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Living with Psoriatic Arthritis (PsA)

Update - Otezla


#1

First sorry for the long silence from me. Things have been busy. First things first Otezla is working WONDERFUL for me! In many ways it has given me my life back. I literally felt so awful all the time, it took everything I had in reserves to get through my work day, leaving me running on fumes by the time I got home. For a few years now I have required at least 10-12 hrs of sleep at night. I had resigned myself to the idea that this was my "normal". My energy had gotten so low that I was taking no doze and washing it down with coffee to get through my day, I had talked to my GP about possible RX meds to keep me awake but had decided to hold off til I got to the Rhuemy. Now my energy has improved to the point that I literally can not sleep longer than 6-7 hrs and I wake up refreshed. The pain in my feet, ankles, shoulder, hands ect, is gone - stiffness in my hip and knees gone. Now I have overdone things and caused some brief pain, but a good nights sleep and some aleve and it has resolved. My psoriasis has improved but is not gone yet. I have not noticed any nausea but definitely have loose stools from it. I have Meniere's disease so I can tolerate a certain level of nausea without even noticing. That said the methotrexate made me sick to my stomach and by the time I stopped it I was sick all week long, not just on the day I took it. I have not had any of that with the Otezla. My advice to anyone who starts this drug is be patient, normally I know right away if a drug is working for me, Otezla took a while longer for me to fully feel improvement. It has been a journey with the insurance so I did not get up to a full dose as fast as I should have which may have contributed to the delay in improvement. Personally I think there was just such a fire raging in my body that it took a while to get it under control. The maker of Otezla, Celegne, was very wonderful to work with, it took no time to get the co-pay assistance. They reimburse the pharmacy $200/month for my co-pay each month but had told me at the start that they could get me the med for free if the insurance denied it. It has so improved my life that quite literally my hubby and I are afraid to exhale for fear it will wear off. Since the last time I posted my Rhuemy added the dx of Ankylosing Spondylitis which is no surprise since I am HLA-B27 positive and my mom had AS. The Otezla has not been helpful with that aspect of my arthritis but with all the other improvements I am able to handle this much better. I am still struggling with some neurological issues but I will save that for another post. I mostly just wanted to post about my success with this new drug. I hope this helps anyone considering taking this drug.


#2

Wow Marie that’s awesome . Thanks for sharing. I’m waiting to hear if my insurance will approve otezla. If they don’t I now know to contact Celegne. Thanks.


#3

Great news Marie, I'm really pleased for you and I hope this lasts a long, long time.

You're spot on about having to be a patient patient sometimes and give our bodies and the treatments time to get up to full speed together.


#4

Happy dance, Marie!

What great news, and how nice of you to pop back to post about it. A lot of our members disappear when they start feeling better. We need people like you to remind those who are struggling that people do have success with treatment and they do manage to live well despite this affliction.

Do keep in touch!


#5

I'd second that, especially when it is one of the newer treatments that we have less member feedback on. Way to go Marie :)


Seenie said:

Happy dance, Marie!

What great news, and how nice of you to pop back to post about it. A lot of our members disappear when they start feeling better. We need people like you to remind those who are struggling that people do have success with treatment and they do manage to live well despite this affliction.

Do keep in touch!

#6


I would contact them now. Unless you have exceptional insurance your co-pay will be high. The number is 844-468-3952, the process is pretty quick and easy. I wish you the best of luck and hope it works as good for you as it did me. :-)
Bean said:

Wow Marie that's awesome . Thanks for sharing. I'm waiting to hear if my insurance will approve otezla. If they don't I now know to contact Celegne. Thanks.

#7


Seenie & Jules,

Thank you! It took a while for me to do a happy dance as I was afraid the improvement was a fluke. Since it is such a new drug I figured others would be looking here for member experiences as more people get prescribed. I wanted them to know that it is worth the trouble you have to go through to get it approved. This was the first drug I was excited about because it does not carry the risks many of the others do. Many moons ago when I was first dx'd they gave me a drug that has since been pulled from the market because of fatal side effects. So for me it is wonderful to finally have a drug where you are not weighing the risks of the drug against the risks of PsA, I pray it is a trend. :-)

Jules said:

I'd second that, especially when it is one of the newer treatments that we have less member feedback on. Way to go Marie :)


Seenie said:

Happy dance, Marie!

What great news, and how nice of you to pop back to post about it. A lot of our members disappear when they start feeling better. We need people like you to remind those who are struggling that people do have success with treatment and they do manage to live well despite this affliction.

Do keep in touch!

#8

So happy for you that Otzela is helping you so much!


#9

Great news, thanks for sharing! I a just posted about Apremilast which is Otelza. It’s not available in BC yet but my rheumatologist said it is good for enthesitis and has very little side effects. No liver testing :slight_smile:


#10

It's always good to hear from people who got good results from another med. Is otezla in pill form or injection? I forgot.


#11

It's a pill, Grandma J.


#12

Here is the link to the Otezla site for anyone who wants to read further.


#13

This is so helpful to me. I've not done that well on humira over the past 3 months and my rheumatologist had asked me to think about Otezia, as was good particularly for enthesitis.


#14

On the whole - fantastic news! I enjoyed reading your post so much.


#15

Thanks, Jules--I thought I heard about it on here not that long ago. Yes, it's great news it's working so well for you, Marie!


#16

Good to read your experience with this drug. I am waiting to hear if my insurance will cover it. Been on oral Methotrexate,then injectable form of it. It too made me so sick for almost the entire week.. even the injectable..also tried Humira and did not have good reaction to that either. so I wait....


#17

I just started Otezla today. I am having a lot of pain and swelling, especially with my tendons, so I am very excited to read your post. My insurance did approve it after a long wait, and the plus plan from Otezla is covering my co pay. Sweet. My rhemy is going to keep me on my Remicade as well, as she thinks it might be helping some and doesn't want to stop it. Untested combination, but at this point I am very, very ready to have less pain and feel better! Thank you for sharing and I am so glad you are feeling much better!!!! Oh, and how long did it take to start feeling benefits?


#18

Well after years of suffering from psoriasis for over 30 yrs and now recently PSA, I have a official diagnosis of PSA and psoriasis as of last Friday.

My rheumatologist is starting me on Otezla due to minimal side effects. Awaiting authorization from insurance BC/BS. Hopefully it will be covered. If not, guess I should look in to co-pay assistance thru the pharmaceutical maker Celegne. Any information and or experience with this new drug would be much appreciated.


#19

Continuing the discussion from Update - Otezla:

Received numerous phone calls from doctors office and specialty pharmacies since last Friday. They are FedEx my starter dosage pack overnight so guess I might get it as early as tomorrow. They have to go through a secondary approval process for the maintenance prescription but think that should be fine. Not sure what the co-pay is goi
ng to be with BC/BS but may be zero cost since I called the OTEZLA co-pay assistant number and apparently got approval over the phone within 15 mins after a brief exchange of information and survey. I will let everyone know what the results of my introduction to OTEZLA are.
Cheers everyone!:sunglasses::palm_tree:


#20

I haven’t had any experience with this, but just wanted to say I hope it works for you. 30 years is a very long time to wait!