Worse for wear but I'm still here:)

YI YI YI. The previous 4 months to the present have been trying and rather awful; hoping to see this 'bout of 'stuff' start improving.

Think the last post I wrote was about having hand-foot-mouth disease. Well, it wasn't. And it's been a journey.

I got real sick within a few weeks of that post. Ran a fever for 26 days in a row. And dense, blister-type things covered the bottom of both feet, palms of my hands, tips of 4 fingers on both hands, and in the palms of both hands. Around these, my skin was peeling off by the layers. Did you know we have 7 layers of skin? I didn't.

Saw my Internist who had no idea what it was. BTW, this toward the begining of the Ebola crises, and she was the only Doc I saw about this that was smart enough to ask me if I had traveled in that region, or out of the country. I love her. She's top-notch.

But she had no idea what I had and ran 26 blood tests. Of significance was the my liver enzymes were tripled. On a repeat test the following week, they had quadrupled. Don't drink at all and all my meds were ruled-out as a cause.

I had a regularly scheduled appointment with my Neurologist toward the begining of all of this. He, too, had no idea, what I had. However, what concerned him the most was the my temp was 100.2. I don't consider that a fever or much of one, but he sent me directly to the emergency room because of it. He said ANY fever in a person with PSP is dangerous because it can trigger/worsen many of PSP's symptoms and/or cause major regression. This info both surprised & frankly scared me quite a bit. I hadn't heard him be that foreboding in a quite a while.

Here's one part most can relate too. My Sister had driven that day and took me to the E.R. Nurse up to the top guy had no idea what was growing on my feet/hands, but most frustratingly had NO IDEA WHAT PSP IS or the significance of the fever with PSP, which is why my Neuro sent me there to begin with. MADDENING! Sat in that stupid room for over 3 hours and nothing got done. Cranked up my volume and paged the nurse to get the Doc in there 4 times. NO SHOW. Insisted to the nurse the DOC call my Neuro about why he sent me there at least twice. When the Doc finally showed up he just mollified me and sent me home. Nor would he give me a direct answer if he talked to my Neuro.

A person in my position, or any who has a chronic, serious illness, much less a rare one just shouldn't have to thru this nonsense. A positive that came out of it was my Sister hadn't yet attended any doctor appointments with me since I was diagnosed the summer of 2012. While sitting in the ER room waiting for nothing to happen, she kept repeating "Unbelievable!", and started peppering questions at whoever walked in the room after the first few hours. She got a quick education in all things PSP as well as experience the FRUSTRATION we with PSP and/or caregivers of persons with PSP run up against too often.

It annoys me to the max when I can clearly describe what PSP is in a few sentences - got it down to an art and a science - and have the medical provider stare at me like a doe-in-the-headlights and either say they no nothing about it and/or get egotistical because I know something they don't and am trying to be a good advocate for myself. Just really ticks me off!

Both of my Docs told me I obviously needed to see a Dermatologist about what was growing on my fingers, hands, and feet. I just groaned. It is common knowledge here in frost MN, USA, where our 'summer' is just 2-3 months long, it's a 2 to 3 month wait to see a Dermatologist. Why? Because too many people up here don't use sun screen using the short summer as an excuse, resulting in lots of people with skin cancer. My ex-husband's was treated for it 2 years ago; it was serious. A beloved cousin of mine just had a tumor removed from the side of his face, but the didn't get it all. Both were told it was from not using sun screen. It really is a big problem up here.

Tho I had a referral from Internist, damn, it was one big fight to get seen sooner than the usual waiting time. I had to get loud, then louder to get secure an appointment 2 weeks out. Then they called me 4 times to change it! Crazy-making stuff, I'll tell you.

During this time, I could barely walk, if at all, because the bottom of my feet were so sore, as well as my hand/fingers, ran a fever, etc.

I finally got to see a Dermatologist mid-October (I first noticed this stuff mid August, but it was just beginning and I didn't start feeling 'sick' till after Labor Day. I was diagnosed with 2 kinds of psoriasis, the tips of my fingers being one type, the palms of my hands and bottom of my feet another. Didn't really know much about psoriasis til that day, especially since neither of my Doc's recognized it as that, nor the E.R, but we can write them off anyway....

