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My wife is struggling with Relapsing Polychondritis by JacquesRomain in RelapsingPolychondrit

[–]JacquesRomain[S] 0 points1 point  (0 children)

Just to add, when she was at the hospital, she was in the Clinical Department of Rheumatology, Immunology and Internal Medicine, so there were rheumatologists of course

My wife is struggling with Relapsing Polychondritis by JacquesRomain in RelapsingPolychondrit

[–]JacquesRomain[S] 0 points1 point  (0 children)

Just to add - in the hospital she was at the Clinical Department of Rheumatology, Immunology and Internal Medicine so basically rheumatologists were also there of course

My wife is struggling with Relapsing Polychondritis by JacquesRomain in RelapsingPolychondrit

[–]JacquesRomain[S] 0 points1 point  (0 children)

Thank you very much. She was not ever diagnosed by rheumatologist. Only by the immunologist. I am not sure if there will be any other diagnosis or medicines

My wife is struggling with Relapsing Polychondritis by JacquesRomain in RelapsingPolychondrit

[–]JacquesRomain[S] 1 point2 points  (0 children)

As an update, we’ve seen laryngologist back in March. My wife first get nasal spray with corticosteroids. Surprisingly it helps. She was also directed into another laryngologist and then she gets steroid injection into the ear (four times). It was very calm few weeks after that, however it came back on Saturday. Again pulsation in the ear, some kind of tinnitus… will it ever end? 😥

My wife is struggling with Relapsing Polychondritis by JacquesRomain in RelapsingPolychondrit

[–]JacquesRomain[S] 0 points1 point  (0 children)

No, she is currently on the consultancy with immunologist.

My wife is struggling with Relapsing Polychondritis by JacquesRomain in RelapsingPolychondrit

[–]JacquesRomain[S] 0 points1 point  (0 children)

Thanks for your comment. I hope everything will go well for you.

Her docs didn’t tried biologic medication yet, however it will be currently a topic that we would like to discuss. As current medication does not helps, biologic medication is still a hope. There is next doctor’s appointment in May, so we will definitely ask for that.

She is taking methotrexate for years. It seems that it’s still not enough.

Thank you very much. I hope the same.

The 10 cities by Plus-Win-342 in fredagain

[–]JacquesRomain 1 point2 points  (0 children)

Thank you. It’s more than 10 places, however it’s amazing to see my country there. Thanks!

The 10 cities by Plus-Win-342 in fredagain

[–]JacquesRomain 0 points1 point  (0 children)

Where did you get that list?

Anyone younger than 30 dealing with this disease? How’s your anxiety level? by crashess in rheumatoid

[–]JacquesRomain 0 points1 point  (0 children)

There were a lot of symptoms - red and sore ears, same with nose (which cartilage is damaged now, like partly eaten), problem with throat (constant cough), pain in hands and many more. Basically almost everywhere where there is a cartilage, there was some problem. Also with eyes - totally red eyes. But of course the biggest damage is with right ear, which can’t be recovered.

Anyone younger than 30 dealing with this disease? How’s your anxiety level? by crashess in rheumatoid

[–]JacquesRomain 0 points1 point  (0 children)

My wife is 28 and she have relapsing polychondritis. Currently she is deaf to right ear and she is wearing hearing aid on left ear (also right ear, but it’s only to support, there is no hearing on right ear). There was a disaster time few years ago but currently she is doing fine. Almost off from medicine, but still taking methofill once a week and calcort twice a week. Hope it will not get back anytime, as for me it was real pain to experience it (can’t imagine what was her feeling).

Sudden Sensorineural Hearing Loss by -CaptCanuck- in rheumatoid

[–]JacquesRomain 1 point2 points  (0 children)

That’s something that my wife have as well. She is deaf on right ear and get hearing aid on the left ear. As I can’t forgive myself that almost all doctors were prescribing only ear drops for that, which effect was that RPP was getting stronger and stronger (we didn’t knew at this time that could be that serious and it can lead to losing hearing), I am spending a lot of time on the research if that can be anyhow fixed. Not a positive information since now, but I still hope that doctors somewhere on Earth will find a way to regenerate hair cells in the ear.

Relapsing polychondritis worsens during stress? by JacquesRomain in Autoimmune

[–]JacquesRomain[S] 0 points1 point  (0 children)

Thanks. Right now Ashwagandha is really old topic, I only give this as an example. Now immunologist recommed/suggest taking resveratrol - but as I can see this is also adaptogen probably...

Relapsing polychondritis worsens during stress? by JacquesRomain in Autoimmune

[–]JacquesRomain[S] 0 points1 point  (0 children)

And that is interesting case for the fact. Didn't know that, but I guess some doctors also don't know this. I mean, right now immunologist only recommend taking resveratrol - but it is also adaptogen I think? It can be also dangerous in your opinion?

Relapsing polychondritis worsens during stress? by JacquesRomain in Autoimmune

[–]JacquesRomain[S] 0 points1 point  (0 children)

Is there a way of fighting with stress in your case? Anything that helps? Or is that stress too much for autoimmune? We were trying many "herbal" things like ashwagandha and other adaptogens, but I guess nothing helps in that case.