New guy asking for some advice please.

[Nelson]

Hello. I've been without health care for nearly fifteen years and unfortunately that's just about when bouts of severe psoriasis started cropping up on my sides, lower back, stomach, elbows, knees, legs, and now hands and forearms. My self treatment has been trying to stay on an alkaline diet (which I struggle to stick with for long periods and 'cheat'). I also drink as much water as I can stand (usually 4 to 6 8oz. glasses daily), and recently started trying either one teaspoon of bacon soda or Bragg's apple cider vinegar with water daily to help create a more alkaline chemistry in the body. With all the above failing to stop flare-ups I've managed to get a supply of 0.05% betamethasone dipropionate skin cream which no longer is working well to stop the redness and flaking on the troubled spots. Many of the worse spots have remained for months on end now and they're increasing in size. I believe the use of the cream has thinned my skin as I'm bruising easily and the skin on my knees actually splits if I squat quickly or land on them in a fall. Needless to say I'd better stop the cream. My problem is I don't know what to do next for the escalating inability to clear the troubled areas. I believe I have either psoriatic arthritis, rheumatoid arthritis, or both because I've developed extreme joint pain in the legs, shoulders, and arms over the past two years and a few of my fingers and toes have developed nodules (swollen joints that don't go away) and no longer bend. One pinky is now deformed and bent totally out of shape from the swelling. I guess by now you've noticed I'm a mess. I stumbled upon this site and I hope others will have some advice for me as I honestly can't afford a primary doctor or health insurance, and I don't have medicare yet. Any suggestions? Thanks Nelson.

[Caroline]

Hi Nelson,

Welcome to Psoriasisclub. That at first.

Out of your description it seems that you are suffering from psoriasis and psoriatic arthritis at the same time, which is a situation that happens more. But I am not a doctor so I cannot make a diagnoses of course.
They can be treated but basically you need a doctor to help you with that.
But I read also that apparently you cannot afford that.

What I would suggest, as the psoriasis is obvious, is to start a systemic medication with DMF. And than start to use that in the way Bill does this. He makes his own medication.
At least than you have a chance that it may get better.
I will point Bill to your post.

Caroline.

[Bill]

Hi Nelson,

I am not sure what restrictions the US imposes on dimethyl fumarate importation, but I got mine from a Shanghai supplier using Alibaba.com. In raw form the drug is extremely cheap and effective (it costs me 13 cents every four days currently), but the side effects may be a bit harder to handle. It needs to be taken with plenty of food and fluids, and on no account would I advise taking the drug without being monitored. Dont misunderstand me as I think that the drug is fantastic, but it can have catastrophic consequences which are very easily avoided if you are checked regularly.

All the best,

Bill

[jiml]

Hi Nelson and to the forum I hope you will find some helpful information here . You have certainly got problems. With no health care plan.
I'm sure you will get some good advice here as to some of the natural things that might work. I see you have been told of bills method which he uses as he is in Australia and they don't have the drug he needs. So he has a DI Y solution
Not one I would recommend but if I were desperate I would go that route.
In the meantime I would suggest looking at modifying your diet if you look at this thread it will show you what's good and what isn't The anti-inflamatory food pyramid or just work your way through the natural treatments boards here Natural Treatments For Psoriasis
I hope you get relief soon but there are few options if you don't have health care
Have you tried throwing yourself at the system and asking for help at a doctors office or social security. You must push for proper treatment. There must be a way in America in the 21 century where you can apply for help when you have a chronic disease....because that's what psoriasis is.
I'm sorry I can't offer more advice but I wish you every success in you search for relief
And hope to see more of you on the forum where the least we can do is offer support and a place for you to talk
Jim

[Bill]

Hi Jim,

When you start getting psoriatic arthropathy you do not want to muck about with diets. Inaction can result in permanent joint damage. But I agree with you that Nelson should be doing whatever he can to get specialist treatment and very probably a systemic drug therapy.

Cheers,

Bill

[jiml]

Hi Jim,

When you start getting psoriatic arthropathy you do not want to muck about with diets. Inaction can result in permanent joint damage. But I agree with you that Nelson should be doing whatever he can to get specialist treatment and very probably a systemic drug therapy.

Cheers,

Bill

I agree Bill he needs professional help but I don't know the American system perhaps Kat or mataribot may have some advice

[Fred]

Hello Nelson to Psoriasis Club.

It does sound like psoriatic arthritis, but like Caroline said we are not doctors so you do need to see a specialist to get a proper diagnoses. But as you say you cant afford health care so you do have a problem, lthough I don't understand the system in the USA I'm sure there is help out there.

I seem to remember having this conversation before with someone else from the USA, and I got the impression that it was a matter of seeking advice and asking for help. Whether some people just don't know or they won't ask, studies have shown that approximately one third (45.7 million) of uninsured people in the US are actually eligible for government insurance programmes such as Medicaid/Medicare, but have elected not to enrol.

I can point you to the top 3 Bio treatments websites and they all offer advice and support on costings:

Humira (adalimumab) Say on their website "If you cannot afford your medication, contact: [web]www.pparx.org[/web] or call the toll-free phone number (1-888-4PPA-NOW) for assistance."

Enbrel (etanercept) Have a dedicated payment support page: [web]https://www.enbrel.com/pay-for-ENBREL.jspx[/web]

Stelara (ustekinumab) Also have a dedicated payment support page: [web]https://www.janssenprescriptionassistance.com/stelara-cost-assistance[/web]

So my opinion would be get in touch with those three and see what they have to offer, the Bio treatments give very good results. If you would rather not go the Bio rout then it may be worth asking around if there are any other treatments for psoriasis that offer financial help. (I don't know of any others myself)

I would say leave Bill's idea alone unless you are 100% sure you know what you re doing, it works for him and I'm sure he would happy to advise you. But it's not something you should take on lightly, should you want to read up on it it's here: Bill's pure dimethylfumarate thread

Please do come back and let us know how you get on as your input could help others in the future.

Regards.

Fred.

[Nelson]

Thanks to everyone for the advice and good leads. It's really kind of you to share your input. Advanced Psoriasis gets to the body and the mind as you tend to isolate yourself from the rest of the world from embarrassment. I'll definitely follow up on these suggestions especially where I might seek health care assistance. Thanks again, Nelson

[Fred]

Thanks to everyone for the advice and good leads. It's really kind of you to share your input. Advanced Psoriasis gets to the body and the mind as you tend to isolate yourself from the rest of the world from embarrassment. I'll definitely follow up on these suggestions especially where I might seek health care assistance. Thanks again, Nelson

Good luck, and please do report back.

And if you're about later Jim is buying everyone drinks in the [Group Specific] Board tonight.

[jiml]

Thanks to everyone for the advice and good leads. It's really kind of you to share your input. Advanced Psoriasis gets to the body and the mind as you tend to isolate yourself from the rest of the world from embarrassment. I'll definitely follow up on these suggestions especially where I might seek health care assistance. Thanks again, Nelson

Good luck, and please do report back.

And if you're about later Jim is buying everyone drinks in the [Group Specific] Board tonight.

Yes all are welcome Nelson I will be serving drinks and having a BBQ around 7:30 our time if you want some light amusement just click on this link [Group Specific]