Does anyone know? Need answers.

[haileysura]

For the past year I have lived a health nightmare. It would not be so bad if I knew what was going on. I have had psoriasis for several years now. A year ago developed arthritis in my body. I am only 36. It is painful. It is in my jaw, shoulders, neck, hips.elbows, wrists, fingers, knees, ankles and toes. It seems all at once, my psoriasis, arthritis will flare up. When it gets real bad, I will run a low-grade fever and get sores on my throat and a whitish spots. I have been told I need to see a rheumatologist and have had referrels. I don't know why, but they keep rejecting me. I have tried Parkland rheumatology and have called every rheumatologist in the dallas area. I have medicaid parkland healthfirst plan. I could see a rheum if i had cash money, and i could probably come up with the 250$ for the visit. There is no way I can pay for all the testing, though. I feel like I will never get help. I have been so discouraged, I said to myself, I will just take it and never try to get better, but then it gets really bad and i try to get help. The docs just give me pain meds, sometimes antibiotics cause of all the infections, or steroids for all the inflamation.They say go see a rheum. but i don't know how to get one.
I want my life back. I have kids. I want to go see their games without getting sick, I want to work. I want help. I guess I am venting and feeling sorry for myself today cause of my throat. Can anyone stir me in a direction for help?

[jennybyc]

You have a classic case of psoriatic arthritis. And getting Medicaid to pay for the treatment is probably why you can't find anyone to treat you. Enbrel is now the drug of choice and it means $2000/month for the shots. The docs end up buying the medication for the shots and then get reimbursed and if it doesn't cover their costs, they don't want to buy it. You may need to see of you have any kind of prescription drug assistance program in Texas so you can get your own pre-filled syringes.

Talk to your regular doctor about the rejections you are getting and ask for their help in getting treatment. Ask about getting Enbrel on Medicaid. See if they can help you.

You need to figure out what the problem is...financially. Is it that Medicaid won't pay for Enbrel? Then look into the drug companies assistance program. There are ways to get around these problems.

I've battled these diseases for years and they are frustrating enough without the pain in the a$$ that comes with dealing with resistant docs. Good luck and I hope you get relief.

gentle hugs.............Jenny

[Pastrychef]

Yep, that sounds like a classic case of psoriatic arthritis to me as well. This is what I have and my presentation was very like yours; psoriosis for years (over 15 in my case) and then the development of arthritis symptoms. I was 34 when the first arthritis symptoms hit; my kids were 13 and 10 and I'm widowed. I feel your pain!

I can't give you much advice re. costs and insurance and such; I'm in Australia and we have a totally different medical system, drugs and dr visits are both heavily subsidised by the government. But here's my advice, for what it's worth.

First, YOU CANNOT IGNORE THIS. I remember how much pain I was in before I began treatment - I cannot imagine how bad you must be feeling right now. Your psoriosis and arthritis flare at the same time because they are caused by the same inflammatory process. The disease is not just causing you pain, it is destroying your joints. If you do not get treatment, they will eventually become so deformed that you will not be able to use your hands and feet effectively. This would be dreadful beyond measure and it can be prevented, but you must get treatment.

Step 1; talk to your GP and find out what s/he CAN do for you. I understand you are being urged to see a rheumatologist because they are the specialists in this area; however, if you explain the money issues to your GP they may be able to treat you themselves (not ideal, but better than nothing). Or they may ask that you have one consultation with a rheumy to get a formal diagnosis, then take over treatment from there. Or there may be special grants or subsidies or they may be able to talk to a rheumy on your behalf.

Step 2; educate yourself about treatment options. NSAIDS and corticosteroids and no good as long-term treatment options; they are good for flare-ups but have too many long-term side effects. Google DMARDS (disease-modifying anti rheumatic drugs) for lots of info.

Useful tip which may save you money; in the USA the first treatment option seems to be Enbrel and other injectibles (so I've gathered from message boards. May be wrong!). In Australia all patients are first treated with oral DMARDS; methotrexate is considered the gold standard. Many patients do very well on 10-15mg of methx a week, and nothing else except for steroids for the odd flareup. Injectibles are ONLY considered if patients are still having symptoms after taking tablets. Can your GP prescribe methotrexate, Arava, suflasalazine or plaquanil? It's worth asking.

Hope this helps. Good luck.