The kinds I have, especially the feet/hands is uncommon. It is an auto-immune disorder which means it will probably reoccur. This Doc was quick to point out it is first considered genetic, then autoimmune, because you have to have a specific gene to begin with. My Dad had psoriasis when he was in his 20's, but it was on his scalp. I have early memories of it because he was 20 when I was born, and I remember him blowing up like a balloon because he was on steroids for 10 years. He died 8-2-10, after being diagnosed with cancer on 6-30-10 with stage 4+ stomach cancer. We spent much time together. The last week I was up north with him he spoke of his battle with psoriasis as a young person and how much it embarrassed him due to the appearance of the disease itself, and an incredible weight gain.

The Dermatologist stated the psoriasis starts almost always when an individual is around 19 or 20 because it's such a pivotal time of life, the immune system is suppressed, and it triggers. She said it was surprising it triggered in me at the age of 56 but wasn't unheard of. She said she wished she had a med student with her because mine was a text-book case of it.

The proper way to treat it is with oral steroids but she didn't want to do that because of elevated liver enzymes. Both my Neuro and Internist believed the lesions, the fever, and elevated enzymes were all related. The Derm just shrugged her shoulders when I brought that up. So she sent me off with prescriptions for 2 lotions; one a topical steroid, the other vitamin D.

Every day since then I have to put a thin coat of both on all affected areas. At night, I have to wear cotton gloves on my hands and wrap my feet in saran wrap. Yup. Saran wrap. Simply yuk!

The Derm also strongly suggested I see a Rheumatologist not only for the psoriasis, but I'm at a much higher risk of developing psoriatic arthritis which is a whopping can of new worms, not to mention dragging a 4th Doctor into my mix. Uh uh. Not now anyway.

The last lesion I had was about a month ago, but the skin-peeling has been going on since mid September. And it's painful as heck. I lost 3 layers of skin on both of my heels and arch of one foot. My fingers have peeled backed, grew new skin, just to peel back again. Just saw my Internist last week; she was considering sending me to a Burn Unit for debridement but I talked her out of it. And, I've been cutting dead skin away for 3 months now. My liver enzymes are "almost normal" again, and my sed rate (amount of inflammation) is "really high" but to be expected, she said. Also agreed I didn't to see a Rheumotolgist -yet.

I Very much want this psoriasis episode to be DONE. 4 months since I 1st noticed it. Because my liver is in better shape, she prescribed a course of Prednisone starting at 50 mg a day.

I got it filled and have been eye-balling the bottle lovingly on my nightstand. But. my daughter Katy, has the flu; the real deal. She's been careful to avoid me, but if I take the Prednisone, it will knock out my immune system for about 2 months. And I have had a low grade fever all week. Do I dare start taking it?

The flu is rampant up here now, but I don't go out much, I didn't get a flu shot because of my liver being sick; doing my Xmas shopping on-line and finishing today. I do have an appointment with my Neuro next week. He scared me with the fever/PSP info. Hope I don't have one that day. I really can't get sick with flu. Katy's been running a temp of 102 degrees but it coming down by the day. And, I really can't end up in the hospital either with a diabetic dog who needs 2 shots of insulin a day, etc.

What do you think? Should I chance it and start the Prednisone or wait...???? Til/for what? The flu around for some time. I'm this side of desperate to stop shedding skin and let these wounds heal and be done with this stuff. To anybody out there who has Psorasis , I empathize with you. It can be a big deal.

And how has all of this affected my PSP?? Uh, not good, for sure. I'm not up a lot because my feet burn which doubles my imbalance. Even sitting, my balance has been off. But mostly my memory. Yi Yi Yi. The stuff that's been coming out of my mouth. Or not.

I need this to be over. Prednisone now or wait? I'm afraid if I ask either of my Docs, they may say wait. At the same time, this outbreak has taken 4 months of time I have left that I can't afford to lose.

Sorry this is so long. Making up for lost time. Have any idea how long this took to write?D:) With just my good fingers.....? Ha!

Best wishes to everybody out there. I've been so under-the-weather, just couldn't get this done.

Love,

Judy

MN

USA

16 Replies

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  • Hi Judy, I and I'm sure everyone else missed your posts and I am glad you are back. You don't need all this do you? I'm sorry I can't help with your question but hope you do get help to make the correct decision. I hope your daughter soon recovers from the flu and that it stays away from you. I really do wish you a speedy recovery from this awful condition affecting your skin. It must be so distressing on top of everything else.

    I'm sending you a great big hug to let you know You are in my thoughts and prayers and I wish I could be more help.

