Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 thanks - that was very informative! > Date 10-22-02 > > For the person asking about Protopic. I hope this helps. > Dee~ > =========================================== > > > Date 10-22-02 > > > PROTOPIC POLL FINAL ANALYSIS ............. > > > > This survey or poll was done with 33 participants (all females) compiled from various vaginal pain lists. It is ONLY from those who have used the Protopic ointment out of a collective total of approximately 1600 women with vaginal pain. It was collected over a time frame of two months dating from Late Aug 2002 and tallied and finalized as of Oct 22, 2002 by Dee Troll. > > > > The majority of participants are from those with vulvar Lichen Sclerosis(LS), others with vulvodynia. Some did not answer all the questions and may be why totals do not add up. This poll is not to be used or distributed to anyone other than those to whom it was originally sent as an individual, nor passed on without express permission from myself for any other use. > > > > I sincerely thank all of you who participated and took the time and hope that somehow this may help. > > Warmest regards to all, and wishing you the best of health. > > Dee Troll > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > POLL IS NOW CLOSED! > > > > PROTOPIC SURVEY: > > > > This is just a short brief survey of 21 Questions I've put together with several members asking me for a poll... so please fill it in and feel free to add comments underneath each question. I think it will be of great help for those wanting to try it, plus we can get a bigger picture of how it's working. You may send your replies through the lists or send it on anonymously directly to me. > > > > Thanks for your cooperation. > > > > Dee Troll DTroll@c... > > Your friendly Owner & Moderator of the LS list. > > Moderator of the Vulvar Disorders list. > > > > 1. BRIEFLY DESCRIBE, WHAT ARE YOUR SYMPTOMS? > > > > Words used: one person may have used many words and why the variance in numbers or not thought of all the words to use. > > > > Chronic Inflammation 7 > > Inflammation 6 > > Burning 9 > > Burning 24/7 4 > > Dryness 1 > > Sensitive skin 2 > > Soreness 3 > > Splits/ tearing/paper-cuts 10 > > Itching 11 > > Extreme/severe/ Itching 4 > > Red (ness) 2 > > Pain 5 > > Swollen 1 > > Fragile thin skin 7 > > Lesions/sores/ulcers 3 > > White patches 13 > > Red spots 3 > > Raw tissue 1 > > Severe Raw Pain 3 > > Pelvic Floor pulling 2 > > Bladder infection or IC 1 > > Fusing 11 > > Atrophy 4 > > Loss of Clitoris 3 > > Painful intercourse 8 > > Intercourse impossible 4 > > Cystitis 1 > > Discharge 1 > > Narrowed vestibule 3 > > Bleeding 1 > > Irritable Bowel 1 > > Constipation 1 > > Body & Vag. LS 1 > > > > > > > > 2. HOW LONG HAVE YOU HAD THESE SYMPTOMS? > > > > since childhood, 3 people > > 18 yrs 2 > > 15 yrs 2 > > 13 yrs 1 > > 10 yrs 2 > > 9 yrs 2 > > 8 yrs 4 > > 7 yrs 2 > > 5 yrs 3 > > 4 yrs 2 > > 3 1/2 yrs 2 > > 2 yrs 3 > > 1 yr 5 > > > > 3. WHAT 'OTHER' TREATMENTS HAVE YOU TRIED AND DID THEY BENEFIT? > > > > Some people mentioned these (their words) some had no comments one way or the other. If there are no comments after the med, they didn't say if it helped or not. just that they'd tried it. Some were used at various times over years. Also these are only women who 'also' used the Protopic certainly not everyone. > > > > Steroids: No improvement, much damage.........................4 > > Steroids; Made me worse...............................................3 > > Steroids: Helped for short term.........................................3 > > Steroids: No help..............................................................5 > > Steroids: No comment......................................................6 > > Steroid injections: worked 6 mos. but ulcers came back......1 > > Clobetasol: worked the best so far.....................................4 > > Clobetasol: worked ok.......................................................3 > > Clobetasol: (no comment) .............................................. 5 > > Clobetasol: worked initially then quit....................................1 > > Clobetasol: made me worse..............................................5 > > Dapsone (oral) no help.......................................................1 > > Diets: No help................................................................. ....2 > > Diflorasone diacetate: worked, but thinned tissue..................1 > > Oxistat: no benefit.............................................................. ..1 > > Cutavate: works ok............................................................2 > > Estrace: Major improvement.................................................5 > > Estrace: Some improvement ...............................................4 > > Estrace: Worked very well....................................................4 > > Estrace: Soothing............................................................. .....3 > > Estrace: Burned but let up....................................................3 > > Estrace: Didn't work at all......................................................4 > > Estrace: no difference........................................................... ..2 > > Estrace: not sure................................................................. ...2 > > Estrace combined with antihistamine Benedryl oral > > This really helped............................................................... ...1 > > Estriol: compound.w. Testosterone helps...............................1 > > E-string: helps................................................................ .......1 > > Estrogel: Burned on appli.2 minutes, not much > > improvement after one month...............................................1 > > Testosterone topical,works well ..........................................4 > > Testosterone: (no comment) ...............................................3 > > Testosterone: no help..........................................................3 > > Herbs: (variety) ........................................................... ........1 > > Garlic:.............................................................. ..................1 > > Acidophilus: (no help)....................................................... 4 > > Caprilic acid: (no help) .......................................................1 > > Topicort: short term worked well .......................................1 > > Elavil: Horrible side effects .............................................. 2 > > Elavil: no help, too sleepy ...................................................1 > > Despiramine.......................................................... .............1 > > Atarax: (antihistamine) helped.............................................2 > > Yogurt: ............................................................ .................1 > > Vagisil: some help...............................................................3 > > Benedryl: Made me sleepy...................................................1 > > Baking Soda baths: too drying..............................................1 > > Iodine: helped with the itch...................................................1 > > Yeast medications (vaginal) no help .....................................6 > > Yeast medications (vag). helped...........................................1 > > Diflucan no help................................................................. ...3 > > Diflucan: (oral) helped..........................................................1 > > Vitamins: ........................................................... ..................2 > > Diaper rash ointments: no help..............................................1 > > Drinking own urine: (chinese sug.).........................................1 > > Efamol: (Even.Primrose oil) ........................................... .....1 > > Peroxide some relief but drying.............................................1 > > Stopped everything, but it didn't help......................................3 > > Surgery: Skin grafting, skin looks normal but LS > > came back in a few areas within 6 months..............................1 > > > > > > > > > > 4. HAVE YOU TRIED OR DO YOU USE PROTOPIC ON YOUR VULVAR AREA? > > > > Yes: 33 > > > > > > 5. IF NO, ARE YOU TEMPTED TO TRY IT? > > (If you answer no, you can stop here) > > > > > > > > > > 6. WAS IT THE .1% OR .03% STRENGTH? > > > > .1% = 25 > > .03% = 8 > > > > > > > > 7. DID YOU HAVE 'ANY' REACTIONS OR NOT? > > > > Yes 29 > > No 4 > > > > > > 8. IF SO, WHAT WERE THEY AND HOW LONG DID THEY LAST ? > > > > All the various words and terms used: > > > > Extreme burning one day only........................3 > > Intense burning............................................ 1 > > Intense burning: through 2-3 applications........4 > > Slight burning: ............................................ 3 > > Burned quite a bit: for 3 days........................2 > > Stinging........................................................1 > > Increased Inflammation...................................2 > > Heat .............................................................2 > > Very Warm....................................................3 > > Crawling sensation .........................................1 > > Soothing After 3 days use.............................3 > > Soothing immediately......................................2 > > Slight warmth but felt good .............................3 > > Warming Sensation After 1 week.....................2 > > Warming sensation After 3 days.......................2 > > Itching............................................................ 