Howdy folks.
I just took my third injection of Stelara last Tuesday. I was so hopeful it was going to work, but so far it has been a dud. I am so ready for some relief ! Does it need more time? Would I notice a difference by now if it was going to work for me ?
I'm seeing my Rheum doc Monday for a knee injection, and I am sure I will have questions for him.
I'm feeling kind of hopeless :(
I hope that the Stelara starts to work for you. I haven't used it, but I have heard good things. The knee injection should do you some immediate good, though. I know when I had mine the relief was very freeing, if temporary.
This is from the fact sheet on Stelara on the National Psoriasis Foundation's website: "In clinical trials, about 43 percent of people experienced a 20 percent improvement in arthritis severity scores" at 12 weeks. That doesn't preclude further improvement after 12 weeks, and the researchers are pretty strict in their assessments of improvement. It's not hopeless yet, mimiB. :) Not at all.
Hey there ! I just wonder about how long the Stelara it takes to "kick in" once you inject it because, honestly, I actually feel worse than I did before I injected it. Seems like I remember having a flare after the last injection, too. SO weird. I am starting to think I am just nuts.
I have had two Stelara shots so far and feel rather lousy. My stiffness has increased and I have flared in my hands and feet...
Hi Honeybunny, I'm just curious, did you experience the flares within 7-10 days after the injection? Have you seen this report? http://archderm.jamanetwork.com/Mobile/article.aspx?articleid=1754980 "Despite early results of a phase 2 ustekinumab trial suggesting efficacy for both plaque psoriasis and psoriatic arthritis, our case series raises concern that ustekinumab may unmask or aggravate joint disease in selected patients. These data underscore the need for further investigation of ustekinumab’s effects on psoriatic arthritis."
For me, small improvement at 7 months, more noticeable at 1 year.
Hi Mimi, I don't recall if the flare is that closely related to my injections but I know my hands and feet have gotten much worse. It seems that the first two shots seem to have had little effect on my arthritis and has actually worsened. I will definitely speak with the Rheumy about it at my next appointment in about a week. I have been considering a return to Humira which seemed to be the best biologic I have tried. I hope you have more success with Stelara and get some results soon.
And thanks for the link in your response, I had no idea and will ask the Dr. about it.
When I reported to my rheumatologist that I I suspected Stelara might be making me worse and that I had flared immediately after the last two injections, he took me seriously. I said "perhaps it is just a coincidence" and he said "I don't believe in coincidences, I think we need to abandon this course of action and seek another." He mentioned defaulting back to Humira or trying Simponi Aria if we can win the fight with my insurance company to cover it. I hope you feel better soon, too !
Well I saw the Rheumy today and mentioned the flare and Stelara injections. He said it's early in treatment with Stelara and to take the next shot. :(
He said he just returned from a conference in Boston and that all the new drugs are along the same lines as Stelara. That it is better than TNF meds because it targets the cause of inflammation more specifically in PsA disease. It targets interleukin-12 (IL-12) and interleukin-23 (IL-23).
I explained the flare and he suggested I stretch my hand more and referred me to podiatry for my feet.
I am seeing my doc again tomorrow. I feel pretty crappy. My doc really feels I would do better on a TNF inhibitor. I have had better, though not great, response to them than the IL-12 /23 drugs. We are trying to get me approved for Simponi Aria because the nfusion can be adjusted to my weight, as I am rather "fluffy" these days. Simponi is FDA approved for PsA but the infusion med is not. Go figure !
I hope your feet feel better soon. Mine hurt really bad and I get this weird tingly buzzing feeling in them at night. The podiatrist that I saw was not so great, he just tried to sell me very expensive orthodics. I passed on that, but did buy some really good supportive shoes ( NAOT ) with removable footbeds and they are super comfy. Let me know if your podiatrist has a better idea !
Omg, HoneyBunny, he said you need to stretch your hands more? Really? Wow! I would’ve been so p.o’d if my dr told me that and to continue the stelara even tho it was making you feel worse. And those statistics don’t sound so great. I don’t understand how they think that’s better than TNF blockers! I was so sick of having those achy, stiff hands I had to constantly be stretching…enbrel took care of that right away! Good luck–I hope either stelara starts working or your dr gets you on something that does.
Do you know the difference between Stelara and Humera. I am waiting approval to pay for it sorry you feel hopeless, are you in any pain?
Stelara has a different mechanism in that it targets interleukin-12 (IL-12) and interleukin-23 (IL-23) and inhibits tumor necrosis factor. They are both classified as biologic medications but they work differently.
I'm breaking up with Stelara and going back to Humira. The werid thing about my case is that the Stelara helped my nails and inverse psoriasis but made the rest of me feel like I played Wipe Out and came out the biggest loser ! At least on Humira I was able to work out on the recumbent bike. On Stelara I am a quivering mass of pain.
Glad to hear your dr is listening to you. Stelera is probably fine for psoriasis but not so great for PsA. Enbrel has decreased my psoriasis and PsA by about 80%. I still have the ugly fingernails and knees with stubborn psoriasis that don’t seem to ever improve. I hope humira is the answer to if not all, MOST if your problems!
Thank you ! Me too. How does the Enbrel help with fatigue ? That is such a bummer of an issue for many of us.
Enbrel actually gave me more energy and I had no fatigue–except when my back hurts, which is now, and when I had that bad cough for 5 weeks. But those kinds of things are bound to cause fatigue.
They are both biologics, Stelara is focused on IL 12/23 and Humira is an anti-TNF medication. They are both focused on inhibiting the process of inflammation.
Pain is a daily issue these last 9 months. I have been diagnosed for about 2 years and it's been a battle to find the right medication for me. Fortunately I tolerated most all the medicines well it is just they don't seem to control the arthritis.
I don't feel hopeless just frustrated...I live in a city with only a few Rheumy's to choose from. Mine is less than sympathetic at times...
Hope you get your medication soon and feel better.
I am awaiting to see who is going to pay for it. I am looking forward to hopefully getting better. The pain is not bearable with. My right knee, left arm and my chest hurting so bad. They put me on one pain medication , was at max per day, no help so to help they changed to another stronger medication and it barely works . I look forward to be able to walk proper again
it took a good 2 months before my daughter saw any relief in Stelara . and now she says she feels like a new women .. give itr time