Archive through July 28, 2003
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TV ClubHouse: Archive: Shedding Psoriatics : Archive through July 28, 2003

Cinder

Monday, July 07, 2003 - 01:52 pm EditMoveDeleteIP
This was a thread last year and it has since been archived. I decided to start it again because it is something I (and others on this board) continue to suffer from. I am planning on going to the National Conference in August. Any other fellow TVCH sufferers of Psoriasis planning on going?

Halfunit

Monday, July 07, 2003 - 03:00 pm EditMoveDeleteIP
Cinder - I won't be attending, but I am going to a new dermie Wednesday who prescribes biologics, like Amevive. And, my prescription plan covers the shots, so instead of spending $10,000, my out of pocket will be $118. I'd be a fool not to try it.

It is one shot a week, for 12 weeks. I have the chance of clearing for up to a year after the last dosage.

I'll be sure to report back and let you know if he prescribed this for me. I am going in begging and pleading. Bribes may be used too.

Cross your fingers!!

Cinder

Monday, July 07, 2003 - 03:15 pm EditMoveDeleteIP
HalfUnit-
I went to a new derm because I moved. She automatically offered me the biologics drug Enbrel. She wants to take me off the Cyclosporine and she could tell I would be reluctant without a replacement. It is sitting in my fridge now- but I cannot take it until my next appointment (maybe in 3 weeks- but hopefully less)

I will let you now about the conference. I can't pass it up since I am only 5 hours away now. Plus- I want to hear what they say about biologics.

Ginger1218

Monday, July 07, 2003 - 03:18 pm EditMoveDeleteIP
My sister has psoriasis and she suffers terribly. Can you tell me what biologics are? She has tried so much, and nothing seems to help.

Halfunit

Monday, July 07, 2003 - 03:20 pm EditMoveDeleteIP
Cinder - a friend of mine had severe PA with a mild touch of P on her ears. She started taking Enbrel a couple of years ago and her PA is hardly noticable and the P cleared up as a bonus.

And I agree with your dermie in getting off of the Cyclosporine. I currently have topical steroid creams of every strength you can imagine, along with Dovenex and Ultravate and I hate them. I'd much rather have shots.

It's difficult applying ointments and creams all over with 3 cats in the house. Messy, messy, messy!

Cinder

Monday, July 07, 2003 - 03:21 pm EditMoveDeleteIP
http://www.psoriasis.org/research/biologics/

They are the latest development of drugs for psoriasis. Supposedly- after you quit taking them you remain clear for a year or so. This is different from all other medications in which there is usually an immediate return of symptoms-and sometimes the psoriasis is worse.

Halfunit

Monday, July 07, 2003 - 03:25 pm EditMoveDeleteIP
Ginger -

In a nutshell, biologics are produced from human and animal proteins. They target spcific parts of the immune system that cause the disease.

Systemic treatments (like what your sister, Cinder, and me are probably currently on) are synthetic derivatives of chemicals and vitamins. They broadly suppress the immune system to treat the disease.

Biologics are the new wave of treating P. While there is no long term safety data (Enbrel is a couple of years old, and Amevive was only approved by the FDA this past January), the theory is they have fewer side effects than the existing drugs out there.

The downside is they are terribly expensive if they aren't covered with prescription insurance.

ED - thanks Cinder!

Halfunit

Thursday, July 10, 2003 - 07:42 am EditMoveDeleteIP
Well, I didn't get the Amevive like I wanted, but it isn't out of the question either.

New dermie prescribed Elidel, Psoriatec, and yes - Enbrel. I'm happy about the Enbrel - even though I have to give myself a shot every 3 days, I have heard and seen this drug work.

Now I just have to schedule a TB skin test with my family doc (who is on vacation this week, dangit!), and if the results are negative, I'm good to go with the Enbrel.

Dermie wants to keep me on the Enbrel for at least 6 months. If we don't see any results, then he will give me the Amevive, which has to be monitored more closely since it has only been available for six months.

To be continued...

Cinder

Thursday, July 10, 2003 - 07:49 am EditMoveDeleteIP
Thanks for reminding me about the TB test. I will make sure I get mine before my derm appointment so I can start taking it that day. Yeah- I am a little scared about the shots- but I am sure I will get used to it.

Why would the derm prescribe Enbrel and not Amevive. Is there a difference in potency?

Babyruth

Thursday, July 10, 2003 - 09:37 am EditMoveDeleteIP
Hey there Cinder and Half!

Just read this thread and wanted to pipe up that my Ms. Sweetpea has been taking Enbrel for about 2 years now. She takes it for severe rheumatoid arthritis, not psoriasis, but it works the same way. Tones down the out-of-control autoimmune system. It has improved her quality of life about a thousand percent.

A few notes: Be sure to store, prepare, and administer the drug exactly as you are directed. (Keep refrigerated, don't shake it, let it dissolve fully before drawing into syringe.)

