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Now been prescribed prednisolone steroid tablets - anyone have experience with these?

Posted , 8 users are following.

andrew2527
andrew2527

Hi folks, update:

Saw dermatologist today and she admitted it is spreading badly over my body, sides, back,chest, tops of arms, groin... Initially she suggested light therapy, 3 times a week about 30 to 40 sessions! This isn't viable at the moment do to work commitments etc... So now I've been prescribed prednisolone steroid tablets, 30mg a day for 4 weeks. Reading the side effects is scary stuff! But I'm already suffering from stress, depression and anxiety so what have I to lose!! Has anyone else been prescribed this medication for LS?

Thanks again for the support and my next step tomorrow is to organise some counselling for the depression that this condition is causing.

I sympathise with everyone one here, this is a dreadful thing to have to live with.

0 likes, 7 replies

7 Replies

  • jenny99721
    jenny99721 andrew2527

    Posted

    Hi Andrew - Firstly I would like to say how sorry I feel that you are having such a tough time with this nasty skin disease. I do remember when I was first diagnosed that there may come a time when oral steroids may be necessary. This has not happened as yet but I can say that I have been treated twice over the years with this medication (for a chest infection both times). If I remember correctly it may have been the same dose but for 5 days only. What I do remember specifically was that pills gave me a sense of well being and I was well again very quickly). I have no idea what a longer course would be like and I hope someone out there can help. I wish you the best with the treatment and also with any support you receive for your depression which seems like a reasonable response to where you are at the moment. Take care Jen
  • eyebtwinkle
    eyebtwinkle andrew2527

    Posted

    I have the same type you do on various parts of my body. I have taking prednisone two or three times for a week for various other things and it has had no effect on my rashes. Who knows what a four week long dosage may do. I have learned to control the inch almost 100% (wuich was horrible) by altering many things in my life. Any friction whatsoever will cause me to start breaking out in that area. Hot water either in the shower or bath will cause me to break out. Any trauma to my skin or friction. Elastic in my clothes break me out. I stand next to the shower stream instead of under it and shower that way because of water irritates my skin and start a new set of rashes. A shower in barely warmer than lukewarm water only. I moisturize with coconut oil before I dry off. I wash my hair in the kitchen sink only. One of the worst things I can do is to wash my hair while I'm in the shower. I will start an itch scratch cycle for days if I do that. It's not the shampoo but the heat from the water and the friction from it touching my skin. I have found the best thing I can do is to stay moisturized 24 hours a day. I do use the various creams from the dermatologist off and on to no avail on the extragenital rashes. I also was offered light treatments but I do not live close to my doctor and I drive a Ford F 250 so it isn't feasible gas wise. Also I read the results aren't that great with the light treatments and it can come back or just lessen the symptoms.. Its a huge investment of time and money for just a small chance that it's going to make it go away. I have tried various diets. I was gluten free for a year and continued to get worse. When I say I was gluten free I mean we didn't eat out and we replaced everything in the kitchen. I also did the low oxalate diet. My thyroid is normal. I have vitamin deficiencies and I'm taking care of that. About 12 years ago I had hair loss and had to have steroid shots in my scalp. Looking back I'm pretty sure that was part of the lichen sclerosus.. who knows. I am currently doing a nightshade free diet for 2 weeks. I eat a lot of tomatoes because we eat salad every day so I will leave those off and see what happens. I have heard it has been a miracle cure for people with this and night shades are mostly gross foods like eggplant anyway lol. I have learned to take the time and take care if it as best i can but i no longer let it define me. Hope some of this helps. take care!
    • lynne1945
      lynne1945 eyebtwinkle

      Posted

      Eliminating night shades for me has had a most beneficial effect for the LP in mouth! I read about it in passing somewhere and eliminated all potato, tomatoes, peppers, eggplants and peanuts are the same family. They are the worst for me.

