Lichen Planus

[Jennyhadenough]

My Dr used this word today and prescribed medications.

So far twice my pharmacy wouldn’t refill a prescription for me without Dr authorization.

She said it contradicted to my liver disease.

My alp was 59 two weeks ago. Ast and alt was 12 and 15.

Next year if all stays well, he will stop my AZA.

I got both vaccines.

But since the end of Feb UTI symptoms with negative culture.

However a procedure caused a UTI

Now my Dr told me to research lichen Planus

Anyone else having trouble getting prescriptions filled and new autoimmune diseases and autoimmune related diseases.

My liver is still stage 0. I’m so thankful but my CAP score was 340, but the elasticity was 3.0 on fiberscan. Dr said not to worry about CAP because it may take two years for the true result. My ct scan, MRI and altrasound and hydroscan all show a healthy liver. Just some cyst and something else birth related.

[Hidden]

Hi Jenny I have Lichen sclerosus which is treated with extra strong steroid cream, not sure if they are similar .

Your numbers sound great with is pointing in a positive direction . I know it’s hard but we are immune compromised which makes us so much more likely to have other things and yes, it can get us down. I have my days when I get so fed up that I have a cry and get fed up with seeing different consultants for all my ailments but I have had to learn to accept it. My husband keeps saying that surely I can’t get any more bad luck health wise but in other things I am very lucky and that’s what I hold on to. I feel from your posts that you are struggling, which is understandable, stay strong x

[Jennyhadenough in reply to Hidden]

Thank you for your response. It’s kind of odd. 4 years ago with in days of my liver enzyme elevated on, I had a procedure that was not painful at all. Just uncomfortable. But a bladder full of polyps was found. This time the procedure was horrid. I’m thinking all the prednisone that I took for 4 years got rid of them. I have bad days mainly because I married a couch potato and he makes it uncomfortable for me to leave the house or have friends. A job was out of the question. I finally put my foot down.

I’m back in school and will be finished with my second on line semester in a week.

Covid19 isn’t helping.

I’m planning on standing my ground and going to an RV park for a few weeks. (Just me and my dog).

I have an apt with a dr this week that specializes with women and menopause and urologist issues. I know that I have an angiolipoma in my kidney but it’s tiny and hasn’t grown.

I don’t stay down and feeling defeated for to long. It passes quickly.

I really miss having friends and ladies night out. Sadly I’m married to someone that can’t handle it. Just as quickly as I make a friend they go away.

That’s the hardest part of my life.

[Nellies47 in reply to Jennyhadenough]

Hi.Sorry your having such a hard time. I can identify with most of what your going through. I have hypothyroidism pbc, ? Sjorgrens and now probably autoimmune bladder, going for cystoscopyin the coming weeks. I try to remain upbeat but sometimes the effort to keep all going is just too much.

I also have a difficult relationship with my husband and all my sickness has just made him worse. But thankfully he doesn't mind me having friends, I go running with 2 girls. This helps a lot.

I think you would be right to have a little holiday with the dogs, it sounds ideal. I can't waith to be able to move out of our 20k. Remember your are important and look out for you. Do what you can to build your self esteem. Maybe some counselling to start with, I have a lovely therapist. God bless❤

[RMFrum in reply to Jennyhadenough]

I too have LP, diagnosed after years of being treated for UTI’s and yeast infections that I didn’t have. I use Clobetasol cream but it’s not doing the trick going to have to add or use something else, it’s maddening. Alk Phos was 186 last time after being at 150 for a while 😔 AST low at 11, ALT normal at 25..

[Jennyhadenough in reply to RMFrum]

I thought it was interstitial cystitis an ER dr used that word with me. I don’t get yeast but, yes to the uti feelings. This is actually the first time that the culture came back positive. I thought I had yeast because of the strong antibiotics that was prescribed for me.

I have my gyn and then a Urogynecologist.

I have an apt this week with the Urogynecologist. I have too many Doctors to keep up with. But I will ask the Urogynecologist why my regular gyn used the word, lichen planus.

She told me that she saw scarring, and I already have autoimmune disease.

