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Will my skin & hair go back to "Normal"?

Posted , 9 users are following.

Elijo
Elijo

I started 40mg pred in Nov., then down to 30mg, tapering and now down to 10 & 5 alternate days.  I cut and bruise without even realizing it, had an infection and lesion is still being treated.  My question to you experienced PMRers, will myi skin go back to normal eventually, or is this now a permanent condition which I've been told by 2 medical people, but I don't want to believe it.

Next question is that I can't do anything decent with mhy hair, it frizzes up, seems to curl more, no body.  I have to wear a wig when I go to a special occasion in order to look decent.  Will this improve?

Next question is that since I started with the pred. treatment I have never had a recurrance of the pain and terrible stiffness I suffered before the dx.  It does seem that most of you on this site do have painful occurances.  I am wondering if there is anyone on this site like me who have not suffered (yet) while taking the pred.???       I do suffer fatigue, and my muscles are much weaker, little energy.            Elinor

1 like, 18 replies

18 Replies

  • kathy67492
    kathy67492 Elijo

    Posted

    About a year into the PMR my hair was awful...lost about a third of it. It was dry and brittle (of course it had already been bleached too!)...I could not do a thing with it. I cut it as short as I could and tried every possible conditioner and treatment. It was like plastic dolls hair! However, it did recover about 3-4 months later...back to normal...!?
    • Elijo
      Elijo kathy67492

      Posted

      Hi Kathy, So there may be hope for me.  My hair is like straw, growing very slowly now.  I realize bleaching does NOT help, but the added color did give my hair more body.  Hope you are doing well!        Elinor
  • FlipDover_Aust
    FlipDover_Aust Elijo

    Posted

    Hi Elinor

    From what I understand (from my rheumy) your healing rate will improve, but your skin will remain 'thin'.... I have an old ladies hands and I'm only 52 - he said that won't change. But I'm healing better now my dose has come down.

    I love that my hair now 'frizzes'! it's the first time in my life I've had 'curls' lol  Yes, it will improve once your'e off the pred!

    The muscle weakness is probably from the pred. Fatigue is never helped by pred - it does nothing. You are still on a decent dose so that might explain why you've been lucky enough to get no return of PMR pain. I am very surprised at the 10/5 alterating dose. Who told you to do it that way? I personally believe you could be heading for trouble if you don't slow your taper down - and fast!

    • dan38655
      dan38655 FlipDover_Aust

      Posted

      I'm sure that this is different in different patients, but for me it was always a too-low dose of prednisone that caused my fatigue to return.

      My fatigue was at an absolute worst point when the initial test-dose of pred was stopped after two weeks at 20mg, and I even developed a fever, but even at lower and very low doses it has been the level of fatigue that was/is one of the main things that always prevented me from reducing my dosage further.

      Alternating doses are interesting in their effect.  I was even alternating between 5mg and 0mg at one point, and I did notice a dramatic sensitivity to pred on the days that I took it.  This was good and bad, as there was a weird feeling I got when I took it that seemed to make me feel warm and perhaps agitated in some uncomfortable way.

      But on the 5mg days the dosage had a longer-lasting effect, seems that the body had become much more reactive to the pred as a result of the day off, so I was able to soon change back to a daily dose but at a much lower dosage of 3.5mg instead of the initial 5mg/day.

      My next reduction to 2mg was effected by splitting dosage and taking these in the evening at 6pm and 11pm, and I have recently been able to drop that to .5mg at 6pm and 1mg at 11pm, once my fatigue and pain symptoms (and sleep disruption) had leveled off.

      For any big steps in dosage, even if it is just the even-number days that use a reduced dosage, be prepared to adjust dosage quickly in response to any flaring up of symptoms. Such adjustments can help bridge any change in dosage with just a couple of days of a slighty-boosted dosage. Certainly the doctor cannot call all the shots as far as an individual patient's need for such real-time adjustments!

    • FlipDover_Aust
      FlipDover_Aust dan38655

      Posted

      hmm, interesting!

      do you think the fatigue was caused by the lack of pred or your adrenals not being able to pick up the slack?

    • Elijo
      Elijo FlipDover_Aust

      Posted

      Thanks.  However, I'm not doing the 5mg., but am doing 7.5mg. on my own volition.  I do NOT want a flare.  My internist is the one handling my case.          My hair is like straw!  I do have a naturalllllll wave and some curl, bu this ugly!          Good luck to you.          Elinor
  • tina-uk_cwall
    tina-uk_cwall Elijo

    Posted

    Hello elijo, before I comment on the skin and hair question, please clarify. Are you presently reducing 1 day 10mgs followed by 1 day 5mgs? Regards, tina

     

    • Elijo
      Elijo tina-uk_cwall

      Posted

      Hi Tina,  Yes the MD said 10 one day and 5 on alternate days.  However during this tapering process, I am dooing 7.5 instead of 5.  I'm to start 5 every day on 5/15, but am going to do 7.5 for a while for fear of a flare (which I have never yet had).           Elinor
  • Bergey
    Bergey Elijo

