Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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It might be worth your time to read deeply into psoriasis

Discussion in 'General ME/CFS Discussion' started by guitarmary, Oct 25, 2015.

  1. guitarmary

    guitarmary

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    Hello Folks,

    I read many, many posts in your excellent forum about a year ago, and am just now returning to make a post. A year ago I recognized many things I had in common with many of you, but figured I'd wait to post anything until I might have something constructive to add.

    Just in case the single post I recall with the person posting the symptom of gently touching a hair follicle that resulted in *pain* is still around and might be reading this post... Well, I might have an idea about your hair follicle thing now.

    I've had that hair follicle root pain thing too, which I'd describe as apparent bad hair follicle root inflammation that you can't notice on the surface of the skin. It's almost scary, the way it can surprise you to simply barely touch/graze a single hair and have it feel as if someone were suddenly giving you a severe electric shock to your scalp/skin on one tiny spot. And worse yet, you get it by the merest of touches. I have hated to wash my hair in the shower (what's left of my hair) from the pain it can evoke, and had never known what to make of it. I'm guessing that this odd inflammatory symptom could apply to a hair follicle's root area in the skin anywhere, not just the scalp, if you have psoriasis.

    You might have psoriasis and never have had it diagnosed; I realize in thinking back within my own medical history, that my start with psoriasis started in childhood, though I was around fifty before some a doctor with plenty of time might have diagnosed it from very clear and unmistakeable symptoms. (Actual diagnosis: when in my sixties, and then only because I'd seen a good rheumatologist.)

    Please read up on psoriasis. And remember to read the word "usually" carefully; if you were a "usual" medical case, you wouldn't be hanging around a medical forum like this one.

    Even if you "know" you don't have psoriasis and already know a little about that autoimmune disease, it wouldn't hurt to read more deeply now. I thought I knew plenty about psoriasis (from reading about it following my initial diagnosis years ago), but it is just sinking in on me now, how unusual the worsening symptoms from the worst cases of psoriasis might become. Psoriasis can get worse, much worse, in total body effects (not just the skin) over time. Some symptoms almost always go diagnosed under multiple simpler, more common diagnoses - but you can have a ton of them and they can get progressively more seriously life impacting in damage to many vital organs and can also cause amazing amounts of pain in new places.

    The plain old osteoarthritis diagnosis, for example, instead of arthritis associated with psoriasis, doesn't lead you to suspect psoriasis for the lower spine/colon/pelvic excruciating pain of feeling as if someone has put your two hips between a vise and progressively squeezed against your whole bottom area ever more tightly as nighttime immobility takes hold. But if you read more in depth on psoriasis, the light can suddenly dawn on you as to what the physical problem might be. Before some additional psoriasis reading and mulling-over lately, I had had been previously wondering about cancer of the colon. That's in spite of already knowing I also had psoriasis.

    The reason for my own further reading up on psoriasis:

    I went to a new dermatologist this past week, partly to diagnose a badly itching and sometimes oozing rash all over my font and back trunk - a rash that I'd already diagnosed as a likely result of a particular beta-blocker drug the cardiologist pressed me to give another try to, even after I'd already recently taken myself off the drug. (The drug: carvedilol.) I had already taken myself off of the drug the second time around by the time I saw the new dermatologist. (I had realized that I was so amazingly tired on carvedilol that if a fire were to break out in the house, I probably wouldn't be up to the physical task of getting out. Too tired, too weak. Really, no kidding, no exaggerating. When I decided that there was no one on earth who could persuade me to take another dose of that drug, I took myself off.) I had been off the drug again for the second time for about a week before seeing the dermatologist; otherwise, I would not have had the energy to make it in to getting the help I needed. I don't say I have much energy now either, but I could manage to make it out of the house to escape a fire or to see a doctor if I had to.

