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I have read on a few websites under “symptoms of PF” night sweats. Not all as i did not see it till recently. Interesting!

Thank you Nan, you have no idea how your answer has helped me.   I was thinking it was just me and was having to battle foreign ideas alone but your answer has helped me see that I am not that inflexible and that it does happen to others. Being alone in a foreign country with a deadly and rare disease  is not easy. Luckily I am made of fairly st…[Read more]

wow that is terrible. I had an oncologist d/c me because I refused to continue tamoxifen d/t the side effects and no quality of life. My family doctor was pretty discussed with the oncologist. Terrible how they make us feel eh?

Hi Nan My cramps are mostly on my right side too, hate the ones in the big back muscle leaves me breathless, though I do get all over chest ones, few in my legs but my toes cramp often, right side again one seems permanently in cramp !!!

Yep the professor really frustrates me, not supposed to question some one with such standing !!!  I will…[Read more]

Hi Susan, I was thinking of you at 3 a.m. when i woke up with muscle cramps in my chest. They use to think that cramps/spasms/Charlie horses where because of dehydration, they no longer think that. They really don’t know the cause but magnesium has been implicated. The problem with magnesium is we don’t absorb it well that is why it is used as a…[Read more]

Hi Susan,

Ah, sorry to hear that! Sounds like your process there is a bit different than here. You’re absolutely right – treating you for something you don’t have is not only ineffective, but potentially dangerous as well. Hopefully you can tell the physician that when you see him, and not be labelled as a difficult patient, but one who is…[Read more]

Hi Charlene   Wish could skip the professor but to get to the one I want I have to be released by the professor first so flaunting French protocol and not cowtowing to him might just work, I want him to wash his hands of me so I can go to her as he cannot just leave me high and dry. Would be labelled as a difficult patient, I’m not it is just t…[Read more]

Hi Susan,

Thanks for writing me back, and hope you’re having a good weekend.

Ah yes, the vitamin D dose can be a lot but it sounds like many of us are on a high IU amount of it. My prescription is 50,000 IUs! I’m glad you’re seeing the doctor in early February, though sorry you don’t have a lot of confidence in him. I sometimes think not…[Read more]

Hi Marsha,

So nice to hear from you as always, thanks so much for writing 🙂

I agree, this article was very interesting and sleep is something that (for the most part) we can control, or try our best to anyways. I will be trying to get a consistent 7hour sleep every night as well. I’ve been sleeping a lot as I continue to recover too, which is a…[Read more]

Hi Charlene,

Already take prescribed dose 10,000 ???? per month of Vit D as I am not very good at manufacturing it.

Got an appointment with the professor on the 3rd of Feb but I am fast losing confidence in him as he never

listens and treats me as if I know nothing, tis true though that the French never ever question their doctors or any one…[Read more]

Hi Susan,

So sorry to hear of this experience, that must have been so scary (not to mention uncomfortable)! I don’t tend to have any chest cramping unless I am sick, but it isn’t unheard of for patients to have muscle spasms if they have IPF, especially if their chronic cough is bad. Make sure you’re getting lots of water, as this can help with…[Read more]

Hi Anja,

Thank you so much for writing, and I am glad you’re part of our forums community. That said, sorry you’re also dealing with this cruel disease as a young adult! We need to stick together to start debunking the myth that IPF affects only those who are older; it is clearly not true. I’m so glad my columns are helping you, if there is ever…[Read more]

@maynard – hope you are well. From what I gathered through read the forum, the Serrapeptase dose that most seem to on is around 120,000 SPU.