    Love Nanna B

  • Thanks, Nana B. I've missed everyone but, boy, this really put me down all this time.

    I called both my Internest and Neuro about 2:45 to ask them. Decided to be prudent.

    All of the Docs at my Internest's practice were gone for the day. Same with my Neuro.

    Nice life....

    Did speak to a nurse who said to call back Monday.

    I just took a hard look at the bottom of my feet with a mirror and a flashlight. Yup. Not very flexible these days but this works for me. I haven't had any lesions in a little more than a month which I thought was a good sign...perhaps this was coming to end....but still left with peeling layers of skin. Unfun.

    What I saw is a have new lesions on one foot. Not many, but it seems to me from experience this whole cycle is starting to repeat itself when I'm not healed up from the first episode.

    So I took my 1st dose of Prednisone. I can't give another day to this, w/o trying to make it better. If I have to stop it, I will.

    Wish me luck! 50 mg of Prednisone late in the day will pack a punch and keep me up tonight....but I have much shopping on-line to do anyway....:)

    Fondly,

    Judy

  • I hope it works Judy. I hope you manage to get some sleep......that said by someone who has just returned from doing the weekly shop, leaving home at 10.30 pm and getting back at 11.45 pm. I waited for the night nurse to arrive. It's now 18 minutes past midnight so I think I had better sleep.

    Night night.

    X

  • Oh Judy, I'm so glad to hear from you - I've missed you, and been concerned - and so sorry about your horrible ordeal. I can only imagine the pain and frustration, although you certainly write, as always, very well about it all. And there you are shopping for Christmas, while I've been griping that I just can't find the time, when really I just haven't felt chipper enough for it. I will stop that griping now.

    As far as the prednisone, I have seen it work miracles with bad skin infections, but have also had a friend go through hell with its side effects. I don't know what to tell you. I wish I could help. Thanks for taking the time and effort to write. Hang in there, my dear. We are all rooting for you. Love and Peace, Sarah

  • Thanks, Sarah. It is good hearing from you. Gripes are allowed. See my post:)

    Xmas shopping isn't my favorite thing to do, either. Just isn't. Neither right nor wrong.

    But this is the 2nd year of doing it on-line. I just don't have the stamina to deal with crowded stores and long lines; stuff made of nightmares, for me, anyway.

    See my reply to Nana. I found new lesions on the bottom of one of my feet. Haven't had that in a month, a little longer. This cycle is starting to repeat itself. I cannot let that happen. So I did take my dose of Prednisone.

    Best wishes to you always.

    Judy

  • So I'm sitting here now feeling sick and foolish. My temp has spiked to 101.4. Never that high with the psoriasis before. Worried, tho. I just can't land in a hospital right now. Damage (?) is done by taking the Prednisone, but my body needs RELIEF from this nasty skin disease and all the inflammation that comes with it.

    Took my first 2 Ibuprofen in more than 2 years to bring my fever down. Had stomach trouble early 2012 and had an endoscopy. 6 areas of erosion of the lining of my stomach were found due to long term use of Ibu and/or Naproxen because of my osteo arthritis in too many joints. Was told by that Doc never to take either again.

    So this is the 1st time in close to 3 years my will get some relief from inflammation, arthritis, psoriasis, ect.

    Sound pathetic, eh? The steroids actually had me up cleaning. Wrong thing to do.

    Wish me luck; hoping for a big turnaround this weekend...

  • Good to hear from you again Judy, but wished it were under better circumstances. I'll be interested in your progress with the psoriasis treatment. Keep us all informed.

    Take care and trust you'll find the corticosteroids alleviate your symptoms.

    T.

  • I'm happy to hear from you, Strelley. I've always respected and admired your input and posts. I realize I'm rolling the dice with starting the Pred now, as well as using Ibuprofen to keep my fever down, which I was told not use about 3 years ago.

    But, I have to follow my intuition on this and decided to ACT on this by starting the Pred as well as the Ibuprofen. I've had 3 Docs kind of twiddling their thumbs about all of this for months now, they well intentioned. They don't always have answers and with waits of weeks or longer between appointments, I've just been laid-up, shut-in, and in a lot of pain.

    If I made the wrong decision, I'll find out soon enough. It's been truly debilitating on top of the PSP, and has caused regression indeed.

    Just feel I need to try to get control of my health and quality of life if it's at all possible;now; before it spirals out of control again.

    Thanks for your support and interest as always.

