Going on & off clob? - also - Is sitting a problem for you?
Posted , 4 users are following.
I've been doing well (or so I thought) going off clob a week ago, using the olive oil technique, but after stupidly wearing a pair of yoga pants today and now I'm back to having that familiar aching/pounding sensation in my clitoral area and that makes sitting kind of miserable.
Now I wonder if its ok to go on clob depending on the pain situation?
I try to sit wearing big baggy pants, on a soft pillow and scootch way back on my hind end when I'm home watching tv but at a movie theater that isn't so easy.
Any advice?
Thank you!!
0 likes, 18 replies
jane08222 ro77360
Posted
yes, back on clob for a bit.maybe add ice packs for a
few days, you will be fine! we all make mistakes!!!!!
ro77360 jane08222
Posted
Thanks for the advice and the kind words.
I always beat myself up when I make a dumb mistake. I thought I could get back with one afternoon in those tight pants - ugh!
beverly52803 ro77360
Posted
Ro, are you able to actually see any signs of it?
I've just ended my first week using the clobetasol twice a day and starting the once a day regimen. It occurred to me I'm not sure how long I'm supposed to continue the daily usage. Directions on the tube just say twice daily for one week, than once daily.
I had been using triamcinilone since last June twice a week for 6 or so months, then it became daily, then twice daily till I saw the doc April 24th and was prescribed the clob to my dismay. I've never had more than a buzzing sensation. I didn't even have that when I was first diagnosed which is why I consider mine the stealth version.
This has been very discouraging as last fall the doc saw only a tiny bit of LS left on edge of one labia.
She is leaving the medical group (may be gone now)and hopes to open her own practice by August. I didn't think to ask if she would be available for questions. I assumed the stronger clob would whack it down and am paranoid it will not.
Guess I'll play it by ear as you have. If I ease off using it daily and the sensations return I'll go back to daily.
ro77360
Posted
Hmmm...my PA told me to take the clob 2 x a day for 3 weeks but I can't recall what to do after that. I just went on the olive oil regime.
I feel a bit less, clitorially speaking, aching today. As I said no more undies and tight pants for me as something is still going on in there I can see that now.
I'm back to the olive oil and beeswax treatment on my vulva.
I was going to pull out the magnification mirror today and sit on the floor in the sunlight but I forgot.
Will do so tomorrow but, frankly, I never do see very much down there.
My PA said I have it on the inner left labia, too, but also a bit over the top of the clitoris. My husband does my checking and he says it looks much improved. I dunno. I will have to check myself, as I said.
Clob is supposed to be the most powerful steroid for LS, at least on the vulva.
Do you follow the low oxylate diet? I'm just starting that this week.
No spinach, which I love.
rubydee ro77360
Posted
Typically they prescribe a gradual reduction in the use of clob...an example...2x/day for 3 weeks, 1x/day for a week and then on to maintenance. I think I read that you aren't supposed to suddenly stop.
Not all doctors/PA's are familiar with all of the faces of LS. Mine was diagnosed by a gynecologist. She recognized it immediately but recommended a biopsy, which I did. I was lucky to have a doctor who recognized it immediately...many women go undiagnosed for years even with typical symptoms and being seen by various doctors. But after diagnosis she had very little instruction for me....what she told me was very general and not specific to my case. Basically...apply as directed and come back in 6 months. After that I knew I had to see someone who had more experience treating LS patients.
I saw my specialist about a month or so after starting clob to find that there was an additional area that needed treating...I had no clue. She also wanted me back in a month, then 4 months and then on to the every 6 month maintenance visits.
If possible, I would recommend you see someone who has some experience treating LS.
beverly52803 ro77360
Posted
ro, I wouldn't stop the steroid cold turkey. I do think easing off is what is typically recommended.
Re diet I have been trying my damndest to avoid gluten, but that has always been impossible whenever I've tried so I would say I'm eating very little of it. Also practically no sugar at all other than in dark chocolate. Am taking a lot of supplements. None of these things have had any effect as clearly the LS progressed over the winter while I was away. Prior to that it was nearly gone.
Have not been avoiding spinach. Someone else mentioned a low oxylate diet, but I think she had other issues. It's part of my diet but I don't eat huge amounts of it often in salad. However, I just checked the list and I eat nearly everything considered highest in oxylates! This is why I am trying to get an appointment with a functional medicine dr. Have not gotten a return phone call which is not encouraging. Had the same problem in FL. But when someone finally called back the price was astronomical so I didn't go.
beverly52803 ro77360
Posted
ro, once again my response to you has been blocked. It happens every other time I post something. Nothing mentioned in it that someone else hasn't mentioned before.
ro77360 beverly52803
Posted
Try it again. I think I might have checked off the wrong box when I signed up.
ro77360 rubydee
Posted
Thanks for the advice. I wasn't aware there were LS specialists but it makes sense!
beverly52803 ro77360
Posted
ro, they are either gynecologists or dermatologists. I have been seeing a gyn who specializes in vulval skin problems. But she is the one who is leaving the group and is trying to open her own practice in August.
beverly52803 ro77360
Posted
The message is gone now. I didn't make a copy.
ro77360 beverly52803
Posted
Beverly, I'm terrible with the grains, too.
Crackers, whole wheat bread, cream of wheat cereal, etc.
Did any symptoms increase over the winter?
Redness
Itching (pruritus), which can be severe
Discomfort or pain
Smooth white patches on your skin
Blotchy, wrinkled patches
Tearing or bleeding
In severe cases, bleeding, blistering or ulcerated sores
Painful sex
(Mayo Clinic)
(You don't have the itching, right? ) Me neither.
What is a functional medicine dr.?
beverly52803 ro77360
Posted
Here we go again with having messages blocked. Did NOT mention one thing other than a med name which I have mentioned MANY times before. What is going on here, Alan?
beverly52803 ro77360
Posted
Moderator: the little envelopes are missing. If messages are continually being "held back" how are we supposed to send a private message now? In this thread only jane has one next to her name.
Emis_Moderator beverly52803
Posted
Hi Beverly,
I see envelopes/Message link under every username in this thread so not sure why you are not, see image below. They only appear on the initial name on a post, ie the user who posted the comment, and you will not see them on your own username.
Alternatively if you click on a username you will be taken to the user's profile page where there is a Message button you can use to send a PM.
Regards,
Alan
rubydee beverly52803
Posted
beverly...you do have to be signed in to see the message envelope...maybe that is the difference?
beverly52803 Emis_Moderator
Posted
That's strange. They were not on my page. But then technology may as well be from another planet as far as I'm concerned. I am always stymied.
beverly52803 rubydee
Posted
I don't think I can see any message unless I'm signed in. They go into my junk folder but I "unblock" them in order to access the full message. Have never not seen the envelope before. Maybe one more internet mystery.