    Posted

    Hi Elijo,

    i am nearing the end of my "second round" of prednisone within 17 months and am presently at 5 mg.  My Rheum. has me decreasing 2.5 mg each month.  Like you, my pain, stiffness and fatigue was rapidly eleviated upon starting Prednisone, with no obvious reoccurrences during the course of taking it.  Last summer, when I last tapered to 0, I was fine for about 6 weeks, then had what I realize now was a three day "flare up", which incidentally coincided with the extreme stress of a family emergency.  The symptoms gradually returned over the next two months to their full fury, so I was started on 15 mg.  I do not know if my healthy eating and very active lifestyle ( play Pickleball, bike, walk and swim 1-2 hours every day) has any bearing on my having felt well while on the prednisone.  Of course I have gotten the typical prednisone side affects which I call "feeling like a hampster running on his cage wheel" or worse, the aggravating anxious feelings that come upon you.  Yes, skin thinner , cut and bleed easily.  After reading these blogs, I will be speaking to my Rheum. about really slowing down my Pred. From this point on and suggest the DSAS routine to him, instead of his suggested decrease to 2.5 mg for 4 weeks then stop.

     

    • Anhaga
      Anhaga Bergey

      Posted

      Bergey, print out a copy of the plan and show it to him.  My doctor (who I have to say has always been very reasonable about tapering) was quite intrigued with it and said to go ahead with using it.  Up to then she'd said one mg per week, which had been fine from 15 to 10.  Now it's about 1 mg per month or six weeks, so the slow taper has definitely been working.  I've just reduced from 5 to 4 mg, took about a month, much slower than your proposed taper, and I expect to be tapering as low as .5 mg before attempting to stop. This could take many months, perhaps even a couple of years depending how PMR is - that has to be considered, not just the pred withdrawal and it almost sounds as though your doctor doesn't understand that pred is not actually curing the condition, only controlling the inflammation.
    • Elijo
      Elijo Bergey

      Posted

      Thanks for your reply.  Regarding stress:  I do think that has a lot to do with it, espec. since shortly before I was dx I had so many different stresses you wouldn't believe it.  I am going to be super careful about reducing since I'm down so low now next to where I started end of Oct. on 40 mg.  Instead of doing the 5mg. I'm goin to do 7.5. Am now doing 10/7.5 alternate days alth MD said 10/5.  I do NOT want flares.   You have been very active, and along with your good diet I reallyi thinks that is a positive.  I  have a good diet, too, was fairly active (less now) which mayi have helped me, along with an excellent eimmune sysem (no more).    I hope you continue to do well!       Elinor
  • mphooey
    mphooey Elijo

    Posted

    My skin was thin even before this nonsense began 2 years ago, As far as my hair, it was always thin and limp and I started using Rogaine. It got curly so much people thought I had a perm. So I can't help as far as pred being the cause, becuase I didn't notice that for myself. 

    I am on 5 mg pred now, as well as methotrexate and humira. Can you embrace the curly hair?

    • Elijo
      Elijo mphooey

      Posted

      I can embrace some curly hair which my natural hair has some curl and natural waves, but it is now like straw and "icky".  I joined a group "Piano Friends" just recently, had to play on stage Saturday, so I wore a wig.  There are such natural ones available now,  and not really expensive at all.  Hope you continue to do well!       Elinor
  • Anhaga
    Anhaga Elijo

    Posted

    With regard to the skin.  At slightly higher doses (around 5-7) I was getting small purple marks on my forearms.  Touch wood, the last one I had was really tiny, about .5 cm diameter, and went away quickly, and that was several weeks ago.  So I think skin condition does improve.  I hate to think that the old woman skin will remain, as I feel like my arms and hands look like they belong to an eighty year old.  Possibly my face has aged as well, but I think not quite as much, or maybe that's just wishful thinking.  Being nearly 69 is old enough anyway, probably won't make much difference what I look like from here on.  cry
    • Anhaga
      Anhaga

      Posted

      Hair naturally curly anyway, harder to control and very dry lately.  Also growing faster, but at lest it seems to have stopped falling out.  Think the muscle weakening has slowed or stopped, but I have very little stamina.  
    • Elijo
      Elijo Anhaga

      Posted

      I have inherited very good genes and am 88, probably the oldest on this site, but look and seem to act much younger, so folks are realiy taken aback when I tell them my age.  I have relatives who have lived past 100.  So my new thin skin can match my age.  Now isn't that a blessing? (ho hum)  I have received many complements on my facial skin.  Don't I hate that?  (of course not).   I could do so many physical things that younger people do, but now don't have the energy or ability.  I hate it!  My mother died at 92 of Parkinson.s and I keep telling myself that I am fortunate to have what I have since Parkinson's is a horrible disease, espec. as it progresses.  My mind is in top shape, but I do have brain fog and don't think or remember as clearly as I did a few months ago.  Any comments on this?      (PS:  The moonface has depleted me of my wrinkles, altho I did n't have a lot of them, and look younger!  Aha! A benefit at last!)
    • Anhaga
      Anhaga Elijo

      Posted

      Elijo you are a marvel.  I always looked much younger than my age so this disease has been a double whammy, making me older than my chronological age.  Oh well.  Vanity of vanities, all is vanity....
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