Ginger1218 | Tuesday, July 29, 2003 - 05:19 am     My sister is the only one in my family to have it or have had it. This summer, she has been going to the beach a lot, and the combination of the sun and the salt water has been helping her a lot. |
Cinder | Tuesday, July 29, 2003 - 05:34 am     How could I have forgotten about the Dead Sea Salts? It was this site that recommended them to me last year. I have noticed that when I take frequent baths with any kind of moisterizer in it my skin is better. Nathalia have you visited National Psoriasis Foundation They have wonderful information just for kids. Sorry to hear he has it so bad at such a young age. My psoriasis started very small in my teens and gets progressively worse each year. Before I started Cyclosporine it was almost the the degree your son has it. I have been lucky and have not had the arthritis yet. Half- my Enbrel has been sitting in the fridge for a month now. I was unable to start at my last appointment because I was in a hurry and the derm was running late. I will start the Enbrel August 13- after the NPF conference. |
Halfunit | Tuesday, July 29, 2003 - 09:09 am     I get my shot in 2 hours - I will let you know how it goes. |
Nathalia | Wednesday, July 30, 2003 - 01:46 pm     I took my son today to the Dr's for his yearly physical and told her about my suggestion of putting a tiny bit of chlorine in his bath water and she totally agreed that it would not harm him and gave me the go ahead to try it during the winter months. Cinder-Thanks! I will check out that site. Dead Sea Salts? Do you get that at your local pharmacy? Thanks again for everyone's input! |
Cinder | Wednesday, July 30, 2003 - 04:26 pm     There are many websites. You can search for dead sea salts on the search engine. I have seen "sea salts" at stores but have never been convinced they were "Dead Sea Salts" They are usually more expensive also. I have ordered from this company before because they seemed the cheapest to me. They take A LONG time though. www.privatebodyspa.com Let me know if you order from somewhere else and you are happy with their service. |
Halfunit | Wednesday, July 30, 2003 - 04:46 pm     First shot complete! No side effects!! I think my fingers hurt less (PA), but that's probably my head playing games with me!!! Next shot: Friday! |
Halfunit | Wednesday, July 30, 2003 - 04:59 pm     OK... I have a hang up with my skin, but thought #1 - I'm amongst friends, and #2 - it would be interesting to keep track of any clearing that may occur. So... here is a picture of my legs. I have P all over, but I can easily take a picture of the leg area!
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Halfunit | Wednesday, July 30, 2003 - 05:01 pm     Let's try that without a flash.
That's not a great pic either, but you get the idea. |
Cinder | Wednesday, July 30, 2003 - 07:16 pm     Half- I took pictures- without a digital camera (stupid stupid) before I went on Cyclosporine. I should have paid the $50 to buy a cheap digital camera- because none of the pictures came out. I took them weekly to show the progress. (DH was out of town for 4 months with the good camera) My psoriasis cleared up 95% with the Cyclosporine-but the year is coming up and I cannot stay on it. When I miss a dose- which is often since it is twice a day- I can tell the difference. Anyways- I feel your pain. Keep taking picturs so you can track the progress. I have none on my legs at this time so I cannot partake. (I refuse to share a picture or my stomach on the internet)I had smaller patches- but more spread out that yours. My cousin said she felt less pain very soon after starting the Enbrel. For Enbrel will be more to maintain the clearing that Cyclosporine has done so I can get off of it. SO- you took one Wednesday and then again on Friday- or Tuesday and Friday? Twice a week- or more? |
Halfunit | Wednesday, July 30, 2003 - 07:32 pm     Cinder - I will have a shot each Tuesday and Friday. Those pics above are just a sampling of what I've got, but like you, lol, I refuse to post some pics! I know that Cyclo has done wonders for people, and that is great that you are 95% clear! I hope the Enbrel keeps you at that level. Don't be discouraged if you rebound a bit from the change in meds, but give the Enbrel time to work. Now... when are you going to take it??????? |
Cinder | Wednesday, July 30, 2003 - 07:38 pm     Not until the 13th. I have half a mind to just take it without going to the doctor- don't worry- I won't- but I already have it. I can't believe they couldn't just squeeze me in to show me how to do it. Friday are you doing it yourself at home- or going to the doctor? |
Halfunit | Wednesday, July 30, 2003 - 07:45 pm     Friday will be at home. I have to go back on 8/13, just so the doc can see me and make sure I'm still alive (and charge my insurance for an office visit ). I will post more later, when the BB conversation dies down. Too much file locking!!! |
Cinder | Sunday, August 10, 2003 - 02:57 pm     Just got back from the National Psoriasis Foundation Conference. Enbrel is not yet approved by the FDA for psoriasis- only for psoriatic arthritis. Amievive(sp) is the opposite- only currently approved by the FDA for psoriasis- not the arthritis. The benefit of prescribibg Enbrel however is that it can be administered by the patient. The Amievive is administerd IM or IV- and therefore must be done in the doctors office. I am sure insurance compannies LOVE that. |
