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Prednisolone

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janet14274
janet14274

I was on prednisolone from April 2014 (PMR) starting 20 mg a day, and last Christmas the rheumatologist told me to drop the dose to 5 mg every other day. The itching started very soon after initially on my back, followed by lumps and rashes. It is now from my scalp to my ankles. Only my face, palms and feet have been unaffected. I have had tests and am due the follow up with the dermatologist in a weeks time. I believe it is LP and that it was sparked by a too-abrupt reduction in the steroid. I am still on the steroid, was put back to 5, then 4 six weeks ago, 3 today for next six weeks. The PMR is nearly gone but the skin problem is getting worse, I am close to despair.

1 like, 11 replies

11 Replies

  • julia96551
    julia96551 janet14274

    Posted

    You should always be tapered off of prednisone to avoid an adrenal crash and the autoimmune/allergic/joint/etc.  problems (for which you took the pred initially) coming back with a vengeance.  Your doctor should know that (I hope).

    For example, if you were on 20 mg for some time (not just a 1 week blast) you should take 15mg for at least a week, then 10mg for the next week, etc.

    When I got below 20mg of pred (even with Plaquinel) the ulcers/erosions in my mouth always came back.  Above 20 mg, the OLP resolved and it was wonderful while it lasted.

    However, even though I tapered off slowly the last time, not only did my OLP come back with a vengeance, but also the rash on my head, and my toenails which had grown out almost 80% started detaching again.  I also got a LP rash on my shins.

    Afer 2 months on a coal tar shampoo, the head rash has stopped (only coal tar worked, not any other type of shampoo), and I used steroid cream on and off on my shins (1 week on unltil cleared, then a week or two off til it came back, then same again).  The toenails continue to detach however, and the mouth is very bad unless I use dexamethasone mouthwash, but it only helps the ulcers from being unbearable -- it does not clear them or the rough check and gum patches.

    When I took prednisone for asthma problems in the past, it would clear that up eventually (for months or even years) until I had a really bad virus agian.

    The LP, especially OLP, seems to be intractable so far after 3 years.  Had the skin form for at least 5 years before that, but thought it was psoriasis, although my nails have always been deeply ridged, pitted and red around the moons.

    When I went on pred for LP (specifically OLP 2x, but it also cured the cutaneous LP), I was on 60mg for a few months, then tapered off 5mg per week until I was off entirely, which took about 6 weeks to 3 months.  My OLP symptoms

    • rajkiwi
      rajkiwi julia96551

      Posted

      Hi Julia,

      I have had OLP or what some doctors are referring to as mucosal LP as it is affecting mostly the mucosa memberane inside the mouth. I have similar experience with the Pred dose of 20mg and above. This time the doc has put me on Azhathioprine 50mg. Its been 2 weeks plus and the OLP is slowly looking more manageble. 3 weeks back it was a mess with bacterial and fungal infections as well. Lips still need a healing touch though.

    • julia96551
      julia96551 rajkiwi

      Posted

      Thank you for you update on the azithioprine.  My liver number were up from the first bout of prednisone, so my doc wanted to use the azithioprine, but was worried because of the liver numbers.  Now my liver numbers are good, so after I get finished with my eyes (steroid induced cataracts) I would like to try it.

      Please report back to everyone when you go off the azithioprine to see if the OLP goes into remission.  That would be great hope to us all.

    • rajkiwi
      rajkiwi julia96551

      Posted

      I shall let the group know how Azihtioprine works out for me. My mouth is feeling a lot better and am on 4 mg of methy pred for support till Azithioprine kicks in. though steroid works well for me, I just cant go back on it just yet as my steroid induced diabetes is just weaning off. For those who have steroid induced complications, docs also prescribe twice weekly steroid doses. This apparently is safer. Dexamethasone is a loger lasting steroid while pred lasts only for a day in the body (So said my current doctor).

      Am also using cotton cloth dipped in saline and giving compress to the inside of my cheeks. This the doc says may help with the slough coming off faster and the mucosa developing. I do the same on my lips. My doctor checks in 3 days to see if it is working.

  • rajkiwi
    rajkiwi janet14274

    Posted

    Hi Janet, 

    I think Julia talks of how one has to carefully taper steroids. Sadly many docs may lack empathy and not be serious enough in managing our condition. One has to be lucky to get a good doc. You were on steroids 20mg for a very very long time. I think the least I would have asked the doctor to give me an effective tapering regime. 

    20mg for 6 months + and the tapering at 5mg every other day is ridiculous. In my layman understanding I refer this as setting up a patient to fail. I have noticed this behaviour in some doctors. They give you an ineffective dose and then reach a conclusion based on that. This then helps them to progress you to the next level (of exprerimetation).

