I have just been told by my dermatologist that the won't go away yeast infection my doctor told me I had was actually lichen sclerosis. After the initial shock and a good bit of anger at my primary care doc, I did a bit of reading and now I'm wondering if prednisone played a part in this.A month or so ago, wearing a holter monitor for two weeks uncovered paroxsymal ventricular tachycardia and I then saw a cardiologist who seems to think that prednisone caused that.
I just stopped taking prednisone for the second time after a flare of PMR symptoms. So I took it for a total of over three years.
I fully understand why doctors want us off it as soon as possible and I would hesitate to take it again but is there an alternative?
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Logic
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If you live in the USA there is the possibility of Actemra which is actually officially only approved for RA and GCA but some manage to get it approved and funded by their insurance or by Genentech under some special arrangement. For most though, pred and only pred - or at least, only corticosteroids.
However - once you have one autoimmune condition, you are at a greater risk of developing another or even, if you are really unlucky, multiple others. You had PMR - lichen sclerosus came along too.
I have an arrhythmia, paroxysmal atrial fibrillation. Many GPs and even some specialists might blame the pred. However - mine is due to damage caused by the autoimmune part of PMR/GCA having affected the electrical cells in the heart which govern heart rate and is definitely not due to pred. It had started 5 years before I took any pred, about the same time as the first PMR symptoms appeared. My cardiologist, a specialist in arrhythmias is quite satisfied it is the PMR, not the pred, That is further backed up by it being worse when I have a flare and a higher dose of pred calming it down - definitely associated with the vasculitis.
LS is usually treated with topical steroids and I can't find any drugs linked to its development - don't confuse it with lichen planus which may be linked to the use of certain drugs.
Hi Logic, I have have had lichen sclerosis for about 15 years which every so often involves me using a topical steroid cream or ointment which works very well. The last 2.5+ years I have been on Prednisilone starting at 60mg and it has not affected my LS at all so I would be surprised if it actually caused it. My urine is checked each time I go to Rheumatology and always contains blood but it has been decided that the urethra is inflamed due to LS and the blood is coming from there (its not visible). A cystoscopy was quite painful due to this. Im only telling you just in case you too end of with blood being detected in your urine and start to worry. LS is a nuisance and uncomfortable but can be very well controlled. All the very best.
Hello- I was (eventually) diagnosed with LS some years before PMR, so not caused by Pred just an out-of-kilter immune system. It seems to be more or less controlled by Dermovat- a very potent steroid ointment but is uncomfortable when it flares. I also have blood in my urine and have UTIs fairly frequently. No idea what causes what!
I have LS and suspect l had it before my GCA diagnosis. It is well controlled by Dermovate just an amount the size of a pea. I was also advised not to wear tight clothes and only cotton next to the skin and to not be to vigorous when using loo paper but just to pat myself gently dry. I had a yeast issue and an L S flare earlier in the year, so it's worth keeping an eye on that problem as well.
I also had Lichen Sclerosis which took a long time to diagnose so it had become quite severe and upsetting. It was treated with cortisone cream which is pretty effective. However since I have been taking predisolone for PMG the Lichen Sclerosis has gone away. When checked last at the hospital they could see no trace. I understand that LS can go away occasionally on its own but although I hate predisolone and all its many side effects is it possible that these autoimmune problems also respond to oral steroids. My inflammatory bowel disease, a hangover from radio therapy has also reduced hugely. Our bodies are a mystery. I do hope you feel better very soon.
I too have LS diagnosed about 10 years before PMR. It took a consultant gynaecologist to pin it down after several registrars tried a variety of things including testosterone patches! I got it under control with dermovate but it took about a year. Now I very rarely need to use it. But the best advice was never to have a bath (or go swimming), just showers, only one a week, and only use Dermol to wash down below, never shower gel or soap. Then use Double base gel, applied as a finger tip amount afterwards. GPs don't like you using Dermovate as it thins the skin, so they are reluctant to prescribe it too often.I don't think it was related to my PMR as it was largely cleared up by the time I got that, though I still keep up the washing regime above. If I go on holiday I can't take the Dermol or DB gel as the bottles are too big. I do notice a bit of soreness as a result.
I suspect that large bottles of a medical requirement would be allowed - and you can dispense it into a smaller bottle if the bottle is simply inconveniently large.
Yes it's more to do with the size of the bottles taking up space in the luggage as we don't go abroad. I tried dispensing the DB gel but its thick consistency makes it difficult to get from a small bottle. I ended up with it in a small tub (eg old hand cream jar) instead, which worked quite well, but it doesn't keep very well in this (don't know why) so you don't need to do too much or you have to throw it away.
Would it be possible to decant some of your Dermol or DB into smaller bottles so that you can take it/them with you when you go on holiday? My wife does that with colloidal silver which she uses for various skin and gum conditions.
my non-pmr friend has lichen sclerosis; she is receiving hyperbaric chamber treatments which have cleared it up. She was amazed. I’m not suggesting it for you, just chiming in with her story.
It's interesting that so many people responded to your LS post. I started with LS at exactly the same time as I was having the PMR symptoms. An immune system gone awry for sure... The best thing you can do is get an appointment at a vulvar clinic. They know what to do. The prescribed clobestasol cream worked for me but you have to keep on top of it as it can re-occur. I also joined a Canadian facebook support group which was very helpful.
have a look at this link (hope it loads for you) . i have not tried this but think once finished with my tapering if i had a sudden onset i might try it.
I was diagnosed by biopsy for LS after menopause started in earnest at about age 51 or 52. I'm now 71. Initially it was devastating as sex was so painful. My husband is so patient.
I joined an Lichen Sclerosis group on Yahoo. It's private because they don't want trolls. I got excellent information on topical clobetasol the most high potency steroid that is used sparingly. The Site administer warned against over using as she did and wound up with Cushings. Topical is the only thing that works. And not daily. They also advised topical compounded testosterone twice a week.
There was experimental drugs that some people were trying. The poor people in Canada had trouble as in Canada they called it Scleroderma, which is quite different. In 4% of cases it can turn to squamous cell carcinoma. I stopped the testosterone when I got Patchy Alopecia areata. That comes and goes and so does the LS.
I've got a derm appointment, yes, dermatology, in April 2023 as I've had a flair and have not treated it other than petroleum jelly to stop the burning. This doctor in Manhattan had LS research all over her bio, but I had to convince the secretary to give me an appointment even though my internist put in a referral.
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