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Re: Question to those who switched biologics [Re: kglenn] #280592 06/20/18 08:41 PM
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seymour Offline OP
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Originally Posted by kglenn


It is a reassuring study indeed, thank you.

Although with only 4 aTNF left to try, if I'm successful for 2-3 years each it won't take me that far. I'll only be about 42 years old!

This is the scariest thing for me: to have nothing that really works.

Re: Question to those who switched biologics [Re: seymour] #280593 06/20/18 09:20 PM
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Winston Offline
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Stop worrying about things that haven't happened. You don't even know yet that the Enbrel has stopped working. I was in a flare from mid-February until last week. And then -- poof! -- I'm back to normal. I'm really glad I didn't waste 4 months worrying about switching to Humira.

Re: Question to those who switched biologics [Re: seymour] #280594 06/20/18 09:45 PM
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seymour Offline OP
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Well how much time should I spend in pain and stiffness before I know that Enbrel isn't working?

I'm trying, really. I would love to be a non-anxious person.

Re: Question to those who switched biologics [Re: seymour] #280595 06/20/18 10:37 PM
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You have 4 anti-TNFs plus Cosentyx. If, in the worst case, like you said, each lasts only 2 years that gives 8 years on anti-TNFs. Plus another two on Cosentyx. Plus another two if you try both Simponi and Simponi Aria (IV version).

I have done ALL of this. Like you, I worried a lot about running out of options. When you start biologics at 15, your options diminish fairly quickly, especially since at the time, only Enbrel, Humira and Remicade were given to kids.

I can tell you honestly that my anxiety made everything worse. It made me hyperaware of every site of pain. It made me think I was flaring when I wasn't. It can cause muscle spasms. It can make minor pain into major pain. It caused many sleepless night. It has taken years of working with a therapist and now I'm better at bracketing that anxiety. The thing is, it's out of your control. You have no idea how long these drugs will last. But I can tell you this for sure - there are several more biologics in the works. I see Dr. Reveille in Texas, who is a big AS researcher. He always tells me what is the next option coming down the pipeline.

You have 10 years or so before you even have to worry about what is coming down the pipeline. And it could be much longer. There are people who last between 5-10 years on a single biologic.

Right now, you aren't even sure you're in a flare. Honestly, from reading your other threads, all of your symptoms sound muscular (shoulder blade pain for example is often from a muscle spasm in that area). Your inflammatory markers are perfect. If you are really worried, I would encourage you to see your rheumatologist and have her examine your joints and ask for an MRI of your spine.

And most definitely keep seeing a psychologist.

Anxious people can work on becoming less anxious. For me it has taken a lot of time and I'm not always good at it, but it's pointless to worry about stuff you can't control. And anyway, I can guarantee that in 10 years, there will be other options.

I have ZERO FDA approved options left now. Do I worry? YES!!! Do I let it take over my life? NO! I'm going to enjoy this biologic while it works, instead of focusing on the fact that it might fail one day and then I'll have nothing left. I have tried Enbrel, Humira, Remicade, Simponi, Remicade (higher dose), Simponi Aria, Humira (again), Cimzia and Cosentyx, all with different combinations of DMARDs. I'm 24 so I have a long time to go.

Re: Question to those who switched biologics [Re: seymour] #280596 06/20/18 10:40 PM
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Another option might be to take a short course of steroids and see if that helps the pain. Sometimes a steroid taper will calm things down for me and then I don't have to switch biologics.

Another option might be dose escalation. In psoriasis, Enbrel is given at higher doses - 50 mg twice a week for 3 months. You could try that. I have done that with every single biologic I have been on - escalated the dose or frequency before moving on to something else.

You could also add an NSAID if you aren't already on one.

Re: Question to those who switched biologics [Re: seymour] #280597 06/21/18 04:34 AM
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seymour Offline OP
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Thank you everybody. Sorry for being annoying and irrational.

Re: Question to those who switched biologics [Re: seymour] #280598 06/21/18 02:34 PM
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I apologize if my last comment to you was a bit harsh, but a comment my rheumatologist made to me when I was still in the diagnostic phase of my disease, when we still weren't 100% sure what was going on with me and my anxiety was at its peak, has really stuck with me. He actually raised his voice at me in frustration and said, "Stop trying to give yourself things you don't have!" It helped, and it still helps when I'm feeling a little anxious about things.

Re: Question to those who switched biologics [Re: seymour] #280599 06/21/18 03:05 PM
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seymour Offline OP
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It’s OK Winston, I annoy myself too. I’m not crazy you know. I do see that I’m completely overthinking this and blowing everything out of proportion.

See my question is this: how long should I wait? How long should I tolerate daily pain and increasing stiffness until I know it’s time to switch?

I don’t want to switch prematurely. But in only a month I’ve already started losing some ROM in my neck again. I don’t want to wait until I have a CRP of 60 and fusion before switching to a more effective treatment.

I really don’t know how I should approach this. Anxiety is one thing but there is very real AS symptoms returning too. I’m not a crazy person. Not yet anyway 🙂

Re: Question to those who switched biologics [Re: seymour] #280602 06/21/18 06:39 PM
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CBMom's daughter, you have a lot of wisdom. You should set up your own account so we can tell when it's you posting. smile

Seymour, the question of how long to wait is not really something we can answer. We can share our own experiences, as others in this thread have done, but the final decision has to be one you and your rheumy make based on your own circumstances. I don't think your rheumy is going to let you get to a CRP of 60 and fusion before she changes your treatment plan. smile So try not to stress over that for now. As the old saying goes, don't borrow trouble.

In the meantime, try taking an NSAID for a while if you aren't already and can tolerate it. Or take arthritis-strength Tylenol. Not just here or there, but on a regimen so that you have a steady amount in your bloodstream. Try some of the OTC stuff like Salon Pas patches (with or without lidocaine), Aspercreme (with or without lidocaine), BioFreeze, etc. Or try a prescription topical NSAID like Voltaren gel. Ask your rheumy or your primary for a PT referral for your neck. Ask whether a TENS unit might help. Someone made a post recently about the Quell units, you might check into those too.


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: Question to those who switched biologics [Re: seymour] #280604 06/21/18 08:07 PM
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seymour Offline OP
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My GP prescribed co codamol 30/500mg, two pills every 6 hours when needed.

I'm not too big on codeine so I only took it twice. It masks the pain but it makes me feel a bit groggy.

I took a lot of Aleve and Ibuprofen but it makes my stomach hurt after a few days so I'm taking a break. My GP also prescribed a PPI.

I take 2 arthritis-strength Tylenol every 8 hours most days. It helps a bit but not much.

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