I have PA for many years and have been prescribed various biologics. At the moment I am taking Methotrxate and soon to start Stelara and gradually wean off Methotrxate. Has anyone had any experience of Stelara ?
Thanks.
Here are the search results to previous discussions for you to take a look at pending responses:
Hi Jeanne,
I actually just started Stelara this week! Because not many people have been prescribed Stelara before, or have taken it for long periods of time, it's been tricky finding helpful information. Most users of Stelara have severe plaque psoriasis, rather than PsA, or so it appears from other forums I've looked at.
Also, Stelara works a little more slowly than other biologics such as Enbrel, Humira, etc. The injections are less frequent and engage a different mechanism for helping the body, rather than anti-TNF.
So far, the injection is incredibly simple. Feels like nothing compared to MTX or Enbrel injections. I had a mild site reaction that went away w/in 24 hours. The only day-after side effect I had is extreme fatigue. My body felt like a sand bag, but that improved w/in 24 hours also and I was still able to go to work. Other than that, I will keep you posted. Keep me apprised of your journey as well!
(I am still taking MTX and do not plan to change. Was previously on Enbrel until it created drug-induced lupus. My psoriasis is very mild, but the arthritis was severe. Enbrel and MTX put the arthritis basically into remission, but the development of lupus required a change to Stelara. Hoping Stelara will be successful for my joints and the lupus will go away!)
NxNW
Thank you for your reply. I was diagnosed 24 years ago and the only medication they prescribed was MTX . I was on Embrel for quite a few years but sadly it stopped working. I had awful side effects on Humira and it really didn’t control the PA. Steroid injections work well, inflammation goes down really quickly and I have loads of energy, but my rheumatologist does not think they are a long term solution. My psoriasis was also very mild but not the PA.Now waiting for my first injection. Keep me posted on how you get on and I will do the same. Jeanne.br/>
northbynorthwest22 said:
Hi Jeanne,
I actually just started Stelara this week! Because not many people have been prescribed Stelara before, or have taken it for long periods of time, it’s been tricky finding helpful information. Most users of Stelara have severe plaque psoriasis, rather than PsA, or so it appears from other forums I’ve looked at.
Also, Stelara works a little more slowly than other biologics such as Enbrel, Humira, etc. The injections are less frequent and engage a different mechanism for helping the body, rather than anti-TNF.
So far, the injection is incredibly simple. Feels like nothing compared to MTX or Enbrel injections. I had a mild site reaction that went away w/in 24 hours. The only day-after side effect I had is extreme fatigue. My body felt like a sand bag, but that improved w/in 24 hours also and I was still able to go to work. Other than that, I will keep you posted. Keep me apprised of your journey as well!
(I am still taking MTX and do not plan to change. Was previously on Enbrel until it created drug-induced lupus. My psoriasis is very mild, but the arthritis was severe. Enbrel and MTX put the arthritis basically into remission, but the development of lupus required a change to Stelara. Hoping Stelara will be successful for my joints and the lupus will go away!)
NxNW
Hi Jeanne,
Update: I'm 10 days out from my first Stelara shot and about 3 weeks out from my final enbrel dose. So far, what little psoriasis I had is completely GONE. Like it was never there! Unfortunately, my arthritis is really kicking back. Lots of pain. I cannot take steroids or NSAIDs, so MTX and tylenol are where I'm at right now.
How are you doing?
NxNW
Sorry to hear about your arthritis is not getting any better but maybe early days ? I start Stelara on Wednesday and to be honest with you I an dreading the beginning, once again,of another drug. My fingers and feet are very painful and the fatigue I am finding hard to deal with . I live in the UK
And have a good rheumatologist also G.P. I feel at times I am living daily with the thought will the Stelara work, what if it doesn’t, hard to be positive at times. Will just have to wait and see.
Can I ask why you are not able to have steroids or NSAIDS ? I get nearly instant relief from Steroids and would have the injection every three months if I could! I have retired from work which helps, but when at work just had to get on with it which in a funny way helped. Do you have an email address and maybe we could keep in touch by email.
Take care and will update you on my progress or not !!
Hi Jeanne, if you send NxNW a friend request you'll be able to email through the site but I hope that you will both post your progress or otherwise here on the site so that everyone can support you and learn from your experiences with Stelara. In the meantime, fingers crossed you both get some relief with it. All the best, Jules
Jeanne said:
Do you have an email address and maybe we could keep in touch by email.
Take care and will update you on my progress or not !!
Hi Jeanne,
Just read your post.
I was started on Stelarra last year, for my extremely difficult to control psoriasis. It has had a life changing effect on my skin, the plaques have literally melted away.
Unfortunately I have had a really poor response to Stelarra in the control of my Arithrits.
I was on Enbrel before which worked on my joints, but not my skin,so in essence I have sacrificed my joints for my skin.
I was not told of the really long possible lagg time to my joints responding to treatment, and after nearly 1 year I hold little it will benefit my extensive joint disease.
The issue seems to be that not enough research being done into this because there is just not the body of evidence as Stelarra has only relatively recently been given approval by NICE for the treatment of PSA.
Would love to hear from anyone in the same boat!.
Have been offered sulphazalazine, a drug I tried 30 years ago!.. So depressing.Have decided for now to decline the offer,which kind of feels empowering.
Update: Officially am quitting stelara this week as there has been no improvement and a huge increase in inflammation. Also am starting steroids today, a previously contraindicated treatment for me, but the only option at the present moment. Rheum and I both agree this was a failure, but are looking ahead to more options soon.
Ugh.
Had my first injection of Stelara three weeks ago. Horrendous side effects. Going to have second jab next week but not holding out much hope. Most joints painful , saw GP today. She agreed with having second jab , has written to rheumatology to bring my appointment forward re the pain in my joints.The results for psoriasis seems to be very good but for arthritis the results so so. Sorry to hear it hasn’t worked for you and I’m not so sure I will be continuing with the drug. What next I as myself arghhhhhhhhhhh.
How horrendous? Just curious, once insurance approves I will start it. Limited luck with Humira, Cimzia and Remicade. The other two weren’t bad, but Remicade gave me migraines complete with extreme vomiting. I have tons of pre-meds now and Rx for migraine and nausea, but it still isn’t great given that its not working.
I’ve been on Stelara for about 18 months. Did a year of Humera then increased to weekly…Then Cimzia for 6 months. Methotrexate a few years back, daily low dose prednisone (awful to wean off) Important to note that I don’t have any skin disease, never have. If my Stelara shots are every 12 weeks I have about 9 weeks of doing pretty well then tapers off…no side effects to speak of. Overall fatigue and severe pain are less. Bummer is my fingers are often sausages and none of the meds have put a real stop to the disease. Chronic flare here…seems like Stelara is the best so far. 
I have been on Stelara since December now. I think I’m doing better than on Remicade. I got the max dose along with a loading infusion because I also have Crohn’s disease. I would not say I’m in remission but I’m having a better year than last year.
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Hi Lola,
I have just come back on site. Well Stelara didn’t work ! After the first injection last October I had a really bad chest infection which lasted for weeks. I had to restart the programme and first injection was in January. Side effects were a rash and itching in places where there was no rash. Agreed to have the second dose four weeks later. No improvement , inflammation and pain in joints became worse, itching spread to my eyes and felt really fatigued also very irritable !
I saw my rheumatologist today and because of side effects to stop this drug. Steroid injection given and to be screened for another biological. I was so tired and feeling low I forgot to take the information and can’t remember the name. To talk with specialist nurse soon so I am sure that will be be remedied. So off we go again.
Still will remain positive there will be a drug that suits.