Started Ofev…one week in now

[Mark Koziol]

Hello John, this great is great news. You have a wonderful outlook. I believe it helps us cope. Hopefully you get an opportunity to get listed. You are so correct about being registered. There is a slim window for a person to be evaluated and listed. I am glad you going through this being fairly healthy. Thanks for the update. Mark

[Bob Rawlins]

John,

 

hang in there. I have been on OFEV for over 2 years and it has helped me for sure.

 

I changed from 150mg 2x a day to 100mg 2x a day

 

it has limited

most of the side effects for

me

 

good luck

[Ann Garner]

Thank you Bob.  Spoke with the Dr today and will be reducing dosage next week.

John

[Frank]

Great news John wish you well I started the Ofev about three months ago and just going off it because I have had adverse reaction in my intestines so I’ll let everyone know what goes on with that but I wish you well I know what it’s like take care

[John L]

Thanks Mark….we will see how it unfolds.

[Marianne]

John –

Great to hear that you are doing well with OFEV.  I am still waiting to see if my doctor can get my cost lower to a more reasonable level.  If not, I will wait and when change insurance plans I will start it.  My insurance agent told me that different insurance companies list their own price for retail cost of drugs.  Sometimes they are quite different in cost.  When I change companies I will be able to get the cost down considerably for OFEV.

Marianne

[John L]

Good luck Marianne….keep us posted

[Marianne]

Hi all –

Latest news – My pulmonary doctor reached out to manufacturer of OFEV on my behalf awhile ago.  He has heard nothing so he wrote a prescription for pirfenidone to see if that is less expensive with my medical plan.  Now we will waiting to see what my insurance company decides.  I know if I change plans for 2020 my costs go down in respect to OFEV.  Still expensive but not near as expensive as 2019 cost.  I am planning to participate in a clinical trial this summer at OSU.  There is no way of knowing if I will get the drug or a placebo.  Starting pulmonary rehab tomorrow so we will see how that goes.

Hope all the dads, grand dads, dads to be are having a great day with family and friends.

Marianne

[Charlene]

Thanks for the update @marianne! Here’s hoping that the Esbriet (Pirfenidone) will be less expensive with your plan, as opposed to the Ofev. I know lots of patients who are on it, and believe it has been successful in the slowing (not stopping) of their disease, so goodluck. Keep us posted on what your insurance company says, and best wishes for the OSU trial. I think you’ll find a lot of information beneficial from the pulmonary rehab, I really enjoyed my session of it and hope to do another soon. Goodluck 🙂

Charlene.

[Marianne]

Charlene –

Thanks.  My first pulmonary rehab was earlier today.  I thought it went pretty well.  I was able to keep my oxygen levels in the mid 90’s.  BP was really good before and after the session.  Since it was my first session I only had to go 6 minutes on each machine.  Plus we did stretching exercises with stretchy therapy bands.  There were only 4 people in the class.  One was a man with IPF diagnosed 3 years ago.  He was just listed for lung transplant at Ohio State University in Columbus.  Not sure of his age but I believe he is either late 50’s or maybe early 60’s.  One of the physical therapists told me that usually people are on the transplant list for 30 days.  The therapists told me to talk to my pulmonary doctor about get evaluated early for a transplant before needing one.  Tomorrow we have an education lesson as well as exercise.

Hope everyone had a good day.

Marianne

[Charlene]

Glad to hear this update Marianne, I was hoping the pulmonary rehabilitation went well for you! Sounds like a lot of good information was shared, and way to go for keeping the oxygen sats in the 90s. Wow, OSU must have a lot shorter of a wait list for lung transplantation. Very rare for patients here to be called within 30 days of listing, but that is good news for OSU. Hope the rest of the program goes just as well, and that the educational session tomorrow is helpful. Thanks for sharing this update!

Regards,
Charlene.

[Marianne]

Charlene –

Second day of rehab is finished.  It was a bit more difficult today as I had to exercise longer but I was able to do it and keep my oxygen levels in the 90’s.  The education portion today talked about nutrition.   There were 7 people in the class for the nutrition session.  I am not sure but think many of them might have COPD.  I think they all had lung issues.  I did find out that the man who is listed with OSU has also had some heart issues in the past.  I did not get to talk with him today as he only did the exercise portion so he was finished when we were getting to the exercise part.  We have an arm machine that we use.  Put hands of bars and more arms forward for 4 minutes, then backward for 4 minutes.  I imagine I will have to increase to 5 minutes each direction on Thursday.  Only thing that bothered me was my right side where chest tube was inserted.  It was sore last night and most of the day today.  I am sure the stretching is affecting it a bit.    Did 2 – 6 minute walk tests on my own today and was able to keep the oxygen levels in the 90’s for both tests.  I did some stair climbing right before the first test and the oxygen levels were low 90’s.  Next time they were high 90’s.

Either tomorrow or Friday I am going to go into my office for half of a day.  So far I have been working from home.  My office is 45 minutes to an hour drive from my home.  I am not going to try it on an rehab day yet.

Hope everyone had a good day.

Marianne

[Charlene]

Hi Marianne,

Great to hear from you, thanks for your update on day two of pulmonary rehab!

If your program is structured like mine, the difficulty and length of exercise will increase which often makes it harder for us, but I still find it beneficial. Glad your oxygen levels remain in the 90s, that is good news. It would make sense to me that many of the participants have COPD, this tends to be a lot more common at my transplant centre as well. Did you find the nutritional discussion interesting? I love my nutritionist who is part of my *eventual* lung transplant team. I would imagine that using certain muscles and stretches that you don’t normally use would effect the spot where the chest tube was for sure. