I am new to the group and new to support groups. I am not sure what I am looking for. I am having severe flares right now that I associate with the weather (maybe naively). I am having severe L ankle pain, stiff and locking fingers and my shoulder is trying to freeze. I have been on NSAIDS, methotrexate, Embrel, humira and Otezla. The Otezla helped the best but I cannot afford it as I have no insurance.
I’m so sorry to read that you’re currently flaring 🙁 What kind of weather affects your PsA? I noticed on another thread that you were looking to contact Otezla about patient assistance, were you able to get through to them yet? Either way, we have some information on the financial side of accessing medication, which I hope will be helpful: https://psoriatic-arthritis.com/living/paying-for-cost-of-psa-care/
I hope you will find this community a support. We’re here for you!
Thanks for the welcome! The best I can tell, it is major changes in Barometric pressure that bother me. I have worse problems on the leading edge of a front and get better on the trailing edge. It starts to effect me about 1-2 days ahead of the barometric change.
I contacted Celgene Corporation (maker of Otezla) about assistance. They were less than helpful. (polite way of saying indifferent to my issue and rude). I explained my situation (unemployed, no insurance, living off draw from 401K, etc.) I also explained the severity of my issues and the effect it was having on my life. I was told that I made too much to get any assistance even though to buy Otezla outright would take half my income.
Food for thought:
Celgene Corporation total revenue 2017 : $14.8 billion
Otezla Revenue: $1.5 billion (increase in 17% over the last year)
R&D: $2.7 Billion
Tax rate: 18%
Celgene Corporation officers annual compensation for the top 5 officers: $37,935,336.
You’re definitely not alone in finding the pressure changes an issue, @acknud – I know many in the PsA community say that they can predict the weather better than the weatherman/woman!!
Ugh 🙁 That is really disappointing about the patient assistance. It makes me so sad that money is even an issue when it comes to accessing treatment. It may be worth reaching out to the National Psoriasis Foundation: https://www.psoriasis.org/navigationcenter – they should be able to determine whether there’s any other way for you to access the Otezla. I really hope something comes up. Hang in there!!