Hi everyone. So after being diagnosed with Pityriasis Rosea twice, my biopsy came back as psoriasis. I dont even know how to feel but all they keep giving me is steroids. I dont want to be on steroids for the rest of my life. Ive joined a group to see what kind of help I can get from there.
Evangeline West: I also had 2 diagnosis of pr and the second time it hung around on my abdomen and I was diagnosed with guttate psoriasis. I havent gone on any steroids as its only been in places I dont usually lay bare. On the plus side, autoimmune diseases are more interesting to researchers so theres more known about gp than pr! Its worth getting your vit d levels checked.
Devin Sims: Thank you! I have the same. They did say to get out in the sun and he gave me a cream with vitamin D. It just sounds scary to have to deal with this the rest of my life. Is yours any better?
Evangeline West: Ive been away most of the past month and am reluctant to take more time off work to go for tests, but I had 1 day in the sun last weekend and saw improvement even though the rash itself wasnt exposed so I bought over the counter vit d and if that doesnt work on the next month it will be back to the doc.
Devin Sims: Evangeline West: good luck!!
Iris Ross: My boyfriend has psoriasis, he had to change his diet and that resulted in less flair ups
Devin Sims: I too have been trying to change my diet. More veggies. More water. Less sugar. Is that similar to what hes doing?
Iris Ross: Devin Sims: yes and no dairy, dairy makes it flare
Evangeline West: Iris Ross: I normally consume loads of dairy. But recently spent a few weeks in China where I had next to none and the rash got slightly worse. Considering howuch I love dairy that was a relief!
Devin Sims: Iris Ross: thank you!! It sucks cause I love cheese and milk but Ill have to stay away.
Devin Sims: Evangeline West: hmm maybe everyone has to figure out what works best for their body.
Iris Ross: Evangeline West: it may have been the food, some Chinese dishes caused him to flair. His dr told him no dairy, no night shades, no alcohol (but hes not about that life) and reduce gluten
Devin Sims: Iris Ross: night shades? I have noticed alcohol does make mine flare.
Iris Ross: Devin Sims: nightshades are tomatoes, eggplant, potatoes, bell peppers, cayenne pepper
Iris Ross: Devin Sims:
Evangeline West: That certainly seems to be the case but groups like this give you ideas of what to try and some emotional support from fellow spotty people!
Devin Sims: Iris Ross: I wish my doctor had gave me more Info. I felt like he kinda just said this is what you got. See you in 2 weeks.
Parker Rodriguez: I was telling everybody that I had psoriasis and I end up havingpityriasis Rose its about two and a half months now I pray it goes away seems like it happens every 10 years or so with me I had it in my forties and my 30s this is my third time having it and I think this is worse
Devin Sims: My feelings are all over the place. In a way I wish it was pr because then I know it would leave. Now with this, I have no idea how to handle it.
Parker Rodriguez: Devin Sims: same here now its causing my muscles to lock up thats part of the symptoms and fever thats part of the symptoms and headache
Evangeline West: Im still not convinced doctors know the difference! ðŸ˜‚
Parker Rodriguez: Evangeline West: you right about that one of the doctors I was trying to explain to him what it was and he was so confused that made me more anxious because I feel like hes not going to be able to help me because he dont even know what the hell it is
Devin Sims: Evangeline West: they tested a piece of my skin so I figured its gotta be that but I def. will be going for a second opinion.
Devin Sims: Parker Rodriguez: thats another thing. I felt like my doctor was just giving me the results and thats all. I was like ummm ok. What is this. Will it leave. What do I do. And he didnt really answer my questions. When he left, the nurse answered everything I asked him.
Parker Rodriguez: I had a biopsy done already but all they said to me is oh we can help you theres no cure I feel like they were just throwing me to the curb without telling me where to go and get help and get support or find out what to do I have the slightest clue what to do
Devin Sims: Parker Rodriguez: yesss same here!!
Parker Rodriguez: Devin Sims: I also feel like I was alone and nobody else had this but me and I was like why this always happening to me because I have eczema and rosacea to and writers skin
Devin Sims: Parker Rodriguez: when I got homeI googled everything and there wasnt much info so thats when I thought let me see if fb has a group an dim grateful I found a few.
Parker Rodriguez: Evangeline West: I did that Ive been on the internet a lot researching it but its not much information about it or how to treat it or get rid of it fast
Parker Rodriguez: Parker Rodriguez: when you try to talk to your friends about it or your family they was like get over it and then the friends was act like they care but they really dont care if they dont want to hear it
Devin Sims: Parker Rodriguez: yes or they say well at least its not cancer. And Im grateful it isnt but its our body and we have to see it and deal with everyday.
Parker Rodriguez: Devin Sims: you exactly right I dont even want to look in the mirror at my body anymore to me and look disgusting now
Devin Sims: Parker Rodriguez: oh trust me I know exactly how you feel ðŸ˜©
Francesca Brooks: Look into moo goo and goatsmilk soap. Both great for psoriasis
Parker Rodriguez: What aboutpityriasis Rosea
Devin Sims: Thank you!
Francesca Brooks: I found with my PR, it took sunshine , coconut oil and patience. ðŸ˜” Its a miserable thing. My psoriasis Ive had for more than 20 years and I find is much more manageable.
Devin Sims: Francesca Brooks: that sounds really hopeful!! Ive been using coconut oil and now they have me on steroids for the next 2 weeks. Any other suggestions to deal with the psoriasis?
Parker Rodriguez: Devin Sims: Ive been using apple cider vinegar Organic Raw
Parker Rodriguez: and my doctor gave me a medication that works pretty well too but you only allowed to use it for 7 days
Francesca Brooks: Devin Sims: the thing with psoriasis is its always there. It will have flare ups and downs over time but its not something that goes away like PR does. If its on your scalp, use Tar Shampoo or (Tshampoo) its nasty and makes yourhair feel yuck, but works …See more
Devin Sims: Francesca Brooks: thats what I was thinking too. But he said the steroids were to get it under control first and then we take it from there. He wasnt very helpful.
Parker Rodriguez: Francesca Brooks: I use this along with apple cider vinegar after I bathed
Parker Rodriguez: Devin Sims: but they can also make you worse
Devin Sims: Parker Rodriguez: I was worried about that too! My son used steroids for his eczema and it made it much much worse. When I stopped, his eczema got worse but eventually cleared up and he barely gets any flare ups anymore.
Parker Rodriguez: Devin Sims: yeah dont use those steroids they make it worse thats why I stopped
Parker Rodriguez: They say the steroids make you dependent on it so when you stopped it a comeback worse
Devin Sims: Parker Rodriguez: yes! You are so right!