[williesmom]

Hi All,

Doctor Salzberg, Yvonne and Charlene:

Thank you for all your help during my initiation to OFEV. It’s been just over 3 months since I started. I have learned so much. I am not nauseous anymore!! I do occasionally get diarrhea but if so I take an Imodium and it stops it. I believe that my body needed to adjust to this med.

My doctor was not willing to lower the dose from 150 to 100 after only trying it for a bit over a month.

Yvonne, you told me everyday is a new journey and I totally agree.

I have found that unsweetened almond milk seems to be a great coating for my stomach. I prefer the vanilla flavor and I have it with breakfast and dinner.

I have found that certain foods have a very metal taste, primarily beef. I was never a big beef eater but used to love a good burger. I don’t enjoy burgers at all now. I also have a hard time with tomato sauce, it seems to taste bitter.

I also do take my pills mid meal.

My hair loss has significantly slowed down as well. I did buy the shampoo and conditioner that Charlene recommended. Thank you! I did just have TSH and Free T4 test and have yet to review my before and. after with my pulmonologist.

I know Open Doors doesn’t say that hair loss is not a side effect of OFEV and my pulmonologist has not had other patients with this issue. I did call Boehringer Ingelheim and speak with a pharmacist who told me there was a  blind study done  and .08 % of patients on OFEV showed hair loss and .04% in the placebo group showed hair loss so it really a minimal delta.

Lastly, on hair loss if you read about OFEV in Australia, where a lot of research is being done, hair loss is listed as a side effect.

My biggest complaint is that I am quite tired. I am not a good sleeper and fall asleep very late. I have an appointment with a sleep medicine doctor shortly to try to get some help.

Thank you all  for your help, now that i have made it past 3 months I am much more comfortable with this drug.

But due to COVID-19 and residing in the NY area my pulmonologist still has both my husband and myself in isolation till further notice.  Fortunately, we enjoy being home.

Best to all,

Jane (@williesmom)

[williesmom]

Hi Doctor Salzberg,

Thank you so much for sharing your experience with me. I am going to start to keep a food journal to better understand the reactions to what I have been eating. I have been so concerned with avoiding diarrhea that I stopped eating salad and many veggies and I am wondering if this has contributed to my hair loss. I do need to lose weight so adding a few carbs was not what I wanted to do but was advised to do so to prevent nausea.

Best,

Jane

 

 

[williesmom]

I  have now been on Ofev 150 mg 2x’s a day for a month and 3 days and and considering speaking with my Dr. about my side effects. I have  intermittent diarrhea, nausea and head aches as well as hair loss. Do you know if I ask my doctor to reduce my prescription to 100 mg if these sides effects will lessen?

Also looking for info. on what to eat to reduce the side effects.

Thank you,

Jane

[williesmom]

Charlene,

Thank you for your immediate response, I am impressed with your timing on your reply and appreciate your advise.

I have already ordered the air products and will buy a satin pillow case.

Best,

Jane

 

[williesmom]

Hi everyone,

This is my first post. I have been on Ofev 150 mg 2x’s a day for 2.5 weeks so far and am tolerating it well. I ave to say I has a lot of anxiety about this medication but after a diagnosis of IFP I knew I must take it and I am thrilled that I can tolerate it.

I just googled hair loss and Ofev as I have been noticing a lot of hair loss. I have very thick hair but  am very worried about thinning hair. I just ordered Biotin and the three products that Charlene mentioned.

I had not read in the side effects of OFEV anything about hair loss. This will not stop me from taking OFEV but i am wondering if the hair that falls out grows back? I just don’t know what to expect; is it a lot of hair loss or just more than usual? I also color my hair, is that something I need to stop?  Will I start to lose my hair in clumps?

If anyone has can give me more information or advice I would greatly appreciate it.

Thank you,

Jane