    (Note: If you happen to be in a similar fix of such a low amount of energy that you couldn't even make it out of your house if there were a fire, then at least give some thought to/deep research time into whatever pharmaceuticals you might be consuming every day, even if you don't know anything about psoriasis. In my experience, it often takes at least a few days for the dropping of a drug to start showing any real benefits, even when a huge benefit is eventually seen. And with some drugs there's an initial rebound effect, so you have to watch out on the speed of the drop.)

    The new dermatologist last week mentioned that my idea about the drug's causing the rash was accurate - that it's well known that beta blockers make psoriasis worse and that this rash was another form of psoriasis. (The rash could have easily passed for being covered with ant bites, or a really bad allergic reaction to some food, perhaps. I had been tested long ago as being allergic to every inhalant mixture tested for and *most* foods from a list of about 350 foods tested for. Otherwise, I hadn't been around an ant problem or knew of any insect infestations to account for the rash; the only thing I really knew when guessing about the drug's involvement was that the first appearance of the rash coincided in time with taking the drug, had slowly been getting better while off the drug, and then swiftly came back to a horrible extent when going back onto the drug.)

    Regarding the ill effects of carvedilol here, I still do have one apparent effect: the right arm tingling problem that was preceded by *intense* right arm pain for about 36 hours. Those things came on with the second attempt at using carvedilol as requested by the cardiologist. I've discovered that both those atypical arm things are reported potential side effects of using carvedilol, and I must have seen that same literature initially. But I probably just skimmed lightly over the potential problems when researching the initial prescription - what I usually do. I'm just assuming/hoping that this continuing effect on my right arm won't be permanent. Who'd ever guess that a blood pressure/heart drug that millions of people take could bring on such bizarre side arm symptoms - symptoms that I'd otherwise suppose could not logically be related to a beta-blocker?

    (No signs of transient ischemic attack that I could tell, or I'd have gone to the emergency room when the tingling started. I haven't totally discounted the possibility of increasing pressure on a nerve in the spine or shoulder now that's just a coincidence in time with restarting carvedilol, but am giving this a while longer to go away naturally if, as I suspect, it's totally drug-related. The initial terrible pain in the entire right arm does line up well with reported effects of the drug.)

    If you happen to be anything like me, you might have had a long, long list of highly negative but unexpected experiences with various different drugs (to the point of being life-threatening). It's possible that you have psoriasis and don't even realize it. But if you do end up figuring out a likely problem with psoriasis now (or your doctor does), it would be a good idea to check out psoriasis compatibility *first* before trying out a new drug.

    ===
    The nitty-gritty for me: I have multiple serious health problems and multiple autoimmune problems too, but psoriasis might be close to the root of generating many of them. It might be difficult to figure which came first, the psoriasis or some other large health issue like diabetes, but right now if I had to make a guess, I'd go with psoriasis.

    I wish I'd somehow managed to get some genetic testing done. I still think, though, that any actual benefits of genetic testing might be well down the road for later generations. Given that presumption, the reason I didn't keep pushing to have genetic testing done here was that I knew I'd have to be the one to pay for it. (My doctor had no idea of how to go about getting genetic testing done, or why it might be a good idea medically either.)

    The reason I was thinking along the lines of genetic testing: My daughter had a very limited genetic test done when pregnant with her first child. Her testing was for MTHFR (methylation) gene mutations, and those results showed her heterozygous for the genetic mutations A1228C and C677T. (The practical reason for her testing: she was prescribed a more appropriate vitamin supplement to support her and her child during pregnancy. She had to pay $200 out of pocket for that very limited genetic testing, even though I believe her doctor offerred the idea and she has relatively good medical insurance coverage too.)

    Anyway, my daughter's testing results suggest to me that I'm probably at least heterozygous for both those particular mutations too, and it might be worse then that; my husband is the healthy parent here. I also suspect that I might have other genetic mutation problems that are similar to some of yours, but there's no way to really know about that without putting more energy (and money) into the effort than I have available nowadays.

    ==

    That's it for now: I'm just posting to urge you to consider reading up in depth on psoriasis. If anything starts to ring a new bell for you in researching it, there might be a practical use for that knowlege in drug or other decisions in your future.

