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Discussion:
Pemphigoid
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Is there anyone out there that has pemphigoid?
i need to chat with someone that has this disease.
I have been suffering since 2002 and have tried many meds without sucess.
waiting to here Susan
Posted on 05/15/10, 10:12 pm
5 Replies Add Your Reply
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Email me when others reply to this topic help
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Reply #1 - 05/16/10  7:50am
" Hi Susan,

You sent me a message back in January but as I only received it a few days ago I have only just replied. If you can't find my reply come back to me and I will pass on what I said. Basically about the amazing success of retuximab (Mabthera) after trying out many other drugs.

Cheers

Phil "
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Reply #2 - 05/16/10  12:28pm
" Hi Phil,

I can't believe that someone that has the same serious disease. I found your info very interesting. I have looked up the medicine that you are taking. It sounds as if it has as many side effects as the med I am on (celcept). I will be seeing my doctor on the 23 of May. I am going to take all the information that I can find to him. I want to know if It might be an option for me. This past year has been hell for me. Several days a week I am so sick that I am unable to leave the house.
I need to start feeling good again. I am a type A personality, that has become a type called a couch potato.

I would like to know where you are located. I am in Tulsa OK. I am seeing a Rumatogist, because I am taking Celcept. I have not been improving over the past year.
You said that your going to a Hematologist for treatment. I am sure that my doctor would like to speak with your doctor about the treatment you are having.
Could you send me his name and phone number? I think it could make a difference if I was able to try your treatment.

You mentioned a nasal spray of salt solution. Is it over the counter or do I ask the pharmacy to give it to me? I want to make sure I am doing the right thing.
At the present time my nose is completely scabbed. It bleeds every time I touch my nose. It cracks open a lot. My membranes are so swollen at times that it is hard to breath. My mouth has 3 sores, 2 in the roof of my mouth and one starting down my throat. I have noticed I have been coughing and clearing my throat now and then.
I am getting concerned. I also have 3 different areas on my skin that are broke out. This disease is relentless . It never stops.

How long have you had pemphigoid? I got it in 2002.

I wanted to give you my phone number in case you want to talk with me. (918-346-7121) Give me a call. If you don't have free long distance I will be happy to contact you.

Please keep in contact with me. I need the support.

Thanks Susan "
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Reply #3 - 05/17/10  7:15am
" Hi Susan,

Some good news, I have had absolutely no side effects from the Mabthera. It is part of a family of drugs called mono-clonal antibodies and is starting to be used for a variety of auto immune disorders. It was used originally as an anti cancer drug (non-hogkins lymphona) until it's other properties were discovered.

As mentioned before the doctor that handles the Mabthera is a haemotologist however he works (on me) in conjunction with an ENT (Ear nose and throat) surgeon and a dermatologist. The benefit of this is that I am getting the benefit of several specialities working together. The whole thing is managed by the dermatolgist.

I can empathise with how you feel. Before I got this I was an accountant and executive in the world of finance and pretty fit. I had to give work away a couple of years ago and am now doing some part time work and totally unfit. Because the disorder was substantially blocking my throat and causing very reduced breathing, going out the front door to collect the paper was a magor challenge. I was hospitalised several times with breathing difficulties. Now, after the Mabthera, I can breath normally. Susan I cannot tell you how great to it is be able to take a normal breath of fresh air.

The nasal wash is called 'FLO" . It is a small plastic bottle with a conical tip which you fill with warm water and a sachet of powder that comes with the bottle. You place the tip of the bottle at the end of one of your nostrils and slowly squeeze it. The solution and all the nasal muck comes out through your mouth. It takes a a bit of getting used to but give it a try. (Try looking it up on the web).

I seem to recall reading somewhere that Tulsa has a very dry climate. Make sure you have a humidifier in the house and keep it going full boar.

Like you I had a bit of an A type personality, I often wonder if it contributed to getting the disorder. Fortunatelyy I have couple of dogs which provide me with a lot of laughs and companship, I recommend getting one if you don't have one already.

You are most welcome to ring me however I live in Melboure Australia. Try emailing me at phil3101@gmail.com

The medical system in the US is very similar to Australia's. We only recognise the medical training of three countries, the US, England and Canada so I expect that what is available to me is available to you.

Finally, pemphigoid is considered a dermatological disorder so while your reumatologist may have the best will in the world I would consult one in regards to the Mabthera.

Hang in there

Shoot me off an email about how you are going

Phil "
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Reply #4 - 07/26/11  7:20pm
" Hello Susan and Phil, just found this by some miracle. I was recently diagnose with the very same and I am in dire need. My blister bleed and are massive, they swell and of course affect all the membranes, the pain is quite unbearable so are the nerves sensations in my throat. I have a rash all over my knack with this too. I had a scan and a mass was found in the throat I am sure the glands are swelling out of control, the lymph glands are up all over me.

I hope you do not mind me intruding but I am so amazed to see others who go through similar. Please write if you care.

many blessings to you both, Amber. "
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Reply #5 - 07/26/11  7:21pm
" Sorry about the AWFUL writing. I JUST came back from my IVIG treatment and I always have difficulty with the side effects, sorry :) "

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