Ginger1218 | Sunday, August 10, 2003 - 03:36 pm     My sister saw her dermatologist yesterday. He is not really on board with biologics. He does not believe that they are so helpful. He also said sometimes it can make it worse, and for her he is not happy with side effects it can cause. He is about to start her on this new laser treatment. He said that they are having very good success with it. She has to do it twice a week for 3 weeks for each area. So, when she starts, I will let you know what happens and how it works. |
Cinder | Sunday, August 10, 2003 - 03:40 pm     Interesting how every dermatologist has different views. Biologics are so new that there is no conclusive evidence- but everyone this weekend who had been prescribed bioloics said it was helping. Lasers were barely mentioned- and I never heard anyone say they had that treatment. Let us know. |
Ginger1218 | Monday, August 11, 2003 - 03:57 pm     I will. You are right, every dermatologist is different. I think her doctor tends to not try things that can have bad side effects, until he knows for sure that it works. But he said he has seen very good results with the laser. So, only time will tell. I will keep you informed. |
Halfunit | Wednesday, August 20, 2003 - 08:43 am     Cinder - what is going on with you and Enbrel? I just took shot #7 yesterday, and I'm doing good. Ears are clearing up, and the joints in my hands don't hurt as much! Let me know how your doing!! |
Cinder | Wednesday, August 20, 2003 - 02:24 pm     I am actually getting worse, but I will blame that on the tapering off of Cyclosporine. Darn pharmacy never gets in before I run out either. Luckily since I had the Enbrel sitting at home so long- I can order that ahead of time (there has to be a 2 month time span between prescriptions) so I ordered the Enbrel even though I still have 2 weeks left of medicine. I am on shot #3. I still have only done it on the tops of my legs. No infections- just tiny bruises- but heck I got a bigger one when they drew blood for my labs the other days. I am glad to hear you are noticing a positive difference so quickly. That was how the results were when I began Cyclosporine. I am SO SICK of taking the cyclo though. At least the Enbrel is only twice a week. |
Halfunit | Wednesday, August 20, 2003 - 02:51 pm     Cinder - I'm sorry that you are getting worse, but I have to agree that it is the withdrawl of the Cyclo, and I'm keeping my fingers crossed for you! I have only injected on the tops of my legs too. Tuesdays in the right leg, Fridays in the left. I haven't had bruising, but I'll let you know that after shot #4 I had an injection site reaction. It started out the size of a quarter, and was hot, red and itchy. The strange thing is that it happened on BOTH legs. By the next morning, the areas were about the size of my palms. I got through it by putting bags of frozen peas on the areas, and using topical and oral Benedryl. After two days, the itch was gone, but the areas were still clearly marked. They turned a purple-ish color, but didn't hurt. I called Enbrel, and they had no problem with the method I was using to treat the "rash". They also said that this happens to 1 out of 3 users. They also said not to inject in the discolored areas. After each injection after the initial reaction, I am still getting site reactions, but every one is smaller in size, and the last 2 haven't itched at all. My body is adjusting. I tell you all this not to scare you, but just to forewarn you if this should happen to you. It's nothing that you can't get through, trust me! Keep me posted! I have been still taking pictures and keeping an electronic journal, but I really haven't had enough of a change in my legs to post a new pic. Someone on the psoriasis.org message boards posted that they noticed clearing starting from their head and working downward. I see that happening to me too. Hang in there Cinder - I am hoping we are both posting positive results by Christmas!!!  |
Urgrace | Tuesday, September 09, 2003 - 07:24 am     Lately I've had too much sun and not enough fluids to keep up my hydration, so my patches have gotten slightly worse. I'm so glad that some of you are seeing positive results with your medications and shots. The last dermatologist I saw said that sometimes when you medicate one portion of your body that another place heals up, especially left/right or right/left. |
Urgrace | Sunday, October 05, 2003 - 10:26 pm     bump ~ |
Ginger1218 | Monday, October 06, 2003 - 11:13 am     My sister has been getting the laser treatments and she is noticing some beginning improvements. Time will tell BUT I just wanted to pass this on. We both go to a nutritionist who is into all kinds of holistic stuff and she is also up on what foods affect certain things. She said that eating Nuts and Seeds can affect psoriasis and skin conditions. It has something to do with the way the digestive system breaks down the amino acids. She told my sister to stay away from the nuts and seeds. I will let you know. |
Halfunit | Sunday, October 12, 2003 - 06:50 am     Update- Here is a picture of the clearing of my legs. The first was taken on 8/12, the second on 10/12. My shoulders, back and torso are clear.
I am starting to get excited, lol. I hope all of you are doing well. |
Cinder | Sunday, October 12, 2003 - 08:58 am     YEA! Half. Yep- I am doing better too. I am completly off of the Cyclo and am not having any flares. Mine is a bit worse than what it was when I was taking the full dose of cyclo- but I amglad I don't have to take all those pills twice a day anymore. |
Halfunit | Sunday, October 12, 2003 - 09:17 am     <CindEr - you crack me up.. I left you a note over at the other place too. It was funny to see 1/2 over there.> |