flare up/giving up

[lovebunny416]

Im a 40 yr old wiyh severe P flareup.I have beento the dr and because no insurance can be on creams.Not doing a thing and know arthritus and i have developed swelling,heat andsevere pain in legs and arms.Hard to walk or be on feet for long time.Dr will not answer my questions if this is due to flare up and what can be done.Right now im left to suffer and im giving up.Very tired of all this and really want to give up. Janice

[GitOverIt]

Welcome to the board.....there are lots of people here in the same boat....with this nasty P.....please don't get discouraged...read what others have done, what they are doing! Maybe you can get some lotions from the discount stores like walmart, target etc......we have talked about a lotion called Nut Butter with Shea butter in it. ...........also Shea butter by Palmer.


Go to "Allthose who suffer from P try this" it tells you about the lotions that are working for some...and very reasonable...like under $5....another place you might want to check out is the "dandelion tea thread"....lots of help there too.
and don't forget to visit the "ALTERNATE THREAD" by kbradley...some good ideas there.

I'm sure others will come on here and tell you how to get more help...maybe a change of docs would be a good start.

please keep posting we want to help:)

[lahdove]

The swelling, fever and severe pain are giving me some concern. I understand that insurance is a problem, but you really need to find a Dr. who will work with you. Please don't give up yet. I went through the same thing in April with my legs. You can't just wait this out and need to call a Dermatologist. A good one will help with samples to get the swelling and fever down.

Please try to find one. The NPF can help you find one in your area.

Good Luck and keep in touch. We want to know you are ok.

Dove

[flora_petal]

Lovebunny, don't give up! Get mad and start fighting! Grease up with anything that worked in the past, or you think might work. Keep it up, all day, every day. You could cheat, and put the stuff on that the DR gave you, and put vasoline on over it. (I know, you are not supposed to, but sometimes you have to do what you have to do). Take advil, aspirin, or whatever safe painkiller you have. May be that will give you some ease from the pain, for a while. We are with you, flora

[MikeK]

Hi Janice,

Welcome to the Board! :cool: I'm sorry that you're going through such a rough time. :( The good news is that you've come to a very special place. A lot of very nice and helpful people post here. It's great to FINALLY be able to ask questions, exchange info, vent or even have a couple of good laughs with people who truly understand.

I agree with Sally. It's time to see a new derm. There are so many wonderful new treatments out there. A good derm should be able to help, by giving you sample medications. You also might want to check out www.needymeds.com . It sounds like a scam site, but several people have posted here that they've been helped by it.

Unfortunately, some of the symptoms that you've described sounds like the beginning symptoms of psoriatic arthritis or PA. Here'a link to the NPF's discussion of PA: http://www.psoriasis.org/facts/psa/ PA is very hard to diagnose. There's no test for it. A PA diagnosis is usually made by your symptoms, a physical examination and by running tests to eliminate other diseases. You probably need to see a rheumatologist, which you'll often see referred to as rheumy's here. A rheumy is a doctor who specializes in arthritis.

You mentioned that you're using creams, but you didn't say which ones. We'll be able to give you some suggestions once we know what you're using.

Have you tried some of the medications -- such as MG217 (here's a link: www.mg217.com) and Dermarest (here's a link: www.dermarest.com) -- that area available over the counter? They're usually pretty inexpensive and may give you some relief.

Sally mentioned the alternate therapy thread. She's right. It has a lot of good ideas, some of which may by helpful to you. Here's a link: http://www.psoriasis.org/forum/showthread.php?threadid=3404

Let me know if you have any other questions.

Good luck. I hope this helps. Keep us posted and please don't be a stranger.

Mike

[PJ Leary]

Hi Janice,

I also extend my most sincere welcome to you. This is a wonderful forum with helpful advice and sincere concern for all who post.

You've gotten some great advice from everyone, and some helpful links from Mike, so please take advantage of the help, then post back with any questions.

I would like to emphasize Mike's recommendation of http//www.needymeds.com

There are many folks here who have gotten some serious help from that site. It may look from it's title like a scam, but it is a very legitimate source.

Also, I encourage you to call NPF and ask them how they can help. There is a dedicated and knowledgeable staff there just waiting for opportunities to help. They are caring and devoted individuals, and you will be enriched just by getting to know them, aside from all they can and will do to help.

