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New Member: Stelara Questions #281987
11/07/18 05:51 PM
11/07/18 05:51 PM
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Tab56 Offline OP
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HI Everyone~I am a new member but not new to the diagnosis of Spondylitis. My journey began in my early 30s with erythema nodosum, consistent lower back pain, and swelling/inflammation with the larger joints, especially my knees. Also, my SI joints are greatly affected, more-so on my left, and I get steroid injections on a regular basis. The past few months I have also developed bursitis in the greater trochanteric bursa, on the left side, and cannot get this under control. In my 50s, I developed uveitis and was also diagnosed with mild Crohns/Colitis. Up to this point, I had never been on any medication for SpA. Several medications were attempted, but due to intolerance, or side effects, I just gave up. In 2015 I had L5-S1 surgery for degeneration and spondylolisthesis. Things continued to escalate in my early 60s with the cervical spine and shoulders becoming greatly involved; along with knees and ankles and a great deal of pain down both my legs. The more I walk, the more inflamed I become, and the more I hurt. I had nerve impingement with stenosis and severe degeneration in the cervical area, so had ACDF surgery in July 2018. In 2014 I was placed on Remicade for spondylitis and IBD. This proved to be the best I had felt in years and I had a great run for two years until developing Drug-Induced Lupus from the Remicade. It was immediately stopped and things since then have been downhill. I have been on a low dose of prednisone since June of this year (I am extremely sensitive to medications and cannot tolerate high oral doses of prednisone). It is just barely working since I still have inflammation and I am worried about continuing to take it. But, if I stop the inflammation returns with a venegance and blood test for CRP and ESR escalate. Since I had such a terrible experience for two years from lupus, I became very hesitant and horrified to try another biologic. Also, I was told that I can no longer take an Anti-TNF since developing lupus. Realizing that I am not going to get any better without medication, we elected to try Stelara to hopefully control both the spinal inflammation and the IBD. I had my first loading dose on Oct. 31, 2018(390mg). I was curious if there is anyone that may also be on Stelara? If so, how long did it take for you to see improvement in your inflammatory arthritis symptoms? I have read that the Anti-TNFs seem to work better for arthritis, but I no longer have that option. I am allergic to Methotrexate, so that is also not an option, and to be honest, I am more terrified of MTX than the biologics. Also, cannot take NSAIDS due to IBD. Today has just been one week since my loading dose. I did have some mild side effects after the infusion such as severe fatigue, runny nose, and accelerated joint pain for the first two days. I will get a subcutaneous injection every eight weeks of 90 mg, eight weeks after the loading dose. If anyone is currently on Stelara, I would greatly appreciate any information you may be willing to share.

I am so Thankful to have found this forum!! I become greatly discouraged quite easily. I am 62 years old and constantly worry about the quality of my life. I never thought things would change so drastically in two years. Stairs are now a challenge, grocery shopping, cleaning my home, and anything that seems to require you to bend over, which seems like Everything. It is good to know that I am not alone and there are indeed others who can understand my situation.

Thank you for taking the time to read my story...which I hope is not too long! I look forward to hearing from the group! Thank You!! [align:left][/align]

Re: New Member: Stelara Questions [Re: Tab56] #281994
11/07/18 10:30 PM
11/07/18 10:30 PM
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SouthernMoss Online
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Welcome Tab56. I'm sorry you are having such a difficult time. I've never used Stelara, so I can't offer any experience or advice. Just wanted to let you know you are among friends. smile


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
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: New Member: Stelara Questions [Re: Tab56] #282009
11/08/18 08:36 PM
11/08/18 08:36 PM
Joined: Sep 2004
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Ides Offline
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I have been on Stelera for .5 years. I have AS and Crohn's. Prior to Stelera I was on Remicade 2.5 years, Humira 2 months and developed drug induced lupus like you, and then Simponi for a long 9 year run.

Whoever told you that you can't take another anti TNF biologic because of the drug induced lupus is wrong. I had a long 9 year run on Simponi following DILE and it worked wonderfully until I developed a skin reaction.

Stelera has been wonderful me. I have had no flare-ups necessitating steroids to control. I have had two major surgeries while on it and have healed without issue. I have had no side effects from the every 8 week injections, My GI told me that Stelera is one of the best he has seen for Crohn's. My rheumatologist is thrilled with how well it is working.

I hope you have find relief and have great success with Stelera.
Ides


Besides, AS, dealing with Crohn's, peripheral neuropathy, avascular necrosis,, PAD, and a host of other issues.
Re: New Member: Stelara Questions [Re: Tab56] #282012
11/08/18 10:47 PM
11/08/18 10:47 PM
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Beth Offline
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Yes, I'm on Stelara as well. I do the shot every 12 weeks though, I wish it was every 8. I'm going to have to ask if that's a possibility for me.

