Relapsing polychronitis

[jimbo1605]

My wife has just been advised that her collapsed airway is due to lupus and probably RPC.

Does anyone have this please and can offer any experiences about diagnosis treatment and how it affects you and living with it.

Thank you

[Star13]

I’m really sorry to hear this. RP is quite a rare condition or should I say not many Doctors are very aware of it so your wife is lucky that she has a diagnosis. Your problem now will be getting expert treatment. There has been a lot of research over the past ten years or so and they have even discovered genes which can help with the type which will determine treatment options.

I have an excellent paper which unfortunately is under a paywall but got it when it was offered when it first was released to get exposure but only as a pdf and no link. If you message me I’d be happy to send it to you along with the author and the name of the only expert that I know of in the UK.

[VeeWat]

hi there. If you Google ‘Sabrina Nelson cured relapsing poly chondritis’ there is info about her cure. Also relapsing poly chondritis dot com.

[Orchid9]

I have very recently been diagnosed with Polychondritis (Relapsing) during a joint Rheumatology/Dermatology appointment. I also have a rarer form of Lupus , Myasthenia Gravis and other autoimmune and autoinflammatory conditions. Immunology think there is a genetic link that is unlikely to ever be fully identified as testing is not detailed enough apparently (in England/UK anyway). Polychondritis is the 'last straw' and I am struggling with it. I am understandably concerned.It is very painful , uncomfortable and is already impacting my breathing a bit. My whole body seems more inflamed and especially my ears, face and jaw. My Consultants immediately doubled the immunosuppressants I have been in for 5 years - Mycophenolate Mofitel. As usual, they were in a rush, gave me no information and just said it's probably caused by/linked to my Autoimmune conditions. I have basically been left to 'get on with it' . My GP has no experience of it. Suppose I have no choice but to wait and see what happens and if the doubling of my immunosuppressants helps - in addition to all the other medication I take.

Sorry I can't be of more help at this time. I was surprised to see your post and can really emphasise with your wife. I am interested in the limited responses you have had and hope that more information and support will be forthcoming.

[Numptybrain in reply to Orchid9]

I’m on 2000mg mmm currently but still have to go up another 1000 and dreading it mainly stomach issues, bad pain and heaviness. How are you coping?

Wendy xx

[Orchid9 in reply to Numptybrain]

Hi Numptybrain, I'm used to regular nausea but it's worse now the MMF (Cellcept) has been doubled. Stomach issues a bit worse but it's early days and hopefully things will settle and become more tolerable. Not much we can do I suppose. Had ongoing side effects since starting MMF 5 years ago anyway. Trying not to think about increased risk of infections. Hope you are able to tolerate your further increased dose. Regards x

[Numptybrain in reply to Orchid9]

Thank you, I’ve had a couple of nasty infections, only been on it since august but trying to get used to it.

Good luck

Wendy xx

[FandNnan]

I am a lupus sufferer but I have a friend who was diagnosed with RP almost 2 years ago now.

She advised that you look on Facebook, as well as sites like this, as there are groups for those who have RP and for those who support family or friends with RP.

She has found information and a friendly welcome from people who are going through the same process and learning to live with this rare and unfortunate condition. Hope this helps a little bit.

[BookishVibes]

Hi there,

I'm sorry to hear your wife is having a hard time with her illnesses. I too was diagnosed with Lupus and Relapsing Polychondritis, however my Relapsing Polychondritis has taken a very limited course so far, and is possbily in remission now. I think the Lupus is responsible for the rest of my symptoms.

I would strongly recommend checking out the RP Foundation polychondritis.org/ and also the Facebook support groups. They are very knowledgeable.

Best wishes

BookishVibes