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Re: Question to those who switched biologics [Re: seymour] #280532
06/04/18 11:09 PM
06/04/18 11:09 PM
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seymour Online OP
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Thanks everybody

Re: Question to those who switched biologics [Re: Cake] #280533
06/04/18 11:49 PM
06/04/18 11:49 PM
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seymour Online OP
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Originally Posted by Cake
If you want to get a jumpstart on your therapy, here is a great free on-line program to help people with anxiety about health problems. I think you would get a lot of out this. Its likely the exercises in this program will be similar to what your therapist will recommend, as its based on cognitive-behavioral therapy principles.

http://www.cci.health.wa.gov.au/resources/infopax.cfm?Info_ID=53


This is pretty well done and helpful, but it's funny how they mention "I have arthritis" as an example of over-worrying...

It seems a bit more suited for those who aren't diagnosed with chronic conditions, but it's helpful anyway. Thanks fo sharing.

Re: Question to those who switched biologics [Re: seymour] #280536
06/05/18 07:55 PM
06/05/18 07:55 PM
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seymour Online OP
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I would like to thank everyone who took time to support me while I wallowed in self-pity and anxiety. I know we all have this disease here so it's probably frustrating to watch someone panic and repeat the same things over and over again.

This painful episode which I am slowly conquering was essential to my grieving process and my acceptance of AS. I feel like I had it "too easy" so far, being put on a biologic early on that erased 90% of my pain for 6 years. I never took the time to absorb the fact that pain in some form or other will be my companion forever, and that effective treatment does not mean being pain-free.

I need to learn to live with pain as a "white noise" in my life. Do the most of good days and allow myself to have terrible days, even terrible weeks sometimes as disease activity and treatment efficacy fluctuate.

I guess I should consider myself lucky to have such a great response to anti-TNF and look forward to another treatment that will work as well as Enbrel did for years.

I will try to stay positive and apply what you all told me.

Thanks to all, sincerely.

Re: Question to those who switched biologics [Re: seymour] #280537
06/06/18 02:17 AM
06/06/18 02:17 AM
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WhiteCell Offline
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Gratitude.

"Tears falling into Mountain snow.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Question to those who switched biologics [Re: seymour] #280538
06/06/18 01:55 PM
06/06/18 01:55 PM
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We all have to wallow now and then. The important thing is to get back up afterwards and move forward. Hang in there.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Question to those who switched biologics [Re: seymour] #280544
06/09/18 05:44 AM
06/09/18 05:44 AM
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My first biologic was Remicade. After 6 infusions, rheumy and I called it a failed experiment. After the loading doses, which might have had a tiny amount of success, he was gradually increasing each dose by one vial each time till the last dose was 8mg/kg. At that dose, which did not do anything positive, the side-effects kept me of work the next day as I felt like I had flu. Then it was on to Enbrel, which worked for a day or two after the injection (weekly). Then I asked if doing the twice/weekly dosing would help and he agreed to try it. That was my introduction to pre-filled syringes. Now I will only use pre-filled syringes when available (long-winded reason omitted). It was successful despite the lower dose per shot. Weekly dosage is the same. It was stopped when we thought it wasn't working any longer, roughly 9 months after starting it. In hindsight, this was probably a huge flare rather than the drug not working any longer.

Then came Simponi, which never quite lasted for a month. Gave it up after 8-9 months. Then came Humira, which decreased my WBC so far that rheumy stopped it. It made me sad because that drug was probably the most successful biologic I've ever used.

Then came Cimzia. Stayed on it for 2.5 yrs. It worked early on but I had a flare in early winter (roughly the same time as when I was on Enbrel). Since at the time there were no others to try, I stayed with it and after 3-4 months, that flare eased and it was back to working well again. I only stopped when I had a case of pneumonia. When my PCP had me get a chest x-ray to make sure I was cleared up after the antibiotics were finished, the x-ray showed a nodule. It took quite a while to get that worked up and about the time I was going to be cleared to get back to the Cimzia, I fell and broke 8 bones in my foot. Took a long time to heal and I opted to go to Cosentyx for the next med (hubby was irrationally worried about me being on a biologic at the time, but he's eased up on that worry now that he's on a biologic also for PsA!).