     

  • janet14274
    janet14274

    Posted

    I had tapered to the 5 mg from 20 last year under the guidance of the rheumatologist. I am in the UK and for the PMR saw a specialist in a hospital day clinic not my GP. It was after the last taper this time last year that the skin flared up and I have in my mind that it triggered it. Obviously I won't know if it is LP until I see the dermatologist next week but the skin problem ticks all the boxes for LP. I know about the slow taper now but didn't at time, I did as I was told. I am now on a six week schedule and yesterday I came down from 4 mg to 3. I showered before bed, used dermovate on the "hot spots" zerobase everywhere else and woke up at 3 am with my whole body and scalp feeling on fire. I used the emollient again, and apple cider vinegar on my scalp. It took about an hour before I could sleep again. I had my gall bladder out 2 weeks ago, one incision is infected. I am diabetic and hypothyroid. I am 68 years old and feel so tired all the time, I hate having to take so many pills. Thank you all for your consideration. Btw I have a recurring rough spot in my mouth which gets quite sore and I now assume is linked. This thing comes in waves intense/just bearable/intense again, never before in my life have I experienced skin problems. I am trying to find a cause. I will look at coal tar shampoo is that T gel? I already us that 3 times a week.
    • julia96551
      julia96551 janet14274

      Posted

      Janet,

      I had the skin form (horrible itchy, burning head rash) of LP since 2009.  Thought it was psoriasis, since my toenails were also detaching, then I got OLP in 2013 and the doctor connected all 3.

      The head rash went away finally when I first went on oral steroids.  The only other time it went away was when I had a bee sting, had an allergic reaction to that and the hospital discharged me with a 3 week supply of pred.  After I finished that, the rash went away for 6 weeks.  When I stopped the oral steroids, it came back.

      This is what has not worked or worked for me (when not on the pred):  Nizoral (ketonozole 2%) shampoo and non-itch zinc scalp serum and ketonozole 2% cream did nothing for me (neither did any other zinc, salicylic acid or selenium sulfide shampoo).

      After the entire back of my head was covered with itchy, burning sores, I tried 3 weeks on the T-Gel shampoo.  The sores all cleared up.  Plus, there are other non RX coal tar products (shampoos and serums) out there for psoriasis -- they have all worked very well for me too.  Give it a month.  If the rash starts to clear, you will know it helps.  The coal tar serum is good if you are old like me and are shampooing the life out of your hair!

      So, I hope this helps.  What works for one may not work for others.  I still cannot get past the sores in my mouth without heavy duty prednisone.  Dexamethasone mouthwash helps, but does not cure, just makes things less painful.

  • janet14274
    janet14274

    Posted

    I was given Nizoral by the Doctor on the basis it might be a fungal infection which clearly it is not. I am going to persevere with the T-gel but I read an article on line which says there is a problem sourcing coal tar products,in the UK, of quite recent origin. The problem with the steroid is that it does affect my blood glucose. I had an HBA1C a few days ago and will find out how I am doing in 2 weeks time, after I see the dermatologist. I have come this far, so I must just keep going a little longer. I will see my lovely great granddaughter on Sunday so that will cheer me up. 
    • julia96551
      julia96551 janet14274

      Posted

      In addition to making my liver numbers wonky, the pred or other steroids do affect my normal blood sugar.  It went from 68 - 82 normally up to 101 sometimes when I was on the pred.

      Several years ago, I was in the hospital with a bad asthma episode.  They put me on IV salmuteral, a steroid.  Before he left his shift (I had been in the ER all night) the kindly night nurse asked if I would like some orange juice.  He gave me about 24 ounces in a huge cup, which I greedily drank down.  A hour later, the day nurse took my blood again before discharging me.  She freaked out because my blood sugar (between the steroid and the OJ) was over 300!

      I had to see my regular doc to make sure I did not have type 2 diabetes (like my late dad).  By then, I was off the steroids and it was about 80 again.  So the steroids can really play havoc with your blood sugar.

      Can you get coal tar products from outside the UK shipped in?  2 products I use are MG 217 3% coal tar (basically a soapy formula you wash out after about 15 minutes) and MG217 psoriasis 2% coal tar gel scalp treatment (a lightweight serum you can leave in that stops the itchy-burning).  Plus the T-Gel shapoo.

      They all smell medicinal.  And they all strip my dyed blond (grey/white) hair of color, but they do help a lot.

       

  • janet14274
    janet14274

    Posted

    We are given our numbers by a different formula in the UK. Mml/l. So,mI looked at the handy chart I downloaded and winced when I saw the figures. Diabetics are taught to eat the fruit not drink the juice. I will hang on now to see what the dermatologist says before I make any more self help decisions. I am down to 3 mg a day but today I feel slightly better than yesterday, and given that I am recovering from surgery that is not at all bad. I really hoped that the gallstones were causing the itching and when the gall bladder was gone the itch would follow, but hey ho!
  • janet14274
    janet14274

    Posted

    I have just had my diagnosis. It is not LP but they think Bullous Pemphigoid,. I am back on a high dose of prednisolone! I need to reassess my carbohydrate intake because I am diabetic, but if it is going to help I will do it. I have been assured of a much slower taper off this time. Thank you all so much for listening to me in the first place.
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