Stelara

I recently got a new dermatologist. She wants to start me on Stelara.

Just wondering who has had success with Stelara. I would have the injections administered at the Dr.'s office.

Any input/advice would be appreciated!!!

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Hi Samb615 and welcome.

I was on Stelara last year and went off of it after the first two shots. I was a bit afraid and guess I just wasn't ready, despite the fact that my skin had cleared quite nicely after those first two shots and remained that way over the next twelve weeks. After I didn't take the next shot (third shot, week 12) my skin began to show signs of psoriasis again, despite the fact I had gone back on Enbrel, which I had been on relatively successfully for several years. Until that is, when I first switched to Stelara, which was because the Enbrel was doing as much for my skin as it once had.

I came to terms with my fears and decided, when the Enbrel just wasn't doing anything for me currently, that I would go back on Stelara. I just had my second shot for Stelara and am very pleased. I see the changes happening and believe within the next few weeks I will be nearly clear. I have psoriasis on my elbows, knees, lower limbs, thighs, buttocks, scalp, hands, groin and under my breasts. My elbows are showing the most improvement right now, with my belly, lower limbs, and thighs following close behind.

Best of luck to you!

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Edit to amend:

... Enbrel WASN'T doing as much ...

I wish there was a way to edit our posts for mistakes like this.

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Do please be aware, I took Stelara and it did wonders, however, the benefit may not outweigh the risks. I had extremely bad panic attacks. It didn't start right away. I had the first two shots, and one follow up. Stayed clear for probably about a year. Slowly it started to creep back, but in different areas. Now the places where I used to never have problems, I'm having problems. The panic attacks interfered with my personal life and work, driving was a nightmare. Mind you, I was on Xanax the whole while, having to take them under the tongue and let them dissolve at some points, just to get past them. It felt like I was going to die at some points. Six months of the attacks and they slowly went away. I may try Enbrel or Humira next, but I'm not sure how they will perform. I have had the best results from intralesional injections of Kenalog. Seems to clear me for around two months at a time, up to six months with Clobex. Sometimes I can remain clear for up to a year by simply getting extra sun while vacationing. Some of the Kenalog is going to be absorbed into you, clearing spots that you don't even get injections to. Mind you, this is painful and you will get literally about 50 little injections depending on the size of lesions, locations, etc. Do not be scared, but do please be wary. You won't die, but you may or may not have severe panic attacks. It has been reported several times. It happens to some people and others it does not. Hope this helps.

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I've been taking my shots for a year now, my skin is perfect. No side effects.

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First Stelara injection not much happened , second injection plus 2 weeks P started to clear and continued so when the third injection at 12 weeks was done I was almost completly clear and it has stayed clear. Fouth injection in 3 weeks time and I think that Stelara is fantastic,no side effects to speak of and I have had P and PA for 36 years plus with 4 hospital admissions over the years. I have had so many different types of treatments ,Cyclosporin,MTX ,lotions , potions and most other things inbetween but Stelara is the best but it does nothing for the PA unfortunatly which I have to control with painkillers,the MTX, which I took for 9 years, did help with the PA as well as the P.

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I have had two Stelara treatments and have seen quite a lot of improvement...my scalp has totally cleared up and my hair is already growing back. My skin has lightened, but has not cleared. The only side effect for me has been stomach cramping this past week. However, I am not sure it's from Stelara or just my usual digestive problems...I have Celiac disease and am lactose intolerant, so could easily be ingesting something by accident.

I think Stelara is probably the best biologic currently available. My dermatologist is sure a supporter - has nearly 100 patients on Stelara right now. He also feels strongly it is the safest. Thus far, no patients of his practice have reported any serious problems.

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I don't know an awful lot about the side effects that could be caused be Stelara, but I was thinking because of the worry about this it could cause Rageez to get panic attacks . The mind can do strange things sometimes. I too worry about the long term effects of this treatment. I have regular blood work done and so far everything looks good. I just wish I didn't have to get these shots, but I do like having my skin back.