I appreciate your time. It really helps me talk to my docs and health insurance nurse to put things in perspective to talk to my doctors

Thank you

Jenny

[Biddyb]

Don’t understand why the pharmacist would go against the doctors prescription! Surely they should just dispense what’s been prescribed. Sounds like you have more than your share without the added problem. I have Lichen sclerosis and like RFMrum use the same cream to keep it under control. I know you’ve posted over the years about your problems, don’t give up battle on. Hard when your other half isn’t on your side. Although mine doesn’t understand it he is really good. Battle on enjoy your break with the dogs they will never let you down

[Jennyhadenough in reply to Biddyb]

I am working so hard on trying to keep a normal life. I hope that whatever scarring my new gyn saw isn’t anything new. I will be done with my second semester at our local college. I am taking on line classes. I got my second vaccine on March 31.

I read that Azathioprine will cancel out the vaccine. I am really looking forward to face to face learning.

The Emergency room dr thought IC because I have autoimmune already. My gynecologist said she saw scarring.

I’m hoping that the Urogynecologist can give me answers.

I am so ready to get out of the house and live. Even if I have to wear a mask

Thank you for responding but May I ask what specialty your dr has that diagnosed you and if you can think of anything that I should ask my dr or test that I should ask for

I would greatly appreciate it.

I really do feel fine other than the bladder area pain. I really hope that you are doing well

Thank you

Jenny

[Biddyb in reply to Jennyhadenough]

Well done you for wanting to get on and learn new things also getting out in general. I was diagnosed in 2010 after I had bloods done for aches and suspected arthritis and it showed I had the AMA positive to denote PBC I then was under a GI in hospital who after a while put me on steroids suspecting I had AIH overlap then Aza to immuno suppress more which I was extremely ill on, we came to a decision to leave it there as I didn’t agree with the treatment and asked my GP to refer me to a Hepatologist at a different hospital and they took me gradually off steroids after scans, biopsy and blood tests I am just on Urso and having have bloods checked regularly via my GP due to the pandemic I haven’t seen my consultant but only LFT raised is my ALT which has always been so. Do you log into PBC foundation every Thursday 2pm UK time on Facebook they allow you to post questions and it’s really worth watching. Good luck

[Jennyhadenough in reply to Biddyb]

I’m sorry, I was asking how you were diagnosed with lichen sclerosis, and what type of doctor you used for that diagnosis. I don’t think that I can deal with another diagnosis. I was unable to get pyridium and another cream filled right away. I had to wait for pharmacy to contact my prescribing doctor for a second approval. I don’t know why they do that. Seems like if the dr prescribes it fill it.

[Biddyb in reply to Jennyhadenough]

Oops miss understood I managed to see our lady GP and told her the symptoms she guessed straight away what it was and gave me the cream which works perfectly then I say a gynaecologist she the GP sent me to just to confirm that she had the diagnosis correct. Apparently I will always have it and I stop with the cream when it eases but have to resume when it flares again. Good luck

[Jennyhadenough in reply to Biddyb]

I don’t understand the scarring that she is talking about. I read on google about a biopsy. I will ask about that to the Urogynecologist. I only went to my gyn because of the strong antibiotic, and feeling a little uncomfortable. Women go through so much. Thank god that we have each other to talk about it. I would be lost. I have no females in my my life.

[Biddyb in reply to Jennyhadenough]

This site is so helpful it’s nice to know in a strange way that you’re not the only one with the different problems that pop up. Do try the foundation on Thursdays it’s really informative if you are on Facebook you can always catch up and watch later there is an alternative way of watching but I’m not sure how to do that, maybe even send an email to them they are really helpful I’m guessing you are overseas so it may be difficult to call but coverage is worldwide. Let us know how you are getting on.

[Jennyhadenough in reply to Biddyb]

Specialist said that she doesn’t see any lichen planus or sclerosis. I have an incompetent cervix and during my pregnancies, I needed to have a cerclage. That’s stitching my cervix. That was the scar that was seen. She said that she doesn’t see a reason to biopsy but I should bring it up to my dermatologist. She said for me to stop using baby wipes, but to use water wipes. I go in our RV often so baby wipes is my go to.

This is a relief for me.

We did talk about my oab and meds and some kind of chair. I will have to research this. It is a very expensive chair that is a twice a week thing for a few months. Very expensive.

[Biddyb in reply to Jennyhadenough]

Guess it’s sort of good news in a round about way but still leaves you in a bit of a quandary it’s hard to know what’s happening when you can’t get a definite diagnosis. Battle on and keep fighting