      The worst reactions of mouth blisters I had is with curry no matter how mild. Huge blisters, lesions, lumps like peas under the skin along inside of lower mouth. Skin wherever I have had a cut or an insect bite or an old scar burns like fire. Marks from sitting on the loo look like I have been sliced by a knife but are just the edge of the toilet seat. Burning lips and horrid metallic taste. As well as the prednisone I am on orally I also take steroid mouth washes Betnosol 0.5  mgms. Try kumera or sweet potatoes instead of potatoes. If I only eat at home I am fine, diet is limited, but you get used to it and it's great when you get relief. My symptoms last two days and are nasty after nightshades

       your problem sounds very bad eyebtwinkle and I am sorry for your discomfort. 

      I have gone overboard with the diet thing trying to find the magic baddie. Not only the nightshades but the sugar gluten, dairy, coffee, alcohol, every morsel of food was clean, no packets or ready made jars.home grown vega or organic. Most fruit eliminated. Did the FODMAPS diet as well due to IBS. Ended up with eggs, gluten and dairy free bread and bread products, some vegetables, banana and blueberry smoothies with supplements, salmon, fish and meats, avocado by the hundreds, peppermint tea, nuts and seeds. Lost three stone in seven months. No wonder! My scalp is less itchy lately, it was driving me mad and spots on my hands and feet  felt like mosquito larvae were hatching there and eating there way out! 

      Its so hard to get the right thing ...

  • Morrell1951
    Morrell1951 andrew2527

    Posted

    I'm not surprised you've been prescribed prednisone. Yes, it has those side effects, but they're temporary. It will probably work like magic to calm things down and break the cycle of the stress caused by the condition making the condition worse. My mother was on it for 40 years for rheumatoid arthritis. It kept her moving. Be sure you follow the easing-off directions. The worst thing you can do is stop prednisone cold turkey. Couselling sounds like a fine idea. I'm a big fan of it. Keep us posted, Andrew.
  • lynne1945
    lynne1945 andrew2527

    Posted

    Sorry you are having to cope with this Andrew. 

    From experience re the Prednisone,

    I am on a course of it now. I have Lichen Planus, a close cousin to LS and in the usual ladies region and now involving mouth, scalp and skin. The usual steroid cream did not work for me so I am prescribed a much less potent cream and while we wait to see how it settles down (my dermatologist and I) she prescribed me Prednisone.  Commenced with 40 mgms. I won't go into the side effects, you know them, and many things influence them. For one thing, I am much older than you and have other medical conditions. So it's relative. But you won't be stopping them cold after four weeks, I can guarantee that!

    30 mgms is a very large dose and you will feel no pain and be comfortable on them. But Prednisone must be tapered very gradually from the body or the side effects from the stopping cold will be more dire than the drug itself.

     Talk to your doctor, who you maybe misunderstood?

    I started Prednisone in late November and my tapering has taken to the present time to 4 mgms daily, and I have another two months to taper down to nothing. 

    Yes, I too have depression and ongoing counselling, which is helpful. It's been over a year for me, though initially diagnosed with LS I was finally given LP as a final diagnosis in November.  Same difference. It still sucks. 

    It's a long road Andrew, and we all know it on this forum.  Glad you're going the counselling route. Stress exacerbates everything.

    How  are you doing with your cutting out sugar? Did you try any other dietary restrictions or eliminations? Nil sugar helped me I really believe.

    Good luck with it all.

  • Guppy007
    Guppy007 andrew2527

    Posted

    I am sorry to hear that Andrew.  It does sound as though you probably need to 'bring out the big guns'  which should knock it back.  I do hope you are continuing to cut out the sugar, as that is important, and so hopefully you may be in a better place with this disease in a months time, and the counselling should help too. 
  • Jessicat
    Jessicat andrew2527

    Posted

    So sorry to hear about that, I too have been having counselling due to severe anxiety and slight depression that was triggered by this condition. It's a good idea to try and sort that out and in turn reducing stress may help your condition slightly. 
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