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Allergic to Stelara #282423 01/16/19 10:44 PM
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Tab56 Offline OP
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Hello Everyone~I wrote a while back and had started Stelara. I had my first infusion without any reaction. But, as the weeks wore on, I noticed my face would turn bright red at times, and eventually was more like a day to day occurrence. I did not think much of it; thought maybe it was rosacea or from the low dose of prednisone that I am on. With my first 90mg injection, I did not feel any shortness of breath, or swelling of tongue etc. It was later that night that my face turned bright red and began to swell. It started just on the left side and then advanced to the right. It felt and looked like I had second degree burns. We went to ER and they confirmed it was an allergic reaction. I was given steroid injection and Benadryl with instructions to continue Benadryl and continue my low dose prednisone. After the steroid injection wore off, I began to have a rash on my chest/breast and red dots appeared on the roof of my mouth that looked like measles. I still get flushing of my face at times and will take Benadryl. I have also noticed that my joint pain and muscle pain have been far worse since starting Stelara, accompanied my headaches and fatigue. I had my injection on Dec. 28th, so this Friday will be three weeks.

Upon seeing my rheumatologist, she is discontinuing the Stelara. She mentioned either Enbrel or Humira. Just to give a little info about myself, I got drug-induced lupus from Remicade and was very sick for over a year. It took me two years to finally decide to try another biologic. Everything just got to the point it was overwhelming and I was, and am, finding it more and more difficult to face each day. I am worried about trying another Anti-TNF due to the fact that I did develop lupus. There is no way I can endure that again. I will be 63 next month and the last two years have worn me down.

I know it is basically a guessing game and trying medications until you find something that works. MTX was tried several years ago and had reactions to that and also Plaquenil and sulfasalazine. I get online and read all the reviews for these medications and it just scares me to death. You feel like when you do make a decision, it is the wrong one because you are taking such powerful medication. But then you compare your quality of life and who wants to live like we have to every day?

So, now I need to decide which medication to try, once again. I do have very mild Crohn's that is associated with the disease, so I am thinking the rheumatologist first choice may be Humira. Anyone like to share any information with me if you have been on either of these drugs or both? I know we are all individuals and it works differently for everyone. I have extreme joint pain. My worst areas are my neck(which I had ACDF in July), my left shoulder, lumbar area, SI joints, right knee, ankles, and sometimes my wrists. Also the ligaments on the top of my feet will hurt. My last ESR, even with the Stelara dosing was 40. I know that is not extreme, but I was thinking it would finally be within normal limits for once. Also, is anyone aware of the washout period for Stelara?

Anyway, sorry for the long post.. I am one of those individuals that literally pick everything apart and worry, instead of just making a decision and sticking with it. Oh, the time I have wasted. Thank You all for listening!

Re: Allergic to Stelara [Re: Tab56] #282424 01/16/19 11:02 PM
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Per the Treatment Guidelines, when it comes to IBD and spondylitis, any of the TNF monoclonals are equally preferred. so I believe that would be adalimumab, certolizumab, golimumab. infliximab is in that group, but I imagine you wouldn't do infliximab again :-)

Do you have a AS diagnosis? Stelara, MTX Sulfasalazine and prednisone is not actually indicated by the FDA for AS. perhaps those were for other issues (IBD, PsO)?

Thank you for sharing your experience. Sorry to hear what you have been through.

I hope you find a good treatment plan soon.

kindest,


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Allergic to Stelara [Re: Tab56] #282425 01/16/19 11:41 PM
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Your allergic reaction sounds awful. I would be hesitant too if I had been through all of that.

I have been taking Humira for 5 years. I have had zero reactions, not even a welt at the injection site. (And I am one who would get huge welts from mosquito bites.) I am very blessed that it works well for me.

I have a friend with PsA who had a reaction to Humira and changed to Enbrel. This has been probably 8-10 years ago and she is still going strong on Enbrel.

Per two or three sources online, the half-life of Stelara is 15-32 days. I don't know how long to completely clear your system.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Allergic to Stelara [Re: Tab56] #282427 01/17/19 12:07 AM
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I'm sorry you had such a bad reaction. I can see why you are alarmed.

I don't think that drug-induced lupus is a common reaction to Humira. I have been on it a very long time and I've never reacted to it. Enbrel gave me increasingly large injection site welts as times wore on, and by the time I switched each of the last 10 or so injection sites would swell every time I injected. I switched however because it stopped working, though the two may have been linked.

I know it's a tough decision to make and I think your doctor is the one to guide you here. You may want to ask about having something on hand at the house just in case you have a reaction. My understanding was always that the infusion drugs seem to have a higher risk of reaction than the injection drugs, possibly because of the delivery method, I'm not really sure.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: Allergic to Stelara [Re: Tab56] #282433 01/17/19 04:28 AM
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Tab56 Offline OP
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Thank You All for the kind response. I was just diagnosed with AS after 30 years. In my early 30s, I was told I had a sero-negative spondyloarthropathy. In my 40s, I developed uveitis, which I had for over a year. Ended up getting intraocular lenses at a very early age due to cataracts from the steroid drops. I have always had problems with my back for as long as I can remember. Things really seemed to escalate in my 50s and have just continued to go downhill. I was diagnosed with Crohns's in 2001, but it is very mild. I usually have an intestinal flare either before or after large joint involvement, mainly my knees, and also lumbar spine. Thankfully, once the joints calm down, generally so will the intestines. I was given Plaquenil for drug induced lupus but it did not work well for me; had too many side effects. Thus I was placed on prednisone and cant seem to get off. Every time I try to taper, things just flare up. I am hoping that once we find a biologic that is compatible, I will finally be able to wean off.

I see my rheumatologist again Feb. 7th and we will make a determination, at that point, between Humira or Enbrel. I am pretty sure she will push for the Humira since it also covers complications of Crohn's, even though my major issue is my spine and large major joints. At this point, I am certainly not aware of which would be best for me...again involves going through the loading doses and waiting. I need to put my fears aside, if possible, and just be Thankful that we have choices and medications that are available for us.

Thank You all for responding and Wishing you all the Best.

Re: Allergic to Stelara [Re: Tab56] #282471 01/19/19 10:27 PM
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While I haven't experienced medication reactions to the level you have, I do feel for you as I have always been prone to side-effects, and it has made it very hard over the years to find drugs I could tolerate and that worked. After what you went through with Stelara and Remicade, I can see why you'd be reticent to try another med like those. There is just no way to know with this stuff. Everyone is on an individual journey. For me, I've been on Enbrel for 18 years. Briefly we tried Humira back in 2005 or so just to see if I could get some additional benefit but I got huge red rashes from it at the injection site. So went back to Enbrel and have stayed on it since. It still works, but I also need other drugs in addition. I couldn't tolerate plaquenil or sulfasalazine, but they did help my symptoms. I'm on a low dose of MTX because if I go higher I get intolerable side-effects, and as it is, I get horrid side-effects from it (mood and anxiety), but the pain relief I get from it is so strong, I can't get off it. I also take Imuran which probably helps my whole system, but strangely, the place I feel direct pain relief from it is in my hands.

best wishes to you~~


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