When our power goes out (due to those pesky thunderstorms or snowstorms), the first thing I think of is how to keep that expensive drug refrigerated. A couple of times we have put it in a little cooler and taken it to be stored in a friend's refrigerator for a day or two or three until our power is restored.

Also, Very Important: be sure to tell all of your health care providers (including the ER doc if you're ever in there for something) that you're taking it.

Good luck to you both! If you have any questions for me or for Ms. Sweetpea, feel free to ask me here or email me.

Ginger: Have you asked your sister if her doc has talked about Enbrel as a treatment?

Halfunit

Thursday, July 10, 2003 - 10:56 am EditMoveDeleteIP
Cinder & Babyruth

Cinder
I think the dermie wants me to start with Enbrel as it has been available longer - I think doctors are hesitant to try new drugs, especially when their patient (me) knows more about it than they do. Also, I know that T-cell counts have to be taken regularly with Amevive, and that's a pain in the butt. So, by starting with the Enbrel, I think he is hoping it works on it's own - but he is not opposed to the Amevive.

Babyruth
Yes, I knew Enbrel was first prescribed for rheumatoid arthritis (which is very similar to psoriatic arthritis). It was then approved for the PA, and those with P who took it for PA noticed a clearing in their skin. Enbrel is currently pending approval for a P drug right now.

I give my cat insulin twice a day, subcutaneously like I will be doing to myself with the Enbrel. It is also stored in the fridge and I can't shake the insulin either, so I think I'm slightly ahead of the game with my knowledge of the insulin.

My prescription coverage is covering this drug, so my out of pocket will be minimal. What does it cost without prescription coverage? Also, where does Ms. Sweetpea give the injections? My friend switches between her stomach and her hips.

Thanks for the first-hand information. Much better than internet articles!

Ginger1218

Thursday, July 10, 2003 - 02:31 pm EditMoveDeleteIP
No Babyruth, I don't think she has, but she is going to now. I appreciate the help here. She is not suffering so much for the psoriatric arthitis, although she fears it will start - but her skin is not good, she has it on her head, her legs, her arms, and it tortures her. Is Enbrel good also if the arthritis part has not started?

Ginger1218

Thursday, July 10, 2003 - 02:32 pm EditMoveDeleteIP
Also my sister has Hashimoto's Disease which is an autoimmune disease of the thyroid, so maybe this is all connected.

Halfunit

Tuesday, July 15, 2003 - 06:50 pm EditMoveDeleteIP
I had the TB skin test yesterday, and although I'm not in the medical profession, I would say that the reaction is negative (woohoo!). I go tomorrow to have it read professionally.

If all goes well, a simple blood test is next, and then onwards and upwards.... Enbrel, here I come!

Cinder

Tuesday, July 15, 2003 - 07:07 pm EditMoveDeleteIP
Blood test? What is it to test? Well I had one less than a month ago- maybe they tested for the right stuff and it is still good. I am going for the TB test tomorrow because my appointment is on Tues. Darn- I was hoping to start it on Tues- but if I have to take another blood test(which has to be ordered as opposed to the TB test) then I will have to wait.

Halfunit

Tuesday, July 15, 2003 - 07:15 pm EditMoveDeleteIP
Cinder - I don't know much about medical abbreviations (Babyruth??), but it says CBC/CMP on the order... I think it's to get white cell blood counts and the like...

The Enbrel is going to knock my (our) immune system down to NOTHING. I think that, initally, my derm wants to keep an eye on my blood counts to see where my starting point is before the drug, and monitor it during treatment.

I know that if I end up on Amevive, I have to go for weekly T-cell counts.

That's my guess. If it's anything different, I'll let you know!

Ed to add: Did you know that if we get something as simple as a cold that we are supposed to stop the shots? I have forewarned my co-workers that if they come in sick, I'm leaving!

Also, two common side effects are headaches and blurred vision. I had my family doc (who did the TB test) give me a prescription for migraine pills, just in case. I will deal with the blurry vision if I get it.

Cinder

Tuesday, July 15, 2003 - 08:06 pm EditMoveDeleteIP
That is what the Cyclosporine was supposed to do too- but I have had no problems. I did have the CBC (last month)

Babyruth

Friday, July 18, 2003 - 08:21 am EditMoveDeleteIP
Oops! Sorry, Halfie, for taking so long to get back here!

CBC is complete blood count (red, white, other stuff). Your doc has to make sure you're already at normal levels prior to starting the Enbrel. It'll also give the doc your baseline status to compare against as your labwork is checked during the course of Enbrel therapy.