    I'll try really hard to post again if I think I might have some bit of constructive information for anyone. I'm too wordy to write many posts and lack the energy for much posting anyway, but do please know that your posts are very informative to others and very much appreciated.

    Best wishes, Mary
     
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  2. lansbergen

    lansbergen Senior Member

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    My husband got psoriasis after he was put on a betablocker.
     
  3. lansbergen

    lansbergen Senior Member

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  4. msf

    msf Senior Member

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    I actually thought I had Psoriatic Arthritis at first, just from googling my symptoms and remembering that my grandmother had had Psoriasis, but it turned out that I had the Reactive Arthritis flavour of ME. If only I had looked up my symptoms in a medical textbook and bothered to turn the page! I might then have taken antibiotics in the first few weeks, when they are most effective.
     
  5. slysaint

    slysaint Senior Member

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    Guitar Mary,
    Do you use any form of corticosteroid?
    People going through corticosteroid withdrawal (TSW aka red skin syndrome) an as yet unrecognised condition also suffer with the nerve pain etc you mention as well as a plethora of other symptoms including insomnia, acute anxiety, temperature disregulation,fatigue,burning skin. If you have a look at the ITSAN website you might get another bell ringing.
     
  6. barbc56

    barbc56 Senior Member

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    My mother had psoriasis. It would be especially bad in the winter. She had what looked like overlapping scaly rather silvery patches that would build up on her knees, elbows as well as along her scalp. They would itch but she did not get pain nor the arthritis.. She could be pretty miserable even though she only had them in a few locations.

    Do other BP medications make psoriasis worse?

    Barb
     
    Last edited: Oct 26, 2015
  7. guitarmary

    guitarmary

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    lansberge wrote
    >My husband got psoriasis after he was put on a betablocker.

    I wish everyone had this information....

    Theory: That your husband might have already had psoriasis, but not progressed far enough previously to have clearly visible signs showing up - that the drug just speeded up its progression.
    ==
    Jonathan Edwards wrote
    >Can you tell what you know about psoriasis?

    I can direct you to Google for a search on the word "psoriasis".

    A pretty good place to start that I'd also recommend would be the US government's medical information portal. Through it you can find links to links to links, and use Google some more to look up terms and ideas. I'm too new at PhoenixRising to post an actual link, but after the www it begins with a dot nim and then comes dot nih, and finally there's a dot gov ending.

    The name on the page calls it the "Medline Plus" website.
    ==
    msf wrote:
    >I actually thought I had Psoriatic Arthritis at first, just from googling my symptoms and remembering that my grandmother had had Psoriasis, but it turned out that I had the Reactive Arthritis flavour of ME. If only I had looked up my symptoms in a medical textbook and bothered to turn the page! I might then have taken antibiotics in the first few weeks, when they are most effective.

    Maybe a clue on that one might be to actually first have skin conditions that a dermatologist has diagnosed as psoriasis? Though still, I'd suppose that doesn't mean you couldn't have both psoriasis skin symptoms AND the reactive arthritis flavor of ME for arthritis problems. But I did just look up that information and I don't think I have that one.

    I personally fit so very many different worsening and newly occurring problems with the descriptions of worsening psoriasis that I presume it makes good sense to look at my arthritis problems in that light. (No, it doesn't make a big difference in a "cure" but if I'd really been up to date on psoriasis, it might have warned me about taking the beta-blocker drug that turned out to be a disaster.)

    Another thought here, and a part of the reason I thought that there might be someone here who might be helped with my posting about reading up on psoriasis:

    I couldn't help but think about my worst symptoms that came about as a result of taking that drug - not the skin problems, but the *extreme* tiredness and muscle weakness. I've been amazingly tired previously but still not that tired, and had never experienced such muscle weakness either. Knowing that badly worsening autoimmune problems can sometimes lead to total disability... and also knowing that a similar extreme kind of fatigue disability is what many users of this forum fear or already do have... a theory hit me.

