psoriasis does it get worse with time?
Question:
- Hide quoted text — Show quoted text – >|| Lafiel wrote in a prior post in this thread: >|| I thought that the NPF (and others) published that the >|| more severe the psoriasis coverage, the greater the >|| statistical chance that you would contract psoriatic >|| arthritis? >| >| Nope. >Well, I remember reading long ago from the NPF either in >some literature or their website that those with severe >psoriasis had a greater chance of also having PA. So, >it follows that if you can keep it from progressing to >severe status (coverage over xx percent of body as said >by NPF) then you would statistically be better off with >regards to having PA later on.
No, it doesn’t necessarily follow. First, worsening is not a given. Most people’s psoriasis never progresses beyond mild. While other people’s starts almost immediately at severe. I met a woman at last years’ P conference like that. Second, psoriasis is not something you can treat preventatively other than avoiding known triggers, and is known to have ebbs and flows with no apparent reason. So you can’t necessarily keep it from progressing to severe if you are predisposed that way. But probably the most important is that all that is reported is a correlation between severe P and PA. That’s not the same as a causality. There may well be something else in common -perhaps something in the gentic underpinnings- between those people whose P does go to severe and those people susceptible to developing PA. >| Not true so far as I know and pretty sure the NPF >| at least has never said any such thing. >Is true as far as I know.
Sigh. What am I supposed to do, stick my tongue out in response? >A quote from the National Psoriasis Foundation: > "Psoriasis covering more than 10 percent of the body >is considered severe. Extensive areas of skin may be >covered with psoriasis plaques or pustules, or >widespread erythrodermic psoriasis (as shown in the >photo to the left) can cause severe peeling of the skin. >People with severe psoriasis are more likely to develop >psoriatic arthritis."
Which was of course all I asked for – a reference. Thank you. Clearly I was wrong about the NPF, although their statement is not the same as you are saying. The NPF is just saying those with severe P are more likely to get PA, rather than the direct correlation between degree of severity and likeliness to get PA that you are making. In other words, if you have 10% coverage you are more likely than others statistically, but they do not say that 20% coverage makes you more likely than that person with 10%. While all they are doing anyway is noting a general correlation, not stating a causation. Thanks for the quote. The link to it is at http://www.psoriasis.org/b200.htm#severe_psoriasis if anyone else is curious. Best of luck dealing with your P and PA Kim The Psoriasis Newsgroup Resource FAQ can be found at http://pfaq.cjb.net but will also be coming soon (twice a month) to a newsgroup near you…
Response:
It could all go away next week and never come back, or not. I’ve had this thing for 40 years and there have been periods, sometimes 2 or 3 years, where I’ve been completely clear. Now it’s bad, total coverage. What I’ve learned over the yeas is it seems to improve if you can ignore it. Fiddlying around with Doctors & creams & herbs & theories doesn’t work. Good luck with it and my advice is (which you shouldn’t listen to ’cause it’s a crazy theory) is ignore it.
– Hide quoted text — Show quoted text -> I have had P for nearly 6 months now, mainly on face with some on chest arms > and legs. Face looks pretty ordinary but I have no pain or itch with any of > it , just patches varying in color from pink to red. Patches are not raised > significantly and i dont seem to be developing any new spots. Have tried a > number of the usual treatments without any dramatic results, even had > methotrexate for 5 weeks but liver test came back bad and had to stop ( > ALT-100) if that means anything. Dr had now prescribed neotigason but I am > thinking of not taking it. at this stage it is really a cosmetic issue and > I dont think I should be putting my health at risk just to look good, in > fact according to the side effects list I could end having my hair fall out > , which wont look so good either. > is this likely to get worse? am I likely to develop the pain and itching > that many of you unfortunately seem to suffer? Have people generally found > it gets worse with age? ( I am 42). is there value in trying to nip it in > the bud now? Fortunately cost isnt a big issue here in Aus as medical > benefits cover the bulk of the cost. > Terry
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>> On a consistant basis, mine has gotten worse. My doctor > said that it was because I did not treat it for a long > period. I got to the point where applying the silly > ointments, etc was more trouble and time consuming than > was worth the small amount of help they did. >I thought that the NPF (and others) published that the >more severe the psoriasis coverage, the greater the >statistical chance that you would contract psoriatic >arthritis?
Nope. Not true so far as I know and pretty sure the NPF at least has never said any such thing. Don’t know about others. Can you provide a link? The only thing I know even remotely along these lines is that I heard a derm at an NPF sponsored event say that those with nail involvement were more likely statistically to get PA. Nothing even about that on a quick search of the NPF site now (may have been on the old site). >I have wondered about the physical mechanism underlying >the statistics. Perhaps a greater number of lesions >means there is a greater chance that one of them will >contribute enough fungal spores into your bloodstream >that will float around and infect something else such >as the lining next to the cartilage….