Last, I urge you to post here for help and support. There are many here, including myself, who have had very severe disease for a long time. You learn things. We are more than happy to share in any way that can help another.

[ooserrn]

Dear Lovebunny,
Please don't give up, or give in. I know you are 40 years old, but you may qualify for some kind of financial aid, especially from your county or public health or both. County facilities are mandated to use a sliding scale, and many give out samples. Contact the public health department in your county and ask them what you can do. In many cases, there are free, yes free, clinics available for short term relief, and do not hesitate to ASK! That's what we all pay taxes for. And I used to work for a county hospital, we never turned away anybody. Good luck to you dear, I will be thinking of you and hope you get the help you need!

[chaimFL]

The hardest part is the lack of insurance because most of the drugs that can control bad flares can be very expensive to pay out of pocket. If you can get an Rx for a drug that you feel comfortable taking then http://www.needymeds.com can help get you the drugs at huge discounts or even free, but the process can be slow.

Also, again with the proper Rx, some drug makers will provide the drugs directly for much cheaper and again in some cases free. It's a little known fact, but many people have been successful in this manner. Here's a link on the subject - http://psoriasis.org/forum/showthread.php?threadid=5331

There are "replacement" therapies as well...such as instead of getting UVB or PUVA from the doctor, you can go to a tanning salon 3 or 4 times a week (being careful to never burn) and can see signifigant clearing over the course of a few weeks or couple of months.

Hope some of this helps!

[coachG]

Dear Lovebunny............You have gotten some great advice here from some wonderful people. I would like to add that I am glad that you have found this board, we are all here because we care about each other and are willing to share whatever knowledge we have................Please know that you are not alone, and most importantly.......never, never give up......we are here with you!!!

[neese]

Janice,

I'm so sorry you are discouraged it is completely understandable...dealing with p. can really suck physically, emotionally and all the rest.

Please know that we are here to support you.

It's OK to be down....but do allow yourself to find that inner strength to pick yourself up and do the best you can under the circumstances.

You have gotten some good advice from the people that posted above....

Hang in there and keep us updated on how you are doing.

[FlakeyMatt]

You've gotten great advice already and hopefully now you will realize that you are NOT alone. Quite a few of us have been where you are and now how you feel. Let me recap some of the advice others have given and add a few of their own.

1-Try to see a new Derm who will be more sympathetic and try to work with you

2-Attitude:I know it is hard to remain positive but you can get thru this You need to find the strength to hold on and proceed forward.

3-Topicals that helped me while during a serious flair. Locoid ointment, clobetosol propinate (cheap but can't use it for long) for torso arms and legs, elidel for more sensitive areas , olux foam fir scalp and synlar mixed with cetafil cream on top of locaoid ointment

4-Moistruize moisturize moisturize!!!!!!! You really can't over due it and it at least should help with comfort

5-PRESSURE STOCKINGS If you are having probelms with swollen legs/feet use some pressure stockings Put them on first things in the morning when you get out of bed and that should help with the swelling

6-Be sure to drink PLENTY of fluids if are E-dermic and it sounds ike you are heat loss and dehydration could be a problem

Please keep us posted and remember we are your new family.

NEVER give up! FlakeyMatt

[stametst]

Janice,

I'm so sorry you are discouraged it is completely understandable...dealing with p. can really suck physically, emotionally and all the rest.

Please know that we are here to support you.

It's OK to be down....but do allow yourself to find that inner strength to pick yourself up and do the best you can under the circumstances.

You have gotten some good advice from the people that posted above....

Hang in there and keep us updated on how you are doing.


Hey Neese:

I know I have been awfully busy and only imagine you have too, but I have not seen to many posts by you. Are you okay? I always enjoyed reading your post and your different games.

Hope all is well.

[Detroit kayaker]

Dear Janice,
I wrote this poem as a response to another post here this afternoon. You are not alone, so please never give up.

Life is a constant struggle
That we all lose
In the end
A struggle worth fight for
No matter what awaits us
Around the next bend
Along the way
We can still smile and dance
Take a moment just to play
Sleep well
And wake up refreshed
To fight for one more day