Stelara: Negative Experiences? Side effects?

Hello all!

I was wondering if anybody using Stelara has experienced these side effects they list, such as:

- Serious infection, possibly resulting in hospitalization
- Cancer

or the basic side effects:

- Upper respiratory infection, headache, tiredness

How bad was it? How long did your side effects last? Was it worth it in your opinion?

Thanks in advance!

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38 replies. Join the discussion

I'm starting to wonder how us new members are going to get any replies! I'm sorry I can't help with this one but maybe we can figure out how to get the ten responses a day other threads have on here!?

Hope you are well

Em x

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I have been on Stelara for 2 years, i did the standard dose for the first year and a bit and then upped it to 45mg every 8 weeks. I have not suffered any side effects, maybe a headache and fatigue and increased appetite once in awhile, usually a day or 2 following injection. I have actually been far less sick than before i was on it. I have 2 kids and between them and my husband someone is always coughing and stuffy and i think in the last 2 years i have caught what they had once. I was quite leery as it was a bout of double pneumonia that triggered my psoriasis in the first place 4 years ago. But so far so good.

PS i usually get side effects from everything i take. don't even ask me about the low dose of metho i did recently... now that drug i will never take again.

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I started Stelara the Jan 1, 2011 (Actually 12/31/2010) and my side effects have been drastic.

The most notable are:
Clear skin and pain free joints.

It did take about 3-4 months for complete clearing.

The one advese side affect is an occasional itch that pops up on various locations of my body.
Usuallly torso, shins, or forearms.
Comes and goes once or twice a week and I have been unable to pinpoint a possible cause.
1 Zyrtec provides 24+ hours of relief until the next bout of itching comes along.

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Thanks for the insights!

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i know you are male, but maybe a female will see this also. i ended up with cervical cancer. i was on enbrel, humira, then back onto enbrel before i started the stelara. right around the first stelara shot i had a pap come back as low grade dysplasia, and within 6 months it turned into both adenocarcinoma in situ and squamous cell carcinoma. the oncologist i saw said he is pretty certain it progressed so quickly because of the tnf-inhibitors and stelara. other than that, it was working so good at keeping my psoriasis to a minimum, not clear, but very well controlled and it also seemed to help my joints because i have psa as well.

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Hello there Captain and welcome to our P world.

I'm sure you know by now there many great people with useful information here...

I too am in this decision making process and endlessly researching as well.

No matter what route you take, deciding with this new bio or other treatment, I support you.

It's also great too see you're being proactive and doing your homework as well.

Please please, continue this research till you fell completely comfortable with your decision. I'm sorry, I can't share my personal experience with this drug but just wanted to share my 2 cents and I thank you for reading.

There are many 'non pharma sponsored' efficacy and safety data on line (have to dig deep) which may help you as well.

I see many do well on this bio but from time I have spent researching (again, this is my personal opinion only) Just feel as it does not have enough long term safety data that is convincing to me as of yet.

I'm assuming you have tried other treatment methods and this being last resort?

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Hi Captain Nemo. I have been taking Stelara for over 2 years with good success. Since spring I have had one virus or another pop up and I did get an upper resp injection with a cold, took antibiotics, it went away and is now back. I am on the minimum dose (45mg) and have skipped two weeks of Stelara due to the virus/infection. My p is coming back on my arms so hope when I am well enough it will calm down with a new injection. Did end up in ER when I got the CMV virus. They kept me overnight.

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I have been on Stelara since April 1st, and i haven't had any side effects from it. I have to say it doesn't help me as much as the Humira and methotrexate did. In fact, the P on my feet has come all the way back. My derm and i decided to start me back on low does methotrexate to see what happens. I will probably go back to Humira........i am still trying to figure out why they took me off of it in the first place. Stelara is good for some people, but not so much for me. Good luck bro

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I have been on stelara since September and am totally clear of my Guttate p and have no side effects besides a couple minor rashes and my feet have been dry and cracking. But I will take those side effects as long a my p is gone.
I am extremely happy to have an appetite back and NO P!
Pumped with effects of Stelara to date.

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Hello there....

I was wondering about you. It's good to hear you didn't have any side effects but I'm sorry to hear your P has come back. Boo..:(

How's your ppp? I know it's stubborn.....

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Well its ok, it does that. I have been trying to put my palms in the sun when i can, and i think it may help a bit. I know my arms sure are tan lol! I think i will go back to Humira, but maybe the methotrexate will kick in and help the stelara out. How is yours?

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O.... Bri.. I had high hopes and this new bio kicking your P to the darn curb.

Think after 16 weeks (? I maybe wrong) if no shown success should switch or stop from what I have read.