    Fondly,

    Judy

  • HI JUDY GOOD TO HAV EU BACK ON THE SITE - YOU HAVE BEEN MISSED

    I WOUDL TAKE THE PREDNISILONE NOW RATHER THAN WAIT - IT MSUT BE A SHORT TERM MED ANYWAY I WOUDL HA VE THOUGHT

    (THANSK FOR THE FWD BY THE WAY - I LOVED IT DESPIT EIT BEIGN POLITICALLY INCORRECT_)

    LOL JILL

    HUGS AND XXXX TO YOU AND YORU DAUGHTERS

  • Thanks for your support and and input.

    And...I'm really glad you took my email in good spirit!

    Fondly,

    Judy

  • BULLOUS PENTHAGOID !!! my husband has always been troubled with skin irritation which was put down to Psoriasis, his mother had it before him . other in the family also has sensitive skin and was told they had more layers of skin than most people !!!!!!!

    it started to get more worrying for him and the H gave all sorts of different creams for him to try , until one day large dense blisters seemed to appear in front of my eyes .

    I didn't know whether to try and burst them or leave well alone , So I started Googling and came across BULLOUS PENTHAGOID , went back to Gp and suggested it .

    that's what it was , saw a dermatologist who told us it was an immune problem and quite rare which would burn itself out in fiv years ,

    was given steroids for a short whil and cream but I found it best to keep clean and in som cases try and burst them and keep dry others would disperse back in . they left marks for a very long time but at the moment seems to have gone . I feeil it will rare its head unless very careful

    see if you can find some pictures , let me know how they compare . my husbands was mainly on his body but also sole of feet and big toe so take care not to rub ,

  • Interesting. But I'm so sorry to hear he's had to endure all of that. But it sounds like you're taking good care of him.

    Pictures...I don't know...it grosses me out as it is. Is it helpful to know one of my thumb's looks like it belongs to a corpse? Seriously! Yuck. Until the skin peeling begins, leaving it raw as can be, than the skin grows back into the yucky layer or 2 that is both painful and hard to look at...until another peeling process starts. This has repeated itself so many times since September.

    Enough is enough. For sure.

    I hope his situation is stabilizing.

    Take good care,

    Judy

  • It's 6:19 in the morning and haven't slept a wink because I took my first high dose of steroids about 4 p.m yesterday. It does pack a punch, for sure. Will definitely take it earlier today. Which might mean I won't sleep til tonight perhaps. But I just had to take this leap. Suffered enough and got caught in the 'system' for these month with 3 Docs who don't talk to each other and at the mercy of scheduling needs within their schedules. Still griping about that. Need to stop it.

    Good new is the IBU did break my 101.fever and I only intend to use to keep the fevers at bay. But my insides and outsides are jumping for joy that I finally have anti-inflammatories coursing thru my veins again, including the Prednisone.

    Got shopping done on line over the night. Spending $ like I have it, but what the heck. I can blame my fever & my declining lack of executive decision making...ha!

    I have this overwhelming urge to clean, clean, clean, which I started doing last night til I realized how high my fever was. I swear it's the first time I saw I had rosy cheeks versus my Scandinavian (and sick) pail skin...ha.

    Judy

  • Hello Judy,

    I am so sorry to her all that you have been going through.

    The blisters sound like Bullous Pemphigoid.

    My father has PSP and also Bullous Pemphigoid, diagnosed as soon as he saw a specialist dermatologist.. He used to get terrible blisters, often on hands and feet but not just there - though I don't remember him having a high temperature with them. He had steroid tablets and cream for the skin blistering which worked well. As the blisters returned when he stopped taking them he has taken a low dose steroid continuously for the past 3 and a half years - no more blisters in that time.

    I have asked in the past on this site if anyone else has this condition. It's another really rare condition affecting only 4-5 people in 100,000. I don't think they are listed as being linked, but it is really hard luck to have two such rare conditions and interesting to hear that there are at least 3 people on this site with both.

    I know that doesn't make it any easier for you though - I am so sorry that you are going through this. I hope that your medication helps and quickly - the steroids should work.

    With love, sympathy and very best wishes,

    Morag

  • Did you sort out the problems you had with your teeth, Judy? I do hope so.

    Morag x

  • Hi Judy, how are you doing? I do hope your skin condition has improved and you managed to enjoy Christmas. I also hope you avoided the flu, too much to cope with already.

    Take care Judy and may 2015 be brighter for you.

    Love

    Nanna B

    X

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