I actually can't take the anti-tnfs because I am one of the very unlucky few to get MS symptoms from Humira. So those are all banned for me now, which is rough because it was actually working well.

Stelara works well for me for about the first 9-10 weeks. The last 2-3 weeks it seems to wear off. But, I'm happy because it's been working now for over 2 years. smile Hoping it keeps going!


Beth
Re: New Member: Stelara Questions [Re: Tab56] #282025
11/11/18 12:11 PM
11/11/18 12:11 PM
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pdiddy Offline
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Hi Beth, I'm sorry to hear you now have MS. Like it's not bad enough having AS and then you get thrown another problem! I am on anti-tnfs and reading your post shows the risks of using anti-tnf and certainly provides food for thought. Certainly can understand how difficult it is for people to make a decision on whether to receive this treatment.

Anyway, I read your post and remember reading an article about a reporter here in the UK who had some success with treating MS via stem cells. I know it's expensive and risky but thought I'd post a link for your information, in case you were interested:

https://www.bbc.co.uk/news/entertainment-arts-39092312

You know it amazes me how we still can't cure many of the diseases. My dad has recently been diagnosed with PSP. Another big stinker of an illness but similar to parkinsons there's theory (possibly evidence) suggesting the microbiome may be the cause, like AS.

Sorry OP for sending this thread off-post!

Re: New Member: Stelara Questions [Re: Tab56] #282029
11/11/18 07:34 PM
11/11/18 07:34 PM
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Tab56 Offline OP
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Thank you all for your replies. Beth, will the MS symptoms subside after you have been off the Anti-Tnf's over a period of a few months, or is this permanent? I was told that the DILE should subside within six months after stopping Remicade but it has taken me two years to finally have an ANA-titer that was close to normal. Not to mention the extreme fatigue and many other symptoms that lupus brought along with it. I do hope that things will get better for you...and for all of us.

Do any of you remember how long it took to start seeing benefits for the inflammation/arthritis after starting Stelara? I am just at day eleven after loading dose and miserable. Today it is my left hip/SI joint/lumbar area and my left shoulder up along the trapezius into the upper neck. I took Cymbalta several years ago and it did seem to help with my pain. My rheumatologist gave me a prescription the other day, but due to comments on this medication, and my own personal experience with withdrawal, I am hesitant to start. I do know that I must taper slowly, by bead counting, in order to come off this medication. But, at the same time, I feel desperate for some relief. Also, with the Holidays approaching, I am getting stressed. The past two years was not a pleasant experience for my family. I am hoping to be able to pull off Thanksgiving, but at this point, I don't see how. My husband is very supportive and gets right in the kitchen to help with all the food preparation and shopping, but I will have a houseful with my two son's, their spouse, and my Grandson. They all understand my condition but it still makes me feel terrible, and guilty, that I am not able to do like I used to do, but most importantly, is that I feel like I am not even present most of the time due to pain. I have to excuse myself to my room to nap and rest. I am 62 but I feel like my life is over. The last two years has just taken all the fight out of me.

I know that I am depressed, thus another reason to possibly consider the Cymbalta. But, I over think everything and just talk myself out of it saying that is one more chemical I am putting into my body. After many struggles with antidepressants, I took the GeneSight test and there are not many antidepressants I can tolerate. Cymbalta I must use at the lowest possible dose, but even at 20mg it helped me a great deal. It is so difficult trying to make decisions. I just wish I could be more like some people and not pick things apart and worry constantly.

I have read that it takes much longer to see results for arthritis with Stelara; possibly six months. I can only say I hope that is not the case. Thank you all for your support. Hoping you all have a day that is a little kinder on your bodies:)

Re: New Member: Stelara Questions [Re: Tab56] #282032
11/12/18 09:42 PM
11/12/18 09:42 PM
Joined: Jul 2010
Posts: 756
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Beth Offline
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Oh, no pdiddy and Tab56, luckily when it is medically induced MS it goes away slowly once you discontinue the medication. It took about 6-8 months for all the symptoms to finally go away. I don't bring this up often because I don't want to scare people - because given the opportunity I would still stay on the Humira, the anti-tnfs really are the best drugs for what we have. As a matter of fact, my son takes Humira and he does perfectly fine. My case, is a one is MILLIONS thing to happen, it is not standard at all.

As for me and the Stellara, the first shot worked after about 3-4 weeks and progressively gotten better. Now it wears off week 9-10, but as soon as I take the shot, I'm back to my "usual" better by day 2 or 3. smile


Beth

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