Psoriatic Arthritis

[jennerfennerbenner]

Hi!  I'm new to this site.  I'm 37 years old and have been battling psoriatic arthritis since my teens.
I'm looking for anyone else that is going through the same to get some ingo.

Thanks

Jen

[smittygirl]

I have Reactive Arthritis and Ankoylosing Spondylitis.  A friend of mine has PA and has been taking Enbrel for years and she is in great health now.  I started taking it 14 weeks ago after being so miserable for 4 years.  I feel the best I have since getting sick 4 years ago.  I urge you to speak to your Dr. about it.  Take care.

Sue

[jennerfennerbenner]

Sue,
Thank you for your response.
Do you notice that diet affects you in any way?
Have you had an side effects from the Enbrel, and
do you take anything else along with it?

Again thanks

Jen

[nixh]

Hi Jen

I am 23 and was DX with PA beginning last year. Probably had it since 17 cause that is when my back pain first started. I am currently on Arava. Methotrexate didn't work, was on it for a year. Worked fine in small joints like my fingers but did nothing about my back.  I don't think the Arava is working either. Doctor wants to start Humira end of the year.
My diet doesn't make the pain better, certain things does make it worst though like alcohol.

[smittygirl]

Hi Jen,

Sorry it took so long to get back to you.    Thankfully I have no side effects from the Enbrel.  As far as food, my personal belief and experience is that sugar has a huge effect on inflammation in the body and should be cut out of ones diet.  I don't drink but I can't imagine that alcohol is good for inflammation either, especially anything with sugar in it.  I will look at some of my books, there are schools of thought on certain foods, what they call "night shades" certain vegetables that we should stay away from.  When I was first DX I looked in to all the"natural" cures, diet etc.   Nothing worked because my disease is too severe.  I am seeing a new dr.next month and may be changing to Humira or Remicade.   The Enbrel has helped my lower back and hip pain, but my hands are still swollen and painful.  The one other thing that has a HUGE impact on how I feel is Stress and Lack of Rest/Sleep.    This past week was very very stressful and today when I woke up I felt like the Tin Man and my hands are still swollen and painful and it's 11 pm.   I haven't gotten off the couch all day because I know my body needs the rest, times like today that I'm happy to live alone!   Hope some of this helped.     Take care and write anytime.

Sue    

[barfer]

I've been on Enbrel for about 5 years and it has been an extremely good medication for both the psoriasis and the psoriatic arthritis.  My concern is what am I going to do now that my husband is retired and my health insurance won't cover the cost.  I live in Canada and the cost of this medication is approximately $22,000.00 a year which my husband's company insurance covered but now that he is retired, it will not cover the cost for my lifetime.  I would use up the insurance money in about 5 years.  What is a good alternative for me?

[smittygirl]

Here in the U.S. the cost of the Enbrel is $18,000 a year, a steep cost as well. Because I changed jobs and cannot afford the COBRA payments ( Ins.the employee pays for in between new coverage taking effect) Today is my last shot until Aug. 1 when my new Ins. kicks in.   The first thing that came to mind for you is to contact the company that makes Enbrel..  Not sure how differently things work in Canada but here the drug company is paying the co-pay for the first year so I have no out of pocket expense at all.  I completely understand your concern, I have been on it for only 4 months and am concerned that the 3 or 4 weeks I won't have will take me back to square one.  I'm going to do some research for you this morning and see if I can help you.  The only problem is that I'm not sure the programs they have here in the States will apply to Canada, but I will try!   I will get back with you soon.  It is shameful that these medications that can help people have a better quality of life are only available to the insured or the wealthy.      Talk to you soon.


Sue

[barfer]

I really appreciate your help on this.  I am going to the rheumatologist on Wednesday and hopefully we will be able to come up with a solution.  Your idea of contacting Enbrel about a co-payment is something I will definitely look into.  Boy, am I glad I responded to this post.  

Thanks Jen and Sue.