Guttate P with NO Infections???

[sapphire4373]

Hi all!!
I have had guttate P for going on 14 years now. I will be 29 soon and I can't figure it out. I had to find a new derm because my other one was just a waste of time in my opinion, but I went thru every cream, ointment, lotion, you name it I have it. They stopped working in a short period of time, and some even made it worse. So I went on MTX almost a year ago now, which helped greatly, but every time my dosage is decreased it comes back.
I am soooo tired of being asked if I had any recent infections. I can barely bring myself to say NO anymore.. LOL
The thing that gets me is almost every place I look refers to guttate as a "childhood" condition and that once you treat the infection it goes away!! (I must be the exception) When I was a child I had strep every year without fail, BUT I never broke out with P until I was 15. I didn't start to see a derm until 3/2000 because it was tolerable and I knew what it was because a few members of my family have it.
I broke out big time with 80% coverage and intense itching that I thought was going to drive me insane so I decided it was time to see the derm (Hence 3/2000)
Sorry I am starting to ramble on here.....my question is this....I have been seeing posts on various boards about ppl getting their tonsils removed and it helps them a great deal. I have another appt on March 7th which I am going to ask my doctor about this, but has anyone went thru this? Or know of anyone that did? Did it help or does it sound like I am grasping at straws here?? Any help would be greatly appreciated as I am currently on 15mg MTX and it is coming back again :( my face is itching terribly even on the atarax. But if this is a possibility and it just might get me off MTX do you all think I should explore the issue??
Thanks so much for any replys.

All My best,
Lisa

[rosee_posey]

Hi Lisa,

I'm sorry I can't answer your question about tonsil removal, but I can say this:

1. If Guttate is a childhood thing, it didn't happen that way for me either. I got my first bout of Guttate when I was 29.

2. Why did your dermy insist on backing off the MTX? Was it hurting you? Did you get a liver biopsy? There are people who post here who have been on MTX for YEARS and YEARS, on higher doses than yours. So I'm curious as to why you can't stay on it, especially if it's working.

3. IMHO, if you got 80% coverage, no amount of topical treatment is really going to work well for you. In my experience, the time I spent shlepping ointments and creams on my body wasn't really worth the time. If MTX is not a viable solution - you may want to discuss other systemic solutions with your doctor, like Cyclosporine or Accutane (I say accutane b/c unlike Soriatane, you don't have to wait 3 years to have children).

4. Contrary to popular belief, a liver biopsy ain't so bad. Really. If you need the inside scoop, read "MTX and a Beer", posted earlier here on the message board. (or just ask me and I'll fill you in.)

Hope this helps,
- rose

[Angef]

Well, I too think my p started after repeated bouts of strep. No doctor ever mentioned the relationship between the two. It has just been an onbservation of mine that there is a link after reading posts here and other reading about the condition. I was diagnosed with pustular psoriasis about 3 years ago and had my tonsils removed 3 2001. I can not tell that it has made any difference at all. I was on Metho about 2? years ago and after about 8 months on it my p was cleared completely. It is just now in the last couple of months starting to reappear. I am using Temovate, but will probably go back on the Metho soon. I took 60 mg of Soriatane, maybe your doc needs to up your dose. Email me if I can help in anyway!
Ange (nailsx10@yahoo.com)

[timba]

I am fifty-seven years old, had my tonsils
out when if was a child. I am a grown up
and broke out with psoriasis one year ago.
I am currently on cyclosporine. Did the
creams, light treatments nothing helped. I
am having a bad day. The pain and itching
is undescribable. Thanks for stating you
are are becoming insane. It may not help you sanity but hearing your story doesn't
make me feel so alone. Keep on rambling and
babbling on. It will help you and others
out there like you and me.