CMP is comprehensive metabolic panel, a set of standard tests, used for many reasons. Again, it's checked prior to starting the drug to make sure your readings/basic health are within normal limits. See this link for further info (this site is a great patient resource!):

Lab Tests Online

You asked where Ms. Sweetpea injects herself, and the answer is, her thighs. Alternates right and left. BTW, maybe she's just lucky, but she's had no side effects from the Enbrel. She doesn't go off it for a headcold, but does for anything worse, like bronchitis. Also, she has to go off it prior to any surgeries. Going off it is pure hell in terms of her RA pain, so she does her best to stay healthy.

Best of luck to you, Half and Cinder! Keep us posted as to how it's going, will you? :)

Ginger, if I read Half's post correctly, it IS being prescribed for psoriasis, as well as for psoriatic arthritis. And, yes, often a person with one autoimmune disorder has others, too. Ms Sweetpea has Hashimoto's...fortunately, the effects can be corrected with oral thryoid meds.
Let us know how it goes with your sister and her talking with her doctor. :)

Ginger1218

Friday, July 18, 2003 - 09:43 am EditMoveDeleteIP
Thanks Babyruth I will :)

Halfunit

Friday, July 18, 2003 - 03:03 pm EditMoveDeleteIP
Babyruth and Ms Sweetpea:

TB skin test was negative, like I suspected. CBC/CMP test tomorrow morning. I don't know how long it takes to get the results, but I will be calling the dermie middle of next week I think.

I will check in again when I get the Enbrel.

My biggest thanks to everyone posting here.

Nathalia

Monday, July 28, 2003 - 03:33 pm EditMoveDeleteIP
My son suffers from this and they say it is hereditary but I know of no one in my family that has this. One specialist we went to in Boston said "just do nothing". We have been to many dermatologists and everything they have ever prescribed for him has made him feel worse. There is one thing that I've noticed that totally clears him up. Our pool. In the summer months he is psoriasis free. I have thought of taking a piece of a chlorine tablet and having him take a bath in it in the winter months. Does anyone think this is a bad idea?

Cinder

Monday, July 28, 2003 - 04:14 pm EditMoveDeleteIP
Nathalia- The popular theory is that it is hereditary- but I only have a maternal cousin in my family that has it. We cannot trace it anywhere.

It could be the chlorine, or it could be the sun. The sun is the most natural treatment. I would do more research on the effects of chlorine on the skin. Anything is possible.

Halfunit

Monday, July 28, 2003 - 04:47 pm EditMoveDeleteIP
What a coincidence - I was going to bump this thread today....

First - Nathalia...

The pool helps your son for 3 reasons.
1. The water softens the scales.
2. The chlorine dries it out.
3. The sun is proven to clear the spots up.

I loved it when I was younger and my dad had a pool!

I can trace the P to my mom, and to her dad. Don't know anything beyond that, but I have read that it can skip generations. It takes some sort of trauma (even something as simple as strep throat) for P to trigger. Has anything happened to your son before he started showing signs of the P?

As for chlorine in the tub, I would talk to a dermatologist about it first. I am 33 and have had P for 17 years and have never heard of chlorine by itself having an effect. I am betting, like Cinder said, it's the sun that is most beneficial. The downside of sun exposure in excess is skin cancer, which can kill you, and P won't.

How old is your son, and how long has he had this?

Now - the good news for me! I have picked up my first 4 injections from the pharmacy today, and go to get my first shot of Enbrel at the derm tomorrow!!!!!! I will be sure to post my progress. I am so excited I could puke.

I know from P message boards that it is going to do wonders for the PA (psoriatic arthritis), and that I am just rolling the dice for skin clearing. It has been a positive side effect for many PA sufferers, and I'm hoping it works on me.

To be continued....

Urgrace

Monday, July 28, 2003 - 05:03 pm EditMoveDeleteIP
Nathalia, if you wish to add something to his bathwater use sea salts. There was no visible outbreak that anyone had identified as psoriasis in my family before I broke out either, but all three of my sons have it in varying degrees. One of them had it behind his ears when he was an infant, but doesn't have any sign of it now! My daughter doesn't have it.

{{{{Half}}}} Whoopee and good luck!

Nathalia

Monday, July 28, 2003 - 10:16 pm EditMoveDeleteIP
Congratulations Half! Half, Cinder and Urgrace thanks for the replies. My son is 11 and he's had it ever since he was a toddler. He also suffers from asthma. Out of three boys he is the only one with health issues. We tried doing the tanning bed at the dermatologists but he was afraid to go in it. I just hate to see him in the cold months with the scaly skin and itching and bleeding and crying because it hurts so much. His legs get it the worst, knees and in between his thighs, but any lubricants always make the psoriasis redder and more sensitive. He also gets it on his elbows, sometimes on his eyelids in the crease. We've basically went with the "experts" advice and do nothing. We once got a spray that was imported from Mexico (can't recall the name) and that totally cleared it up..but it's since been banned in the U.S. During the summer months he is so happy and pain free and totally cleared up. I figured it had something to do with the chlorine in the pool only because he is not in the sun really...that's where I came up with my idea of the chlorine bath.