PRURIGO TREATMENTS --Evaluating Cures

When people come to our PN message board ( Prurigo Nodularis Support ), many different treatments, therapies and cures are posted. Some of them are very expensive, some are dangerous, some are worthless, and some are highly beneficial. For those of us who have PN, how do we decide which things to pursue and which to ignore?

 

I thought it might be helpful to post here the criterias I use before pursuing a treatment to combat my aggressive PN. My list below might be useful for some other PN members who don't quite know how to respond to some of the spectacular claims that are frequently presented to us by others.

So here are the things I consider before pursuing some of the supposed PN cures:

1- How credible is the source? I put a whole lot more weight on those who have been on the PN message board for quite a while and a lot less weight on those who are newbies. That doesn't mean I discount what newbies say; I just wait a little longer before jumping at their cure.

2- How many people on this PN board have gotten better by the cure that was posted? Obviously the bigger the number of people who have improved by doing a certain treatment gives me greater confidence to pursue that solution myself.

3- How expensive is it? If something is too expensive and I can't afford it, it does me little good, no matter how effective the cure appears to be.

4- How convenient is it? If something is readily available to me than I give it serious consideration; but if I have to travel a long ways to see someone or go some place, I am a lot less likely to pursue such a treatment.

5- How big are the risks? If something appears beneficial but has a very high risk of bad side effects, then it is better for me to avoid such a plan of action.

6- How desperate am I? If my PN is flaring up and making my life hell, then I am much more willing to take bigger risks. But if my PN is in a manageable state, then doing less risky things like improving my diet makes a lot of sense.

7- How much controversy is there about the cure? If there are a whole bunch of articles on the internet about the negative effects of some purported cure, then I will naturally put up some mental barriers. If in contrast I find a whole bunch of supportive information on the web, then I will be more open to the cure. Of course it isn't as simple as just adding up the number of negative web sites compared to the positive ones; the credibility of each of the sources plays a major role in how much weight I give the controversy that I find about a particular treatment.

8- How weird is it? I give the biggest weight of support for those things that seem reasonable and good, such as changing my diet or taking vitamins or pills or applying ointments that have a proven track record. The weirder something gets the more cautious I become, such as people who claim to heal you over the phone or spirit beings from another dimension or universe telling me what I should do. Again I am not against a cure just because it's weird; if all the other factors I have mentioned above come up with satisfying answers, I am more than willing to do weird things to be freed from the curse of PN.

9- How vague are the claims? In order for me to make an informed decision about whether I should pursue a particular treatment or cure, I need to know some pretty specific details so I can make a wise and informed decision that affects my health. Details such as: How much does it cost? Who administers the treatment? What exactly is the treatment? How many people have been helped? What kind of side effects are there? Where do I have to go to get the cure? I appreciate those who take the time to give us clearer details as to what the cure is, because that helps all of us here to analyze claims with greater determination as to what course each of us will take personally.

10- Does the person stick around on the PN board? During the past year I have watched as at least four different individuals showed up on our PN message board shouting they had "The Cure!" but then when they were challenged a little bit to provide us with clearer and better information about the validity of their claims, they either went away in a huff or just never responded at all. For those of us who have been on this board for a while, we have little or no respect for such people who just breeze in here blowing on their trumpets proclaiming "The Cure!" and then wanting us to get out our wallets and pay them or the person or company they are advocating for their supposed miracles.

If you go into a crowded theatre and yell "FIRE!" You can expect two kinds of responses: If there really is a fire, the people who take you seriously and save themselves from the flames will appreciate you for the warning and be very grateful. But if the people discover there is no fire, then that group of people will turn on you and feel negatively towards you.

The same is true on this PN message board; everyone here has suffered miserably and most of us are desperate for a cure. If indeed you have that cure, we will be most grateful to you; but if what you say is a false alarm, don't expect sympathy or kindness.

Keep in mind, though, that we recognize that we don't all respond well to the same treatments. I got better by NBUVB, whereas one of our members got 50 times worse! But the people here don't accuse me of giving them false hope, because we all have learned the sad truth that our bodies don't all respond the same to the many different things we have done and tried in order to get better.

 

 

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