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I may try Stelara again, but if I do I will watch what happens after the starter doses and wait on the third shot. I had all normal blood results, as well. My Pain doctor who is also a Rheumatologist and an Anasthesiologist(I also have Psoriatic Arthritis and Ankylosing Spondylitis) said that the panic attacks were most likely brought on by long term use of narcotic pain medicine's taken for my condition, and that although it could be related to the Stelara, since it happened so soon after injections, he did not think the Disease Modifying Agent(Stelara) was the problem. Also, my family has had a history of GAD, which is why I have been on Xanax(anti-anxiety) for years. My Dad and Uncle both later explained having similar attacks around the same age as I, at 25-26. No one else in my family has Psoriasis, though. Drugs taken off of the market that focused on T-Cells were very broad. They would have an effect on the whole immune system. Drugs like Enbrel and Humira are a little better, but not much. Stelara takes it a bit further by blocking the two Interleukins known for skin inflammation communication. Do a little research on Interleukins, and you may understand a bit more of what I'm talking about. The two IL's Stelara focuses on have a major impact in IL 17, for which there are now medications taking it a step further. Since these proteins focus on skin inflammation, and not other tissues, you will notice Stelara does not have much effect on PsA. It's not looking into the joints. IL 17 Medications will be even less broad than Stelara, hence the writeup calling them "Stelara 2.0" and such. You are talking about proteins and blocking them and the binding of proteins at a molecular level in some of these cases. In summary, you have broad range, less broad, and now down to an exact target. I never went to college, never graduated High School, got a GED. However, when it comes to what I'm putting into my body, I research and I do consider myself very intelligent. I do not completely disagree with my Pain doctor, but even he was amazed with my knowledge of the drug and what it was actually doing. He even seemed kind of baffled and was unable to answer questions about the proteins specifically. If the doctors don't exactly know what they're giving you, the next best thing is for YOU to know what they are giving you, correct? Anyways, sorry for the long explanation, but I hope it helps. Perhaps in the future, we will all wise up and do it the best way, which will most likely be done by rebooting the immune system. The problem is that it's not particularly safe at the moment. Research psoriasis after bone marrow transplants or stem cells. Rebooting the immune system has completely cured a lot of people from all kinds of autoimmune conditions, not only Psoriasis or PsA for that matter. If your Psoriasis is located in major areas and is not a full-body type(I'm lucky, as mine stays to the elbows, knees, etc.), perhaps you could ask about the intralesional injections. They have done wonders for others, as well. It never hurts to ask, and a steroid injection is not as likely to cause extreme immune side effects as blocking proteins, my friends. It's not for everyone, but then again, what is for everyone? I'll be waiting for the IL-17 meds, also. I can live with the joint problems, for now. I just like to have my skin clear. I hope this is informative and helpful. Perhaps I should have expanded my explanation in the first post. Thanks and good luck!

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Thanks Ragedz for giving us so much information. You sure have done a lot of research . Thanks for taking the time to explain things. I love having clear skin so I try to put all the negative stuff on the back burner, I just hope I don't regret it down the road.

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One of the things that Stelara has appeared to have helped with is my toenails,I had, over 10 years ago, a course of treatments which I think were called Retinoids. It was a type of treatment related to vitamin A and they caused ingrowing nails mainly on my feet and it was so severe that my big toe nails grew out the side of my toe and was very painful. Recently after the third injection of Stelara the ingrowing toe nails have stopped giving me problems ,it must be connected after over 10 years of problems even after several operations to try to stop it it just seems to be to much of a coinsidence not be connected.

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After 8 years of topical ointments, methotrexate, Soriatane, PUVA, diet changes, homeopathy, acupuncture, Enbrel and Remicade , I have noticed significant improvement in my plaque psoriasis after only two injections of Stelara... No side effects noted. Time will tell if this is the answer. If it is ,it will have changed my life!

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That sounds so painfull doctor. Glad you're getting some relief. I'm looking forward to summer thanks to Stelara.

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I've had severe scalp psoriasis for 15 years, moderate psoriasis on rest of the body.

Stelara is the first biologic I've used. I've had two shots so far, and I'm nearly clear. No side effects.

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Well now I am just waiting for all the paperwork with the insurance to be done so that I can start on the injections!

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Good luck Sam. I'm so happy my skin is so clear now that the good weather is hear.

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Just got my 4th Stelara injection today. I have been cleared since my 3rd injection with no side effects. Hope it works out for you.

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Thank you! I will keep you updated once I start the injections!

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The Stelara is still working fantastic on my skin and I have my second 12 week injection at the end of next week however has anyone had side effects that make your muscles ache,no hurt would be a better description, as that's what I have at the moment.I do have PA which effects my back and I do get pain down my legs but this new pain is a muscle problem which after any type of use makes them really painful in my legs and forearms.It even hurts when I cough or sneeze after any type of exercise such as walking any distance over a few hundred yards .

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Doc,

I can relate. Please, check it out with a physician. It sounds like it could be or is somehow related to peripheral artery disease (PAD.) I've had angioplasty four times in both my legs with three stents, as well as angioplasty in my arm.

I do NOT believe this to be related to the Stelara and/or Enbrel I had taken for years.

I'll keep good thoughts for you.

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I am waiting for my insurance to approve the request for Stelara. First request was denied. Now a prior. auth. was needed. They said I had not meet the step therapy requirements. Lets see I have done MXT, cyclosporine, enbrel, humeria, dovenex, clobetasol cream and ointment. What else is there????
Praying they approve if not it was not Gods will for me to be on it.

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