leeny
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Posts: 4,672
Location: Northern California
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Jun 27, 2014 1:55:53 GMT
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Post by leeny on Apr 6, 2017 4:31:06 GMT
My sister has just been diagnosed with Pemphigus and apparently it is rare and I want to help her find more info about it. Sure I could Google it, but trying to figure out what the real medical websites are is frustrating. Looking for advice!
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The Birdhouse Lady
Drama Llama
Moose. It's what's for dinner.
Posts: 7,235
Location: Alaska -The Last Frontier
Jun 30, 2014 17:15:19 GMT
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Post by The Birdhouse Lady on Apr 6, 2017 4:35:06 GMT
I've never heard of it but I hope you can find some good information. I believe there is a rare disease website, you might be able to find out some info there. Good luck to your sis.
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Post by elaine on Apr 6, 2017 4:41:13 GMT
The Mayo Clinic Site is reputable and has some information on both types of pemphigus. I hope that hers responds well and quickly to treatment.
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Post by mikklynn on Apr 6, 2017 11:57:39 GMT
I would also seek a second opinion. The Mayo Clinic recently reported that 88% of the second opinions they give revise or modify the original diagnosis. link |
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melissa
Pearl Clutcher
Posts: 3,912 
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Post by melissa on Apr 6, 2017 14:47:50 GMT
What kind? There are several. There should be a second word like vulgaris or bullous, etc.
A very long time ago, on the original site, there was a woman who had what I believe was pemphigus vulgaris who used to post a little.
A quick google search revealed Pemphigus.org, a website for an international organization that has links for support and clinical trials and the like. There is also a FB page. In fact, the entire first page of my Google search for pemphigus vulgaris (I am guessing this is the diagnosis) is all legit medical sites. I would start, however, with Pemphigus.org. She will want to make sure she is being treated by people who have seen it before and are up on the latest and greatest, including the very recent FDA approval of rituxan as a treatment (saw that in the Google search too, from just 2 days ago!)
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scrapaddie
Drama Llama
Posts: 5,090
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Post by scrapaddie on Apr 6, 2017 15:09:47 GMT
When looking for good info, a general rule is to look for sites that are .org or .gov. Start with those
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Post by scrapmaven on Apr 6, 2017 15:45:02 GMT
My mother-in-law had it back in the 70's. She was one of the clinical trial patients for Prednisone and was on very high doses for a few years. It cured her and she's never had another bout w/it. I don't know if the treatment is still Pred, but it was back then. I'm sorry that your sister has to deal w/this yucky stuff. ETA: After reading melissa's post I want to clarify that my mil had pemphigus vulgaris. |
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leeny
Pearl Clutcher
Posts: 4,672
Location: Northern California
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Jun 27, 2014 1:55:53 GMT
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Post by leeny on Apr 9, 2017 2:04:11 GMT
My sister has had many tests/biopsies. She is waiting for a final blood test kit to arrive from the East Coast (we are in California). She is being treated by a team of doctors in our town and the head of the dental school at University of California San Francisco Medical Center. The awful part is that she has already gone the Prednisone route and it didn't clear up, so the thought is if they can pinpoint the type, they can treat it with a more definitive round of meds. I'll steer her to the site melissa suggested. Thanks so much! |
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Post by corinne11 on Apr 9, 2017 11:22:14 GMT
Yes, I am a lucky 1 in 100,00 people diagnosed with Pemphigus Vulgaris.
I recently discovered the International Pemphigus and Pemphigoid Facebook page through a rare disease day page which is based in the USA. I saw a story from a woman in the US and I did reply to her but as her post was from 2014 I don't think she will see it.
I was diagnosed 13 years ago, just after my 40th birthday , which is a common age risk factor. I am also of Indian descent which is also a risk factor.
I took very high doses of Prednisilone every day for a few years, but have now transferred to Imuran which has a lot less side effects.
I am very lucky that it keeps my symptoms at bay, my specialist has other patients that can't work, often hospitalised etc.
I saw him a few months ago and he called in 2 other drs to look at me as he is amazed how well I am doing. (fingers crossed!)
I still get a few lesions on my scalp and my head burns terribly during hot weather in direct sunlight. That said, I holiday in Fiji regularly and go to the beach here too in Australia. Always wear a hat with 50SPF and sit under a UV shelter.
My mouth can get very sore and sensitive at times also.
My specialist nearly took me off the Imuran last year but then found 2 lesions on my head and decided not to. His reasoning is that I am on a very low dose (50 mg per day) and he is concerned that if it comes back it may be a lot more resistant to the drugs.
Imuran does mean that I have a higher risk of cancers, particularly skin cancers but he checks my skin yearly and I have mammograms and other tests regularly.
I have checked with my relatives in India and no-one knows of anyone with it and I have searched for support groups here in Australia with no luck.
If she does find any support groups, I would appreciate you letting me know- I agree that actually hearing about real people's experience can be very helpful.
When I try to explain what disease I have, I end up just saying it's an auto immune disease and it mainly effects my skin. Strangely enough, I just came across 2 photos that were taken of my chest and back area when I was diagnosed. Very scary, but as I said I have been very lucky so far.
Sending good wishes to your sister- the starting point is being diagnosed. I had terrible lesions all over me for 3 months before a formal diagnosis which came about mainly through a chance statement.
Originally my Dr thought I had impetigo (school sores). I am a teacher and had a student off school for a week with them and since I gave him medication daily, it seemed likely I had picked it up from him. Antibiotics were not working, I was in agony with sores spreading when I mentioned to my Dr that my gums and mouth were very sensitive. ( one of the first signs of pemphigus usually). I hadn't mentioned it before as I thought is was just after effects from having my teeth cleaned. He looked up photos in a medical book, rang the hospital who said it was very unlikely and they could fit me in for an apt in 4 weeks time (it was just before Christmas) I was told to come into emergency if my temperature got too high. (likely due to infection)
Luckily my Dr rang my now specialist who took one look at me, did a biopsy and gave me a prescription for Prednisilone without even waiting for biopsy results. I began to feel better and my skin started healing within days.
Corinne
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Post by elaine on Apr 9, 2017 15:55:21 GMT
Yes, I am a lucky 1 in 100,00 people diagnosed with Pemphigus Vulgaris.
I recently discovered the International Pemphigus and Pemphigoid Facebook page through a rare disease day page which is based in the USA. I saw a story from a woman in the US and I did reply to her but as her post was from 2014 I don't think she will see it.
I was diagnosed 13 years ago, just after my 40th birthday , which is a common age risk factor. I am also of Indian descent which is also a risk factor.
I took very high doses of Prednisilone every day for a few years, but have now transferred to Imuran which has a lot less side effects.
I am very lucky that it keeps my symptoms at bay, my specialist has other patients that can't work, often hospitalised etc.
I saw him a few months ago and he called in 2 other drs to look at me as he is amazed how well I am doing. (fingers crossed!)
I still get a few lesions on my scalp and my head burns terribly during hot weather in direct sunlight. That said, I holiday in Fiji regularly and go to the beach here too in Australia. Always wear a hat with 50SPF and sit under a UV shelter.
My mouth can get very sore and sensitive at times also.
My specialist nearly took me off the Imuran last year but then found 2 lesions on my head and decided not to. His reasoning is that I am on a very low dose (50 mg per day) and he is concerned that if it comes back it may be a lot more resistant to the drugs.
Imuran does mean that I have a higher risk of cancers, particularly skin cancers but he checks my skin yearly and I have mammograms and other tests regularly.
I have checked with my relatives in India and no-one knows of anyone with it and I have searched for support groups here in Australia with no luck.
If she does find any support groups, I would appreciate you letting me know- I agree that actually hearing about real people's experience can be very helpful.
When I try to explain what disease I have, I end up just saying it's an auto immune disease and it mainly effects my skin. Strangely enough, I just came across 2 photos that were taken of my chest and back area when I was diagnosed. Very scary, but as I said I have been very lucky so far.
Sending good wishes to your sister- the starting point is being diagnosed. I had terrible lesions all over me for 3 months before a formal diagnosis which came about mainly through a chance statement.
Originally my Dr thought I had impetigo (school sores). I am a teacher and had a student off school for a week with them and since I gave him medication daily, it seemed likely I had picked it up from him. Antibiotics were not working, I was in agony with sores spreading when I mentioned to my Dr that my gums and mouth were very sensitive. ( one of the first signs of pemphigus usually). I hadn't mentioned it before as I thought is was just after effects from having my teeth cleaned. He looked up photos in a medical book, rang the hospital who said it was very unlikely and they could fit me in for an apt in 4 weeks time (it was just before Christmas) I was told to come into emergency if my temperature got too high. (likely due to infection)
Luckily my Dr rang my now specialist who took one look at me, did a biopsy and gave me a prescription for Prednisilone without even waiting for biopsy results. I began to feel better and my skin started healing within days.
Corinne
Wow. What a journey! Thank you for sharing your story. |
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