Why would you think that this might be the case? Psoriasis is not a fungus and so it would not contribute fungal spores, although you can have both. As well say that opening your mouth to eat could have the same results, I’d think. While PA is not a fungus either and so would not be caused by this sort of think happening in any event. >As guesses go, I had been assuming that until I can >find a better guess that will successfully replace it >in my quest for understanding and avoiding as many >risks of getting PA as possible.
It’s a genetic predisposition, as with psoriasis, so I’m not so sure you can avoid it in this way. Kim The Psoriasis Newsgroup Resource FAQ can be found at http://pfaq.cjb.net but will also be coming soon (twice a month) to a newsgroup near you…
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|| Lafiel wrote in a prior post in this thread: ||| On a consistant basis, mine has gotten worse. My doctor ||| said that it was because I did not treat it for a long ||| period. I got to the point where applying the silly ||| ointments, etc was more trouble and time consuming than ||| was worth the small amount of help they did. || || I thought that the NPF (and others) published that the || more severe the psoriasis coverage, the greater the || statistical chance that you would contract psoriatic || arthritis? | | Nope. Well, I remember reading long ago from the NPF either in some literature or their website that those with severe psoriasis had a greater chance of also having PA. So, it follows that if you can keep it from progressing to severe status (coverage over xx percent of body as said by NPF) then you would statistically be better off with regards to having PA later on. | Not true so far as I know and pretty sure the NPF | at least has never said any such thing. Is true as far as I know. A quote from the National Psoriasis Foundation: "Psoriasis covering more than 10 percent of the body is considered severe. Extensive areas of skin may be covered with psoriasis plaques or pustules, or widespread erythrodermic psoriasis (as shown in the photo to the left) can cause severe peeling of the skin. People with severe psoriasis are more likely to develop psoriatic arthritis." | Don’t know about others. Can you provide a link? I hadn’t saved the links; I tend to save tidbits of info in order to help direct my own treatment. I know that I had read similar statements elsewhere at other sites and/or literature. It is not my interest to argue or find some reason why someone is wrong, just as it is not my interest to sit passively and wait for someone to tell me an answer. I try to think about the facts that I know, add to it discussions with derms, and temper it with my own experience and observations. I’ve also talked with two doctors who have medical interests in psoriasis (derm) and they are independently both of the same opinion that the statistical chance of having PA correllates with more severe psoriasis (represented as coverage on the body). It was a bit awkward getting doctors to talk about prognosis, as they seem to not want to say anything that would make me feel "discouraged" or depressed in any way, and so it took a bit of work to get the doctors to open up about some things like that or speculate as to what vectors trigged new psoriasis lesions in my case. I and they know it was speculation, but I had pointed out that I wanted to know a little more so that I was able to take advantage of any degrees of freedom not constrained by my current psoriasis treatments in order to experiment and try to develop new data and information about my own psoriasis condition. They could understand that viewpoint and certainly knew that I had a research and development engineering background to help me along. I try not to have wishful thinking or denial about PA. I don’t want to be tempted to slack off or to find a convenient excuse to not go through the laboriousness of the treatments and topicals. There is that other classic cliche of the "ostrich head in the sand" trick which I do not use. If you don’t see the problem, or deny it, then there is no problem. Well, I am not a fan of this ostrich technique as cute as it is to see an ostrich. That is why I don’t slack off on treatment because I don’t want my psoriasis to slide more into the severe 10% or greater end as described by the NPF. It is tempting to slack off. I can hear that naysaying voice in the background saying that severity has no influence in whether or not you get PA. But from my own experience in other disciplines, I can draw many parallels where severity does increase the chance of something else bad happening. In this case, the more severe the psoriasis I have, the greater statistical chance that I have of getting PA later on. But for now, I refuse to listen to naysayers as I will try my darndest to move out of the severe range. Besides, the NPF, other websites, and two doctors treating me seem to agree on the statistics. Certainly, it is no guarantee that PA will occur, but if I can help it, I will try to be statistically least likely as I can. Lafiel
Response:
Terry: As you’ve seen so far, every person seems to have some variances to thid disease. It seems there are several categories, each on opposite ends of the spectrum. What I can tell you from me is I’ve had periods where it was worse and periods where it was good. It seems it depends on what you’ve got going on in your life (stressors), diff. treatments you are trying, etc. On a consistant basis, mine has gotten worse. My doctor said that it was because I did not treat it for a long period. I got to the point where applying the silly ointments, etc was more trouble and time consuming than was worth the small amount of help they did. What I’ve found that works best for me is, as I stated elsewhere here, bathing with baby oil or applying it after the shower and then immediately following with a good lotion, switching soaps (I switched to dove unscented…I used Cetaphil for a while on my face) I use gloves when cleaning. Consistently, sun exposure, salt water and several trips to the beach 