Cosentyx worked but caused me a lot of gut issues and I gave it up after 4 months and went back to Cimzia. I've taken 2 of the loading doses.

In answer to your questions--thankfully I had better success after the first one. And better results after the first successful one. If for some reason Cimzia does not work as well as it did the first time, I think I'll try Enbrel again before moving to something new. Personally, I think it's a crap shoot as to whether one of them will work or not. This is for PsA and I've been on MTX through all of these biologics.

Like is said above, sometimes we need to wallow. Sometimes we just have to trust that it will all work out. Sometimes we don't know what we should do and just take something on the hope that it will work for us and that if it doesn't, there are other choices. Hope you find the med that works for you and have the strength to get up the next day to try again.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Started Cosentyx in Oct 2017
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia
Re: Question to those who switched biologics [Re: seymour] #280546
06/09/18 03:41 PM
06/09/18 03:41 PM
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seymour Online OP
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Hi rumble,

I did not know a flare could last many months. I thought most flares were over in a matter of days or at least in a few weeks. It makes me reconsider my desire to switch from Enbrel to another TNFi. Since my blood tests are impeccable and my range of motion doesn't seem impacted, maybe I'm just having a flare and would prematurely stop a drug that works...!

I called my rheumy two times for an emergency appointment in the last two weeks. Her secretary offered an appointment on July 9. I asked her if she had anything sooner cause I was in pain. She called me back and now my rheumy wants me to do back x-rays...

I think my calling twice and asking for an appointment sooner set off her alarm. I don't think my 4/10 pain warrants x-rays... Truth be told I'm actually scared of having x-rays cause I don't want to know how my disease has progressed. Since I've had no decline in function and ROM and am on a biologic anyway, I frankly don't see what x-rays would bring aside from statistics and setting off my anxiety again.

My rheumy probably thinks I'm having intense pain and wants to see if I have something mechanical that could explain it since my blood tests and ROM are good... This is anxiety for you. I feel ashamed now.

Re: Question to those who switched biologics [Re: seymour] #280549
06/11/18 12:30 AM
06/11/18 12:30 AM
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Hi Seymour. Sorry I didn't respond sooner but I was on vacation. If your CRP generally tracks with your disease activity, it's a good tool. For me, Sed Rate tracks with inflammation so my rheumy stopped measuring CRP and started measuring Sedrate instead. Everyone is different.

I am glad you are talking to someone about your anxiety. It is normal to have anxiety or depression related to diagnosis with a chronic illness. Yes depression and anxiety can cause pain, but as someone pointed out so can lots of things. People without diseases get bad backs too, ya know? smile

The recent suicides of several high-profile people show just how serious an illness depression and anxiety can be. Hang in there, don't need to apologize for asking for support on a support forum. We are here for you. We have all likely had periods of panic and doubt over this. Keep sharing and please let us know how you are doing. We all care.


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: Question to those who switched biologics [Re: seymour] #280550
06/11/18 05:17 PM
06/11/18 05:17 PM
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seymour Online OP
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Let's just say that having a certain level of back pain is becoming my new normal. I'm getting used to it although obviously I'd rather be well. My anxiety and depression have lowered. Past three days I've felt near-normal. Today is a bit tougher but not too bad.

I have a rheumy appointment June 26 so I'll adress my concerns with her. If my blood tests are normal again and my range of motion is still OK then frankly I don't think I can convince her to modify my treatment so I'll just deal with this new pain.

My main concern is fusion but I can't predict this based on pain or anything so if it happens then whatever. I just can't afford to spend my life being scared of my disease progressing. It's a waste of emotional energy.

I'm still hoping it's just a big flare and that things will settle down.

Take care.

Re: Question to those who switched biologics [Re: seymour] #280554
06/13/18 08:00 PM
06/13/18 08:00 PM
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seymour Online OP
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Does anybody have back pain that feels like muscle knots? I have mid back pain near my sides, kind of below the shoulder blades and It feels like knots or back spasms or some kind. It doesn’t feel like it’s inflammatory or comes from the actual spine.

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