    What if some of the folks who have CFS/ME also have as a complication (or perhaps alternatively have as the crux of their problem) a horribly worsened case of psoriasis? (Then I remembered the hair follicle poster here... and thought that maybe at least that one person has a psoriasis issue.)

    The horribly closest I've ever come to being totally disabled was what happened to me with the degree of fatigue caused by the beta blocker drug - my own atypical drug side effect. But maybe the total weakness and fatigue atypical symptom is, in fact, fairly typical specifically for psoriasis patients who've had the problem for a long time - or have taken that same beta blocker drug on previous days to make it get worse fast? Just as the skin worsening symptoms *came back swiftly and strongly* for me on the second go-around on that disastrous drug?

    Nothing in the drugs dot com slash pro site where I looked up my drug information stated whether there was a likelihood that those suffering the skin symptoms also tended to be the very same people to suffer some of the other atypical symptoms that I also suffered from. If that happens to be true, maybe the predictor for a group of multiple rare symptoms showing up would have been psoriasis?

    Anyway, the similarity of my amazing tiredness drug symptom with the degree of disability of some CFS/ME people - the problem we all fear - sort of hit me hard every time I thought about it. I'm guessing that there are some people who read this forum, who, like I felt with the drug, would have some trouble in gathering the energy to get out of the house in some kind of emergency.

    Maybe some individuals here might be able to blame some portion of their suffering on psoriasis, whether that disease has been diagnosed yet or not? I wish I were a medical researcher; I'd try pursuing this theory...

    ==
    slysaint wrote:
    >Do you use any form of corticosteroid?

    I just started on a cortisone kind of topical treatment that the dermatologist prescribed. I'm going pretty light with it, as I know the risks of skin-thinning involved. But it is definitely helping.

    A long time ago arthritis got started here, and I lived for a good while with the pain and worsening crippling effects before seeing an orthopedic specialist. He gave me a cortisone shot directly in one knee (that started as the main problem) that worked like a miracle and lasted for several months. Going back later, the next shot lasted about a month. He was willing to give as many as two or three shots a year, but the negative effects on my diabetes management were amazingly strong and lasted for days. And I'd read that if you got too many different shots of that seemingly good thing, it could also make arthritis worse over the long haul than if you never had any cortisone "cures" at all.

    So after the third (unsuccessful) cortisone shot to my knee, I haven't been back for more cortisone shots in a long, long time (ten years?). I do have arthritis in the other knee too and in joints all over my body. The only real thing I've done has been to sometimes take supplements that might have some help with lowering inflammation generally, and some herbals that help you ignore to some extent the pain that you still feel (chief among them = passion flower).

    As a strategy for pain management, at one time I went heavily into using naproxen sodium (Aleve). I had been familiar with that before it became an over-the-counter drug in the US, because with all my daughter's various sports injuries and orthodpedic operations, she took a good bit of it, apparently safely. Anyway, my internist later warned me off taking so much Aleve quite some time ago now (8 years?), as he felt that in the long run it could make many of my various problems worse. I think I've only taken a couple of Aleves a couple of times since that warning.

    Interestingly, I noticed in reading up on psoriasis that some over-the-counter meds for pain are thought to make psoriasis worse. I do sometimes take a baby aspirin for times with cardio concerns, but not usually otherwise.

    The rheumatologist was trying to help me with pain but I reacted horribly to the one drug he started out trying and then I wasn't willing to actually try the second one after reading up on the potential problems there. (I tend to react to prescriptions amazingly badly and amazingly regularly. I have learned the hard way that if I'm not willing to risk the unusual reaction, it's better to avoid the drug altogether.)

    ==
    Folks, I very much appreciate your comments and willingness to think about my ideas. Thanks for writing!

    Best wishes, Mary

    P.S. Barb, the reply to you is way too LONG. I'll rewrite/shorten and post the reply to you soon. Thanks for your interest!
     
  8. barbc56

    barbc56 Senior Member

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    No worries. Take your time. I might look uo some info.
     