5 > > Quite intense itching.........................................3 > > Feels fine (after 3 applications).........................2 > > Disturbed sleep................................................1 > > Toes were really hot.........................................1 > > A lot of pain with urination/inflammation..............1 > > A flare up after 3 weeks use.............................1 > > > > 9. ARE YOU STILL USING IT? > > > > Yes 29 > > No 4 > > Not at the moment with pregnancy/nursing but will get back on it. (1) > > Another stopped because of a doctor appmt. (1) > > Stopped because of bad reactions. (2) > > > > > > 10. HOW LONG HAVE YOU USED IT? > > > > 20 months--------1 > > 3 months-------- 1 > > 2 months-------- 4 > > 1 month--------- 4 > > 7 weeks--------- 2 > > 6 weeks--------- 1 > > 5 weeks----------5 > > 3 weeks--------- 5 > > 1 week--------- 4 > > 5 days and continuing...... 3 > > 2 days and quit-----------2 > > 4 days each trial----------1 > > > > > > > > 11. DID YOU TRY IT AND GIVE UP ON IT? > > > > NO 28 > > YES 2 > > Not entirely 1 > > Stopped for Dr. Appt. 1 > > Not yet, but having > > A bad reaction so far 1 > > > > > > > > (Three people returned to the Protopic after giving up earlier and wished they'd have stuck with it the first time.) > > > > > > 12. HOW OFTEN DID YOU USE IT 'INITIALLY'? > > > > (Daily & dosage strength) > > > > 2X a day (.1%) 25 > > > > 3X a day (.03%) 1 > > 2X a day (.03%) 4 > > 1X a day (.03%) 3 > > > > > > 13. HAVE YOU TAPERED DOWN USAGE? > > > > NO .................................... 23 > > YES.................................... 6 > > Stopped for Dr. appt............... 1 > > Stopped after 1 day because it was too irritating... 2 > > Stopped because of pregnancy….1 > > > > > > > > 14. IF SO, AFTER WHAT LENGTH OF TIME AND DO YOU USE IT AS A MAINTENANCE OR ONLY IF IN A FLARE UP? > > > > 1 person tapered down after initial healing to once a week and increases it if she feels a flare up coming on. > > 1 person uses it every other day for maintenance and then once a day if in a flare up. > > 1 person stopped immediately with a flare up and had been doing ok on the Clob & Estrace but wanted to try it. > > 1 person used it 3X a day then tapered down to 2X a day after a few weeks. > > 1 person used it 2X a day for six months then tapered down. > > > > > > 15. DID YOU FEEL RELIEF OR NOT FROM YOUR 'ORIGINAL' SYMPTOMS? > > > > Yes 20 > > Somewhat 6 > > No 3 > > Not yet 4 > > > > Comments: > > It's the first time she's felt normal in many years. > > Another: it's quite the change. > > Another: It was Major relief, her ulcers healed in 2 weeks and she had them for over 6 months. > > > > > > > > 16. IF YES, HOW SOON AFTER USING PROTOPIC DID YOU FEEL RELIEF OF YOUR 'ORIGINAL' SYMPTOMS? (not from the Protopic) > > > > None yet 4 > > Immediately 3 > > 2 days 4 > > 3 days 4 > > 8 days 8 > > 2 weeks 4 > > > > Comment: One person said the Clob stopped the itching but with the Protopic found that her white plaques (of LS) had diminished 30%. > > > > > > > > 17. WOULD YOU RECOMMEND IT FOR OTHER MEMBERS? > > > > Yes 23 > > Absolutely 3 > > Worth a try 1 > > Suggest a careful trial 2 > > Not sure, too soon 4 > > > > > > 18. HOW LONG HAVE YOU SUFFERED TOTALLY WITH THIS DISEASE? > > > > Since childhood....2 > > 18 years ..............2 > > 15 years...............1 > > 13 years...............1 > > 9 years.................2 > > 8 years.................1 > > 7 years.................1 > > 5 years.................4 > > 4 years.................2 > > 3 years.................4 > > 3 1/2 yrs...............1 > > 2 yrs.....................3 > > 1 1/2 yrs...............2 > > 1 year...................4 > > > > > > 19. ON A SCALE OF 1-10 WITH 10 BEING THE BEST, WHERE WOULD YOU RANK PROTOPIC'S EFFECTIVENESS? > > > > 2 people want to try it again > > 1 person ranked it a 10 + > > 5 people ranked it a 10 > > 3 people ranked it a 9 > > 6 people ranked it an 8 > > 5 people ranked it a 7 > > 3 people ranked it a 5 > > 2 people ranked it a 1 > > 3 no idea, not on it for long 0 > > > > > > > > > > > > 20. WHAT IS YOUR AGE? > > > > 60 > > 57 > > 56 > > 55 = 2 > > 54 > > 53 > > 52= 3 > > 48 > > 44= 2 > > 39 > > 38= 2 > > 36= 3 > > 34 > > 33= 2 > > 29 > > 28 > > 25 = 3 > > 23 = 2 > > > > (Some ages not given) > > > > 21. ANY OTHER COMMENTS YOU'D LIKE TO MAKE? > > > > Some chose not to make comments, these are some others. > > > > 1. Protopic gave the quickest results of any other prescription I've tried. I recently had a flare up and it does not seem to be helping that. > > > > 2. I'm hoping the Protopic does better than the Clobetasol (steroid) . This time the clob isn't working as it used to. I'm also using the Estrace cream. I still have a little burning. > > > > 3. If this were a mans condition it would be cured! > > > > 4. I am also using an estrogen cream (neo-estrone) with it and starting to unfuse I can see my minor labia returning and now visible. It's hard to say which is