, and uncovering the skin. Again, I’ll state that my dr. said that had I consistently used treatments on the psoriasis, there’s a good CHANCE, I would not have come down with PA. If there’s any truth to that, I don’t know, but leaving the condition unchecked, according to the MD is not a good option. I agree with the other person who stated Neoral may be a better option for you to try. My doc started me on the most simple, most probable drugs and worked our way up. Right now I take a mixture of cyclosporin, methotrexate (only 3ml b/c it upset my system) and depo-medrol shots. He is doing a trial with me right now. I didn’t notice a huge difference right away with the neoral so he said he wanted to take me off of the Neoral when spring came IF…I would promise to get in the sun as much as possible. After being off the drug for about 3-5 weeks, the P and PA came back stronger than before. I started getting in the sun more and it is helping keep the P at bay. I’m not sure about the PA. I saw someone else posted about getting a flare in the fall. I do too, and can almost predict what kind of winter we’re going to have. On a consistant basis, if my P gets bad in September, we have a bad winter. Otherwise, it’s usually december or january when it’s at it’s worse. The few years I tanned year-round (tanning bed in winter) my winter flare was about 75% better than years prior. Sorry so lengthy…I tend to ramble, but though I’m not an MD, my experience would tell you to keep it at a check, but use your common sense on the prescrip. meds. Does the rist outweigh the benefit? Is the P painful (mental or physical) to the point your life is affected? Ask your doctor if there is some other treatment he would recommend before trying the drug you’re afraid of and get his opinion if this is really the best treatment. Some docs don’t like you to question their opinion. My doc always listens to me. Someone had suggested I ask him about trying sulfameth–(sp?)…don’t know the spelling but I asked him about it and he looked back in my file and explained why he didn’t think that would be a good choice for me, as my p and pa seems to be very stubborn. Hope this helps. Jill
– Hide quoted text — Show quoted text -> I have had P for nearly 6 months now, mainly on face with some on chest arms > and legs. Face looks pretty ordinary but I have no pain or itch with any of > it , just patches varying in color from pink to red. Patches are not raised > significantly and i dont seem to be developing any new spots. Have tried a > number of the usual treatments without any dramatic results, even had > methotrexate for 5 weeks but liver test came back bad and had to stop ( > ALT-100) if that means anything. Dr had now prescribed neotigason but I am > thinking of not taking it. at this stage it is really a cosmetic issue and > I dont think I should be putting my health at risk just to look good, in > fact according to the side effects list I could end having my hair fall out > , which wont look so good either. > is this likely to get worse? am I likely to develop the pain and itching > that many of you unfortunately seem to suffer? Have people generally found > it gets worse with age? ( I am 42). is there value in trying to nip it in > the bud now? Fortunately cost isnt a big issue here in Aus as medical > benefits cover the bulk of the cost. > Terry
Response:
> On a consistant basis, mine has gotten worse. My doctor > said that it was because I did not treat it for a long > period. I got to the point where applying the silly > ointments, etc was more trouble and time consuming than > was worth the small amount of help they did.
I thought that the NPF (and others) published that the more severe the psoriasis coverage, the greater the statistical chance that you would contract psoriatic arthritis? I have wondered about the physical mechanism underlying the statistics. Perhaps a greater number of lesions means there is a greater chance that one of them will contribute enough fungal spores into your bloodstream that will float around and infect something else such as the lining next to the cartilage…. As guesses go, I had been assuming that until I can find a better guess that will successfully replace it in my quest for understanding and avoiding as many risks of getting PA as possible. Lafiel
Response:
>is this likely to get worse?
Big fat, maybe. Mine started around age 35 and has slowly gotten worse over time. Your mileage may vary. There may be some value to treating it a bit more aggressively when it’s still new, but I don’t know if that’s what they teach in med school. If your case is not that severe, I’m surprised they’d suggest neotegison, which has the side-effects you’ve noticed. I think you get extra points when it’s on your face. Still, I’d think that in most cases Neoral would be tried first, that would be my impression (from studying my own options, none yet exercised). I’m still waiting for this new Amevive stuff, which to me sounds very promising. Gonna be really expensive, though, if and when it gets approved for general use, which is guestimated at early next year for the US, no idea what that means for Oz. OTOH, sometimes it gets better with time. I suppose you’re getting some UV light from sunshine, at least – unless you’re one of those where it makes your psoriasis worse instead of better. There may be other options to try, I guess I’m saying. Best wishes, J.
