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onto Simponi. feeling more than discouraged.
#272807 12/09/15 07:19 PM
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elenef Offline OP
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after Humira for 5 months with no benefit. Enbrel for 3 weeks (which actually started to help my pain) but had a severe allergic reaction. and now Cimzia after only the 5th day after my first loading dose...i am having heart palpitations and hot flashes/sweats so the Dr is calling it quits on it too. starting the approvals for Simponi next.

i feel hopeless, frustrated and fed up. what if i am "allergic" to all the TNFs?
i just want something to work and to not have to face scary or intolerable side effects. does this even exist?


Last edited by elenef; 12/09/15 07:24 PM.

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Female / 43 yrs old
~ Pain started in 2000
~ dx w/Cervical Myofascial Pain Syndrome in 2003
~ dx change to USpA/AS in Feb 2015 (HLA-B27 negative)
Currently taking Gabapentin 300mg/nightly, Meloxicam 15mg/daily, MTX 7.5mg/weekly, Folic Acid 3mg/daily, Biotin 5000mg/daily, and Flexiril & Norco only when absolutely needed.
tried Humira--no success, Enbrel & Cimzia--severe allergic reactions.
started Simponi infusions Jan 2016.

Re: onto Simponi. feeling more than discouraged.
elenef #272808 12/09/15 08:11 PM
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Hi Elenef-

I'm so sorry you aren't having more success with the medications.

Have you tried NSAIDS? I have USpA and was diagnosed in August, even though I've had symptoms for 25+ years. Before starting Humira in October, I had been on a slew of NSAIDS (4 different prescription ones) over the past 10 years to find out in August that the one that helped the most was: over the counter Aleve! But I had to double the dose (4 over the counter tablets a day) to get enough pain relief- about 75% relief- (in addition to continuing a muscle relaxant, Tramadol and Lyrica). The reason I decided, and my doctor agreed, to try Humira is because of fatigue- I was in bed literally all day at least twice a week. I can manage pain, but I can't function with fatigue. The Humira has definitely lifted the fatigue, that is the first thing I noticed after reduction of heel pain, but I still have to take Aleve to help with some of my joint pain- but Humira can take a few months to work.

Does the methotrexate help you? I don't know what the dosage recommendations are, but it might be worth asking your doctor about dosage and see if maybe that is something you can change (going up). Maybe a combination of an NSAID and MTX would help? I thought all NSAIDs would have similar responses, but they do not. Vioxx, Voltaren, and Celebrex did nothing for me, Meloxicam helps a little bit, but Aleve is the one I respond the most to (and in fact, this is the one that helps a lot of people with SpA, which I didn't know until my rheumy told me).

What type of allergic reactions have you had- I know that the Humira pen has latex in the pen cover, and people with latex allergy should avoid the pen and use the syringe form. I don't know about the other TNF's, but do you by chance have a latex allergy?

Don't give up hope. New medications are in the pipeline that aren't TNF inhibitors...


Last edited by Sheep1; 12/09/15 08:37 PM.

48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009
Re: onto Simponi. feeling more than discouraged.
elenef #272810 12/09/15 08:49 PM
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The needle covers for the Humira syringes have latex too. I've seen latex-free Humira on websites for other countries, but not on any US sites (although it's been a while since I've looked). The needle covers for the autoinjectors and syringes for Enbrel, Cimzia, and Simponi all contain latex too. I don't know if any of them have latex-free versions.

It might be worth asking your doctor if latex allergy could be an issue. I think in the past most of our members with latex allergies have ended up on Remicade because it's an infusion rather than an injection. I believe you can get Simponi via infusion also.

Sheep is right, there are new medications being developed as we speak. Cosyntex (secukinumab) is already approved for psoriasis, is in trials for AS and PsA, and is not a TNFi.



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: onto Simponi. feeling more than discouraged.
Sheep1 #272811 12/09/15 08:51 PM
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elenef Offline OP
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i had been on high doses of aleeve and prescription ibuprofen prior to moving to meloxicam as the nsaid of choice. really no effect for me on aleeve or ibuprofen.

unfortunately i wish it was as easy as what works for one person works for another, but it doesn't.

i don't have a latex allergy---or at least i never had before when i have been exposed to latex. i started having severe hot flashes/sweats, heart palpitations, chest pain, extreme fatigue (like 10x my 'normal AS fatigue'), eye irritation, and an increase in sharp pains in my SIs.

so fed up.

i just recall there are only 6 or 7 TNFs and i'll be starting my 4th soon. i am feeling like they might not work for me at all, but i'll still keep trying in hopes they do.



------
Female / 43 yrs old
~ Pain started in 2000
~ dx w/Cervical Myofascial Pain Syndrome in 2003
~ dx change to USpA/AS in Feb 2015 (HLA-B27 negative)
Currently taking Gabapentin 300mg/nightly, Meloxicam 15mg/daily, MTX 7.5mg/weekly, Folic Acid 3mg/daily, Biotin 5000mg/daily, and Flexiril & Norco only when absolutely needed.
tried Humira--no success, Enbrel & Cimzia--severe allergic reactions.
started Simponi infusions Jan 2016.

Re: onto Simponi. feeling more than discouraged.
elenef #272812 12/09/15 09:19 PM
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Southernmoss- I didn't realize the cap of the syringe also has latex. That is not what I understood from my rheumy- she asked me specifically about latex allergy when trying to decide whether to prescribe the pen or injection. However, I may have not understood her reasoning for her questioning, perhaps she was trying to determine whether to prescribe Humira at all for me. I will clarify next time I see her- it is a bit worrying if she doesn't know that Humira syringe also contains latex.

Elenef- don't give up, you are right, we all respond differently, and the TNF inhibitors all are formulated differently, and you still have a few more to try. It sounds like your rheumy is doing a good job though and that is a HUGE plus. Best wishes...

Last edited by Sheep1; 12/09/15 09:21 PM.

48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009
Re: onto Simponi. feeling more than discouraged.
elenef #272813 12/09/15 10:19 PM
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I've been unable to tolerate probably 80% or more of the medications I've been prescribed over the years. It really sucks when that happens and its a drug that has been helping with symptoms.

I hope you are able to find some that end up working for you that you can tolerate.

Have you been on any of the drugs like plaquenil, asacol, avara, imuran, or azulfidine? I ended up with side effects to all of them except Imuran, but they did help the tendon pain. Imuran really helps the pain in my hands for some reason.


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