I still have not made a firm decision on bio or other systematic. Actually tanning bed daily on paws, feet have been the most successful.

I know what you mean, I didn't know palms can be so tanned. (like your arms) I think natural sunshine would do your paws good.

Have you always had ppp before starting Hmra?

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Well thank you, but my P has only been kicked to the curb a few times since i have had it, and it only lasted a week or so. My derm told me that the stelara was helping me 50% or so. When i first got on it he told me they usually give it 6 months to work. I have had PPP for about 4 and a half years or so, its showed up after went through my divorce, isnt that wonderful? Lol
They started me on Raptiva in June of 2007, which did nothing for me. THen they tried enbrel, which was useless too. Humira cleared me up fairly well at first, then i would get breakouts so they started me on mtx. I never stayed all the way clear on my hands, but my feet were totally clear. So far thats the best combo that i have had. I wouldnt worry about getting on a biologic, they are pretty safe, plus they check your blood every visit. I havent had any side effects from any of the ones i have been on at all.

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oops.. That's right... Divorce.. I'm so sorry dear..

Usually feet are so much harder to clear but in your case, it's your poor paws. I don't know what's worst paws or feet.

P and bio's success is so different from person to person... Only 50% clear or so..

Seems Humra/mtx can be a good combo for many people.

Thank you as always for sharing. Have to say for me, not worried about bio efficacy but am concerned about long term safety for now.

Always wishing you P free, pain free days...

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Stelara: Negative Experiences? Side effects?
how's this for side effects,this forum sounds like its put together as a cheer leading squad for Johnson & Johnson,i tried Methotrexate,humira,remicade,enbrel,and now stelara,1st injection put me down for 24hrs,ringing ears,dizzy,stomach issues,OK its not for me!! i get the picture,the great thing was they charged me 8235.00 for the one shot,after insurance,deductions,my part is still 3081.53 for one shot,,how's that for a side effect??? called the maker J & J,they do not stand behind the drug at all,i asked for them to replace the used shot at the doctors level so they can scrub the charges and i can be whole,not about that customer service? i did'nt see that in all the fine print before i got the shot,as for me and my extended family we will try to avoid all J & J products from this point on,of course we are only 42 people strong as of now but i think all people should reward bad service with bad business,i will have to see how it all pans out but as of now it looks like that is going to be one expensive shot,merry xmas to me,,

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I have been on Stelara for 5 months. It has helped some. No side effects, except I keep getting strep on my skin. (no sore throat) I have had strep on my skin 25 years ago and have never had it again until recently. I have had strep 3 times in the last 6 months. Doc suspects it's because my immune system is being compromised by the injections. I was on Embry for 1 year and it stopped working, then Humera for 8 months and it stopped working. Started the Stelara. It cleared up 100 % for about 2 months and now it is real bad again. Doc suggested I go to see a specialist in San Francisco. In the meantime I am starting to get the injections more often rather than increase the dosage.

As for the cost of the Stelara. My insurance paid all but 200.00. And I went on the Stelara site and signed up for their program, so there is no cost to me for a year. Now I am not sure how much it will cost for the injections because my insurance will not cover if I have to have them more often. I will have to let you know next week how that will work out.
I agree that this has been a very expensive disease. The other meds that I have had to use along with the injections have cost an arm and a leg. The ointments for my face, my bottom, and then the rest of my body, each is a different medication. Then the over the counter oils and creams to keep the rest of my body moist. Then the copays for each Doc visit and the lab fees for the blood work. And now it is the beginning of the year soon and will have to start all over again with deductables. aauugghh !!!!!

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As for the medication being charged as an office visit through your doctor, that can't be done. It is a medication and has to be charged as a medication. You might want to check with your state insurance commissioner. They would be the best place to start.
I would also talk with your prescription plan. They might be able to work something out.

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bill reads description of services "injection" then the doctors name,i have filed a complaint for review of services rendered and charged,i believe i was charged for multiple doses but only received one,its rare that the patient wins in any of these cases,its about money and money alone,i count it all as loss and when i finally pay it off will forgive and forget,i find after 30+ years of dealing with this monster that money is the least that you loose,loss of freedom,self-esteem,and mental challenges, rank higher,all beyond or out of my control.

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I have taken 3 shots of Stelara. It worked to clear psoriasis to 90% after the first two shots but now its back up to about 50% coverage. But the pain is significantly down. So its a mixed bag. Still, I am doing OK. And yeas, no side effects so far. Also, I don't catch cold anymore than those in my family who do not have PsA and don't take Stelara.

I wish Stelara were more effective in treating the psoriasis part. But it somehow isn't. At least not for me thus far.

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I am sorry you haven't gotten any replies, I will look at your posts and see if I can help.

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