Stelara. About the only thing going for MTX is a rather long track record--I believe 40 some years. But that does not mean it is safer than Stelara. One day when FDA approves Stelara for PA, I will take it just like I started on MTX. People, thanks a lot for all your support. I don't know what I would have done without all of you. This message board played a significant part in getting me started on MTX. It's helpful for scary cats like me.

Dev

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** Originally posted by plira **

Hi Dev,

This is the first time I have ever posted on a forum, so I hope I am doing this right! Lol. I saw from your answer that Stelara is being approved for PA where did you read that at? I am currently on Simponi which does nothing for my psorasis! As for taking Stelara I would do it in a heartbeat, I believe it has the same side effects as injections like Humira and Enbrel. I had injections for Humira for a year and half and it was great, but then it stop working so my doctor put me on Enbrel which also worked for a couple of years but then it stop working ( I was getting injections twice a week) The worst side effect I had was pnemonia and I was in the hospital for 5 days but by choice it was that or see my doctor every other day. and that was a year ago and i have had not problems since.

Patricia

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** Originally posted by plira **

Hi Patricia, I started the phase three trials for Stelara (then CNTO-1275) five years ago and the doc suggested it may help with the arthritis but it wasn't being tested for that. I was a hurtin' unit ,and although my psoriasis was kinda bad,it was the pain from moving around that made me feel especially old (in my forties)....so within a couple of months,I could report a real significant change,eventually no pills for pain...and so here I am now,virtually pain free. Funny though,along the way, I have have different problems with joints in fingers and some back issues,but they seem to have all but disappeared, and I only have the sausage joints in my fingers for proof of my illness(and still not 100 percent nails-but way better). I could play guitar with them though,thats how good. If you have arthritis,don't hesitate.

Hi Petey,

That is so great to hear! My rheumatologist I had for years left in June for another job however before he left he told me that if I a bad flare up with my psoriasis that I should ask my new doctor to put me on Stelara I just didn't know if it could help with my PA. I suffer from both PA and psoriasis, my PA is bad but my psoriasis is the worse it has ever been! So I am sending an email to my Rheumatologist and asking her to please put me on Stelara! Thank you!

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** Originally posted by RichJ **

hi patricia,
im sorry that i can't help much but welcome to the p family. you have meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

try and have a good weekend all

richard

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