Multiple Sores

[bmcreppel]

Hi Guys,

I have at least 100 sores on my body, Crohn's and fibromyalgia. Do you suggest a rheumatologist first and has anyone had this many sores for psoriasis or PA and how long did Remicade or one of the other drugs take before they started going away.

I have no insurance as I mentioned before, but have tried the Charity Hospital and called the insurance commissioner's office about the pre-existing conditions. They weren't able to assist in any way. Does anyone live here in the New Orleans area and can recommend a good rheumatologist?

Thanks,
Barb

[LoriASoCal]

Are you having joint pain as well? Without treatment my body is about 80-85% covered usually in very large apendage sized plaques, with hundreds of smaller ones. However, some people with PA report no P at all.(go figure) Remicade worked very quickly for me. I noticed a difference in days. With a combination of remicade and mtx my psoriasis is very minimal and my PA is more manageable. I see a rhuematologist for both my skin and joint problems. Also, a handful of other doctors.

[bmcreppel]

Yes, I can hardly do anything from the joint stiffness and pain. The pain is what awakens me at night.

Barb

[LoriASoCal]

then seeing a rhuemy would be good. usually it takes a while to get a first appointment-there is a shortage of them and a long line of us.

[docmks]

Hi Barb, So sorry to hear that you are suffering so. Did you mean that they won't help you at Charity? (I lived in Lafayette for 6 years so I understand the system). Surely they have a dermatologist or rheumatologist at charity? Also, some of the drugs they use to treat could be good for your crohns and your psoriasis. They happen to be expensive, however, and the place to call, if they get prescribed, is usually the pharmaceutical company. Often they have programs for patients who can't pay. Have you tried just showing up at the ER at charity? there is also a place on this site where you can search for a doctor in your area. It is not a recommendation of doctors, but rather a list of docs who express interest in treating PA and P patients. Please let us know how you are doing and perhaps somebody from New Orleans will chime in. Good luck, MK

[bmcreppel]

Hi Guys,

Thanks for all of the support. I tried to get in to see my rheumy and she wouldn't accept me because I no longer have insurance, so I went back to the dermatologist. At the Charity in Bogalusa, I was having to start all over again and at least the shot of steroid she gave me helped with the pain. The coal tar was used. That stuff is nasty. Does anyone else use this and find that it helps? She will be starting me on MTX by injection next week, so wish me luck. Oh, and thank the good Lord above that someone was gonna throw away some MTX and she kept it and promised me a bottle because she knows I don't have insurance. She gave me some samples of some topical creams to use, too.

I was too sick to make the haul to Charity doctors. They only have a rheumy and a derm in Baton Rouge which is a good hour from my house and since I am suffering from PTSD also, I wasn't up for the task. I went to a doctor at the Charity in Bogalusa, which is about an hour too, but didn't feel like going there every other week.

Does everyone's P get worse when they are under a lot of stress? or does it come and go all of the time?

Barb

[docmks]

Hi there, I am sorry you are having such a rough time getting the help you need. IN my case, my P always gets worse with stress. And nowdays, it doesn't even have to be a lot of stress or necessarily even "bad" stress. What I mean by that is, I can have a new project to work on. And even if it is something I want to do my P will get worse just because I have to exert more effort. Hope you get the help you need soon. I am very familiar with that part of the country, so I know what it involves to try and get in somewhere to get help you can afford.

[KellyPSA]

I also get many many lesions from Psoriasis, not just big plaques...It was originally diagnosed as guttate psoriasis...thought to be brought on by Strep.....

I generally see a Rheumatologist more often than the dermatologist...As soon as I developed joint problems, I started seeing Rheumatologists...I relate to your insurance issues....It is very frustrating and stress provoking...which is a vicious cycle..you get sicker when you are frustrated by stress and you need the docs more than ever....

Good Luck finding the care that you need.

[MikeK]

Hi Barb,

Welcome to the Board. :cool: Nice to meet you. I'm sorry to hear that you're battling multiple health issues and that you no longer have insurance. :(

Since you have both Chron's, psoriasis and PA you might want to look into Remicade (www.remicade.com) because it's approved for all three diseases. Since you have Chron's disease, you probably should try to see a gastroenterologist.

Since you don't have insurance, try to get some samples of whatever meds your doctors are prescribing. I'm going to give you a link to a thread that was started by Leslie (Momtotwogirls). She took the time to post links and information about some assistance programs that she came across. Here's a link to Leslie's thread: http://www.psoriasis.org/forum/showthread.php?t=12379. I added links and information about programs that people have either told me about or that have been discussed here on the board. (There's even a link to a post by Alyssa Brown, from the NPF's Staff, giving us information about the assistance programs that the NPF knows about: http://www.psoriasis.org/forum/showthread.php?p=260016#post260016.) We don't know very much about most of these programs (some of them say that they provide co-pay assistance), but I can tell you that Jessica (stormechaser) was able to get Remicade for free thanks to a program called www.needymeds.com. (It sounds like a scam site doesn't it?) Miranda (LadyFraser) was able to get assistance for Enbrel, from www.needymeds.com, while her husband was transitioning from being self employed (with no insurance) to working for the government (with excellent benefits). She shared her experience in this thread: http://www.psoriasis.org/forum/showthread.php?t=3979.

I'm aware of at least one person who is getting assitance for Remicade through Remicade's assistance program. Here's their contact information:

Infliximab (Remicade)
Centocor, US REMICADE (infliximab) PATIENT ASSISTANCE PROGRAM
P.O. Box 221709
Charlotte, N.C. 28222-1709
866 489-5957
866 489-5958 (fax)

Source: http://www.rheumatology.org/public/acrast.asp?aud=pat.

I just came from the Crohn's and Colitis Foundation of America's website; they live two clinical trials for Chron's disease in Metairie:

http://www.ccfa.org/trials/?rm=display_trial&center_id=1715&doAnchors=1;

http://www.ccfa.org/trials/?rm=display_trial&center_id=1720&doAnchors=1.

They're double blind studies, which means that neither you nor the doctor will know if you're getting medication or if your getting a placebo. You may not qualify because of your multiple health issues and there's always a risk from being involved in a clinical trial, but a clinical trial is a great way to access medical care from a doctor who is also a researcher. That means that he or she will be up on all of the lastest treatments, so it's something that you might want to look into.

I hope this helps.

Good luck.

Keep us posted.

Mike

[cajungirl]

Hi Barb! I'm so sorry you are going through such a rough time. I'm from Houma (not far from you). I'm going to PM you with the name of a wonderful Rheumy in New Orleans. I see him and love him! He's done wonders for my P and PA! If you need anything at all please message me!