[sapphire4373]

Thanks for the replies. To respond to your questions rose, I think the reason my derm is backing off the MTX is because it has cleared me a great deal, at one point I was totally clear, that is when he dropped me from 30mg to 10mg weekly and it started coming back right away. I told him that and he just gave me the run around so I started seeing a neew derm last month and he has me on 15mg a week for a month now. I go back on the 7th so I will have to wait and see if he is going to keep me at 15 or raise it or what since like I said it continues to come back since I was lowered after vmy inital clearing. I haven't had a biopsy yet but my old derm was concerned about "macrocytosis" the big red blood cell thing. I think you were at the one Q & A session I asked about that. (I could be wrong if it was you or not). I saw a different doc the first visit I had to this new center and he sent me for labs to start combination therapy with MTX and cyclosporine but when I went back I got a different doc who said he didn't want to risk my liver and my kidneys at this time! Well jeeze what the hell are they waiting for?? This is why I get annoyed and want to just say the hell with it sometimes. I am going to ask him about the tonsils but I am willing to bet he will say no to that too.
I will post a follow up after my appt. on Thursday just to let any of you who might be interested what he had to say about it.
Thanks again for your input rose and Ange.
Lisa

[rhop]

Hi, Lisa - I am one of those people who have been on mxt. for years and years (12). It was a wonderdrug for me for the first few years, and I have never had any significant side effects. However, the nature of this disease is that it ALWAYS comes back when various forms of treatment are discontinued, at least from what I read here on the message board. Although your dermy was trying to be cautious because mxt.is a very toxic substance for some people, even if you had stayed at the same level and never backed off, eventually the p. would have probably begun to get worse, and the mxt. would have had to be increased. Sometimes this takes years, however; in my case it has lost its effectiveness and I'm getting much worse, but NOT being on it is so much worse that I continue it. I have been taking 35mg per week for years. I don't even want to know about my liver sometimes, but my rheumy has never suggested a biopsy, and my blood work every 8 weeks is always good. Have you actually had an episode of macrocytosis, or is he just speculating? Best of luck, and keep us posted. Rosemary

[rhop]

Hi, again - Just wanted to say that I had my tonsils and adenoids removed at age 5, devloped the mild p. at 17, and the severe p.a. at 40, and am now 52. I don't think the tonsils had anything to do with it, but repeated infections might. Auto-immune diseases are thought to be triggered by exposure to a virus or infection plus a genetic predisposition, plus unknown other environmental factors. This is a generality, but we just don't know any more than that right now, and can only speculate.
Let's just hope research moves forward quickly enough to bring relief to some of us "older ones" as well as you younguns. Best Wishes, Rosemary

[jstureb]

Hi! I have guttate, scalp, planter palmo?, plague and psoriatic arthritis. As far as me and my mother can remember I have NEVER had step throat or any other strep infection. I know I wasn't even sick when I began breaking out in July 2001. I have also read everything that says that it is caused by strep in childhood, but that isn't even poss. for me because I was 24 when I broke out. Oh well I guess we are people they need to study, huh! RiAnnon

[sapphire4373]

Once again thanks for all the replies. To rosemary, yes I actaully still have macrocytosis, but the new derm I am seeing isn't worried about it. Well to let you all know he said that having my tonsils removed probably wouldn't have any effect on the guttate P, I was told that the mtx usually clears it for long periods of time, but I seem to have a case that doesn't want to "settle down and behave", that is exactly what I was told!! Then he told me the risks of surgery are great....and I told him I have had surgery before, and I would tyhink the mtx risks are greater then surgery, but it was a mute point. So I am going to see an ear, nose and throat specialsit on April 9th to see what he has to say. They and some of you might think I am nuts for pursuing this as greatly as I am, but I figure if it could help ANY it is worth it, besides who needs tonsils anyway. LOL. Sorry it took me so long to get back to you all but I was busy, by the way the derm upped me to 17.5 trying that for a month, and if not I don't know what he has planned next. But I will let youall know what the other doc has to say on the 9th. Thanks again everyone!! Take care,

Lisa

[KerBear]

Hey. I definitely started out with plaque p, I've had it since I was about 6 years old. I am now 22 and have both plaque and guttate p...I just got guttate p about 3 or 4 years ago. Yeah, I don't understand their descriptions either.