Appreciate Y'All!

[kellymomcars]

I can't express my appreciation for the information and joy that y'all bring to my day! I am a newbee to NRAS and Beyond Psoriasis, and feel so grateful to have my thirst for information satisfied any time I have a question -- I can usually find real answers on HealthUnlocked (not much help in reading predictable pharmaceutical pamphlets - "blah, blah, blah").

And special thanks to the frequent posting people in NRAS! There aren't many days that go by without someone posting a hilarious take on a difficult day -- some of you really are very naughty... my kind of people!

Just a little background about me. I am an almost 60 year old female living in the great state of Texas. I have been diagnosed with psoriatic arthritis as of December 2020. I'm on my 3rd biologic -- Cimzia and Humira gave me horrible hives, and I have just finished my loading doses of Cosentyx with luck so far.

I have been so very fortunate to have been health issue free my whole life until this diagnosis. It has been a quick learning curve with so many health issues added to my plate -- mixed incontinence, cervical radiculopathy, erythrocytosis, to name a few. Now waiting to see a Neurologist because the bottom of my feet tingle all the time -- what's up with that?

I find it very frustrating the lack of knowledge that doctors (outside of Rheumatologists) have about RA and PsA. There are so very many affects chronic inflammation can have on a body, and each problem is treated as it's own issue without thought about the treatment of the cause -- just test, medicate and operate away. Enough of my soapbox...

So, I felt the need to let you know that I appreciate y'all. You are my peeps!

[Batty1]

Hi Kellymomcars,

I was diagnosed with PSA in 2018 after suffering 2 years with crippling pains that started up after my thyroidectomy in 2016.

I have been on Cosentyx for 3 years and now bridging with Otezla …. Cosentyx cleared my skin beautifully but really did nothing for my psa which would explain the bridging of Otezla.

Do yourself a huge favor DO NOT stop any biologic medication cold turkey your PSA will come back 10xs worse and make sure to keep and eye on your thyroid health.

I developed small fiber neuropathy (sunburn sensation without a sunburn) with no known cause tops of my feet burn and I can not wear socks and shoes most of the time and this issue started about a year after my thyroidectomy and YES I do have occasional tingling sensation in my hands …. Which is why I say to keep and eye on your thyroid health by having your thyroid levels tested (TSH, FT4, T3, FT3 and antibodies) don’t let your doctor ignore the thyroid I feel these biologic drugs play a role in thyroid health.

[kellymomcars in reply to Batty1]

So much good information. That's what I love about this sight!

I have had my thyroid somewhat tested, but need to ask for more.

When you say you bridge with Otezla what do you mean? Are you alternating every other week? I see you live in the US -- how in the world did you get that approved by insurance?!!!

And you are right, stopping a biologic while fighting with insurance to get on a new one did make my symptoms so much worse. Mine is primarily in the knees, hips, and neck. When I stopped, now I have it also in my hands -- I tell you, losing hands for everyday tasks is terrible!

I'm seeing the neurologist at the end of October for the tingling feet bottoms. It's not painful - just weird. My primary doctor said it could be caused by blood sugar being too high. I'm not diabetic, but my glucose has creeped up to around 110 too this year. (I don't eat added sugars and am on a low carb diet). Soooo, now I'm wondering if I need to find an endocrinologist? Do you find that doctors are not so interested in something that isn't massively painful? I want to stop things from getting to that point if I can.

Thanks so much for the info!

[Batty1 in reply to kellymomcars]

I get zero resistance from my health insurance actually they don’t bat and eye HOWEVER because my actual health care sucks and a lot of my issues probably could have been avoided had they taken my original health issues serious I might not need so much pharmaceutical help … maybe my insurance feels bad for me, who knows.

I also see a JohnHopkins rheumatologist who specializes in PSA (Dr. Orbai ) and she has prescribed both the otezla and Cosentyx and I believe most insurance companies are less likely to question JHU doctors. I also pay out of pocket for her $$$ and my JHU Endocrinologist $$$ .

Because I developed thyroid cancer while on Stelara (had thyroid issues prior) and Im 100% convinced Stelara caused the actual cancer (no doctor will confirm this or deny it). Im unable to take lot of the other biologics because of the cancer so the only thing I was able to do was bridge my treatment …. I take Cosentyx 300mg once per month and Otezla 2xs per day and it’s definitely improved my pains. My PSA attacks my tendons anywhere a tendon attaches to bone and my feet get the majority of my pains (tops) bottoms are fine but it’s crippling. Before I met my Rheumatologist I could hardly walk… 5 year nightmare and my overall health has deteriorated.. sad

You definitely should see a diabetic specialist …. Read up on side effects of biologics from others experiences its pretty crazy ….

“All magic comes with a price”

[kellymomcars]

I'm convinced insurance treats symptoms and is not at all about prevention. Gotta be in bad shape before they are willing to take action. I actually had my primary care doctor tell me that if the constant tingling was not impacting my life, she didn't care if I looked into why.

[LorraineChavez]

I have had PsA since 2001. I have taken Enbrel, Humira, Cimzia and now Cosentyx. Each for about 7 years each except the Cimzia which caused chronic UTIs. Then I got cancer and was told NO biologics until 5 years (breast) cancer free. Well it only took one month without a biologic for the rheumatologist to change her mind. She chose Cosentyx because it works a different way than those previous biologics I had been prescribed. You can Google those processes, but long story short. I have ALWAYS been prone to getting hives. For no known reason, sometime they are the size of dinner plates and I have to go to the ER to get a benadryl shot. Cosentyx had been prescribed at a subpar level just one 150 mg injection a week. I am now 3 years cancer free and the dose has been increased to 150mg injection 2 times a month. I have had MAYBE a 30% reduction of my PsA symptoms 100% of my psoriasis. But I can barely walk, my feet are f*cked, finger, wrists, back, neck horrible! I am in chronic pain. If this higher dose does not start helping at the 6 month mark, I am going to demand a change. If you can recieve remission on it great for you! I think it is nearly placebo.

[kellymomcars]

That's discouraging, but I see the trend. Consentyx helps psoriasis, but not so much PsA. I need help with PsA. Cimzia made my joints feel great, but the hives were terrible and terrifying -- saucer size all over, lips swollen, body just crawling. Rheumatologist said she had never heard of that reaction (really?). Her suggestion was to take another shot and see if I got the same reaction. As if... Got a new rheumatologist immediately. Keeping my (sore) fingers crossed.