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No. My psoriasis is less than it was 40 years ago when I first noticed it. I read a book (I cannot remember the title), it was 20/30 or so years ago about avoiding things like bread and advocating acidophilus, garlic etc). I hadn’t heard about a gluten free diet. I haven’t adhered to a strict diet over the years as I haven’t got the perseverance but found that non dairy acidophilus (if nothing else) certainly helped. I used to suffer a lot of stomach problems before so sorting those out might have led to less stress etc., which is also supposed to effect psoriasis. You are luckier than I as you have the internet at your disposal to search for information and there are people on this newsgroup who are very helpful. "Medscape" today sent me a link to abstracts on recent research on Psoriasis so the outlook is much more hopeful these days. If you are interested in the latest research try Medscape. It is free to join, to search and get newsletters. www.medscape.com
– Hide quoted text — Show quoted text -> I have had P for nearly 6 months now, mainly on face with some on chest arms > and legs. Face looks pretty ordinary but I have no pain or itch with any of > it , just patches varying in color from pink to red. Patches are not raised > significantly and i dont seem to be developing any new spots. Have tried a > number of the usual treatments without any dramatic results, even had > methotrexate for 5 weeks but liver test came back bad and had to stop ( > ALT-100) if that means anything. Dr had now prescribed neotigason but I am > thinking of not taking it. at this stage it is really a cosmetic issue and > I dont think I should be putting my health at risk just to look good, in > fact according to the side effects list I could end having my hair fall out > , which wont look so good either. > is this likely to get worse? am I likely to develop the pain and itching > that many of you unfortunately seem to suffer? Have people generally found > it gets worse with age? ( I am 42). is there value in trying to nip it in > the bud now? Fortunately cost isnt a big issue here in Aus as medical > benefits cover the bulk of the cost. > Terry
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Response:
Are you familiar with the common abbreviation YMMV? (Your mileage may vary) That about sums it up. No one can predict whether yours will get worse or not. I have read that with many people there are no symptoms at all until they are in their forties. I am sixty-two and I can tell you that mine gets better in early spring and through much of the summer. When the days start shorten it gets worse again. I have had P all of my life, but it did get worse when I was in my mid forties. At age 53 I got so fed up with the constant itching, pealing and weeping on my scalp that I shaved my head and have kept it that way ever since. My entire scalp was covered with P. Over 90% of it cleared within just a few weeks. Exposure to the sunlight and using my UVB cabinet helps more when combined with the topical meds that I use. I use Dovonex, Desowen and Olux Foam on the plaques in different areas. Sometimes they are very effective and others don’t seem to help at all. All I can add is good luck and try your best to keep a positive attitude. Chuck – Hide quoted text — Show quoted text – > I have had P for nearly 6 months now, mainly on face with some on chest arms > and legs. Face looks pretty ordinary but I have no pain or itch with any of > it , just patches varying in color from pink to red. Patches are not raised > significantly and i dont seem to be developing any new spots. Have tried a > number of the usual treatments without any dramatic results, even had > methotrexate for 5 weeks but liver test came back bad and had to stop ( > ALT-100) if that means anything. Dr had now prescribed neotigason but I am > thinking of not taking it. at this stage it is really a cosmetic issue and > I dont think I should be putting my health at risk just to look good, in > fact according to the side effects list I could end having my hair fall out > , which wont look so good either. > is this likely to get worse? am I likely to develop the pain and itching > that many of you unfortunately seem to suffer? Have people generally found > it gets worse with age? ( I am 42). is there value in trying to nip it in > the bud now? Fortunately cost isnt a big issue here in Aus as medical > benefits cover the bulk of the cost. > Terry
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I have had P for nearly 6 months now, mainly on face with some on chest arms and legs. Face looks pretty ordinary but I have no pain or itch with any of it , just patches varying in color from pink to red. Patches are not raised significantly and i dont seem to be developing any new spots. Have tried a number of the usual treatments without any dramatic results, even had methotrexate for 5 weeks but liver test came back bad and had to stop ( ALT-100) if that means anything. Dr had now prescribed neotigason but I am thinking of not taking it. at this stage it is really a cosmetic issue and I dont think I should be putting my health at risk just to look good, in fact according to the side effects list I could end having my hair fall out , which wont look so good either. is this likely to get worse? am I likely to develop the pain and itching that many of you unfortunately seem to suffer? Have people generally found it gets worse with age? ( I am 42). is there value in trying to nip it in the bud now? Fortunately cost isnt a big issue here in Aus as medical benefits cover the bulk of the cost. Terry
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