- Messages
- 15
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
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