giving me the best results. > > > > 5. I have had better luck with Protopic than any other recommended treatments. > > > > 6. I am so thankful for the Protopic so far and that's after 34 years. > > > > 7. While using the Protopic I am still using the Estrace, which has helped the most so far and am trying to use the Protopic instead of the Clob. > > > > 8. I'm so glad for what I learned on the list and was able to talk to my doctor thank goodness he listened and it worked. Previous to that nothing worked but they were treating me for the wrong things. > > > > 9. They had me ready for surgery next, I was desperate, but the Protopic and Estrace worked. > > > > 10. I went to a dermatologist and she asked if I was using the Protopic when I told her no, she said how she loved it and gave me a whole lot of samples. > > > > 11. With the weaker 03% Protopic I am already seeing benefits, even beginning to unfuse, wow. > > > > 12. My fear is that Protopic is only temporary and symptoms will come back. I'm hoping with the combination of Estrace that it'll keep my skin healthy enough to get off of it. > > > > 13. I'm just so thankful to the person who suggested the Protopic, I just love this list. > > > > 14. Protopic has been a miracle drug for me; I've tried everything under the sun including surgery. Other treatments quit working after six months and Protopic continues to work well for me. > > > > 15. The Protopic is helping with the splits in a way that no other has been helpful and the 6 o'clock area is definitely improved and much less fragile almost what I used to remember as normal. I'm tentatively pleased and don't want to get my hopes up too high and be disappointed, but pleased I am. > > > > Miscellaneous comments: > > > > THESE ARE COMMENTS FROM OTHERS WHO SENT ME PRIVATE INFORMATION. EITHER THEY DID NOT USE THE PROTOPIC OR FILL IN THE POLL OR WANT TO USE IT BUT HAVEN'T OR HAVE USED IT AND QUIT IT. > > > > 1. I've tried the .03% Protopic twice but had extremely intense itching and had to use ice on my genitals and since I never had itching before could not see any reason to invoke such intense suffering. Begin with caution and make sure you don't have to be anywhere. > > > > 2. I'm really tempted to try the Protopic having soreness, itching and splits around the vaginal lips as well as anus. Dermovate has helped up till now but I need to use it daily. > > > > 3. I have LS on my genitals and breast area and intend on trying the Elidel shortly on my vulvar area. If the Elidel works I'll consider the Protopic. > > > > 4. I have blood blisters in the clitoral area and its swollen and buried, tissue has white patches, chronic yeast discharge but no itch. Biopsy confirmed for LS, June of 2002. I'm currently in remission with using Clobetasol, A & D ointment and vitamins, Fish oil, Flax oil, Vit E, garlic acidophilus and seems to have helped and will try the Protopic if I have to. I just started Estrace so I don't know how that will work. My yeast free diet has kept me pretty well yeast free. When in a bad flare up I use Atarax (antihistamine) and within 20-30 min. I have relief and by the next day it is GONE. I never go without one in my purse. > > > > 5. Clob controls most of my inflammation but not the pains with intercourse I still have intense pain and bleeding. I've just begun Premarin cream. and I do want to give the Protopic a try. Things that didn't work were Zinc ointment, A & D, and lots of antibiotics no benefits. > > > > 6. I've tried Clob, testosterone, Premarin, estradiol cream and they did help stop my inflammation but I'm hoping for more physical improvement with thicker tissue and painless intercourse, Healing seems very slow. Hoping my new Estradiol cream will help and may try the Protopic later. One thing at a time. > > > > 7. I've had LS for about 16-18 years with many of the symptoms rash, itch, pain bleeding, sometimes fever. I used the T cream and it worked well, I also used the Diprolene AF and it worked but not that well. When I take an antihistamine I never have a flare up. Since I have Herpes I'm not keen on trying the Protopic. > > > > 8. I have an appt. next week and am anxious to try the Protopic. > > > > 9. I've had itching, burning, white patches and pain with intercourse for 35-40 years (started as a child) I've used Testosterone (some benefit) Temovate, (controls the itch but thins the skin and burns). Benadryl (no noticeable benefit) and had a vestibulectomy, the tissue at the 6:o'clock position was removed but the skin that was grafted on the vulva now has LS. I'm afraid to try the Protopic because I've had shingles. > > > > 10. I've tried the low oxalate diet, oxasorb, NAG, eliminated wheat, dairy corn and oral antifungals and they did not help. > > > > > > END..... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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