  9. barbc56

    barbc56 Senior Member

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  10. guitarmary

    guitarmary

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    I also spent some time today looking, and this link is probably the best one. Thanks!

    I'd add that I don't think this is the whole story in answering your question - and an extension of your question to the whole problem of predicting all the drugs you might want to try to avoid if you know you have a psoriasis problem... which is the practical question confronting me now, after this really bad experience.

    I don't think that a really good answer exists, though. Absent more detailed information coming out sometime in the future, I am going to be paying some extra attention to another drug list I have for interfering with blood sugar control. (I'll share some of my long-winded thinking in this area when I get the rewrite done.)

    I'm pretty sure I know what you meant to type here, so I'll rephrase that to:

    Mary, do you mean that 1) Psoriasis causes ME/CDF? OR 2) That ME/CDF causes psoriasis? OR 3) The symptoms of two distinct diseases happen to show some overlaps?

    My reply:

    NOT #1 or #2. I'm not a disease expert, nor am I sufficiently arrogant to make such an obnoxious claim from my mere introspection and personal experiences.

    My ideas are consistent with not knowing how any medical theory might apply to any one particular patient, but I'm leaning toward GUESSING between a selection of

    Alternative #3...

    OR alternative #4: That in some specific patients (a minority, likely), symptoms of psoriasis *might* be confused for what the patient or her doctor thought likely to be CFS/ME.

    OR alternative #5: That in some patients who have a for-sure diagnosis of CFS/ME, their condition might have been made hugely worse by the additional but unrecognized presence of psoriasis adding to the misery. The effect of the two variables might even show a interactive-boosting effect (so that the sum of the problems shows a geometric worsening - LOTS worse to endure than a simple additive effect of the two CFS/ME & psoriasis conditions' separate miseries added together).

    ==
    I *might* be just such a patient as fitting under Alternative #4, in fact, or perhaps I'd fit better under alternative #5 (if I'd had a for-sure CFS/ME diagnosis).

    My only diagnosis of CFS/ME was a self-diagnosis. I brought up my strong suspicions to my cardiologist in January, but he poo-pooed the CFS/ME idea. My degree of heart failure was plenty bad enough to explain the fatigue, he said. I didn't see the sense in arguing with him over the issue, and I didn't bring it up with the neprologist, either. (There's the little complication of kidney functioning too....)

    I just decided on my own that I had far, far too many symptoms and experiences in common with you folks to quit thinking about CFS/ME and looking for any little tips from patients here that might help me to help myself. (Some of my unusually worrisome health experiences date from deeply back into childhood (infancy, even) - long, long before any heart disease or kidney function loss. I have very long medical memories for myself, and they begin to add up after awhile.)

    Barb, I appreciate your interest, and will get back to you with a little more soon.

    Best wishes, Mary
     
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  11. slysaint

    slysaint Senior Member

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    "I just started on a cortisone kind of topical treatment that the dermatologist prescribed. I'm going pretty light with it,as I know the risks of skin-thinning involved."

    If you look on the ITSAN (international topical steroid awareness network) you will see that topical steroids can do a lot more damage than thin your skin.
    They might appear to work for a while, but then you need stronger ones.
    At first glance you might think the site only applys to people with long term use, mostly people with eczema, but there are loads of people who had never had eczema before, and after relatively short term use of TS end up with steroid induced eczema for which they are prescribed.....topical steroids or prednisolone.
    There are two Drs, Dr Rapaport in the US and Dr Fukaya in Japan who have done extensive research on the issue. The NEA in the US have only just reported on a preliminary investigation into the effects of topical steroids with regards to RSS/topical steroid addiction.
    Anyone using Topical steroids(steroid creams/ointment) should do a search on steroid induced /Red skin syndrome/topical steroid withdrawal etc. In addition to ITSAN there are loads of blogs and videos on YouTube.
     
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  12. guitarmary

    guitarmary

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    Oh, dear. I'll start in on educating myself today. THANK YOU!

    Best wishes, Mary
     

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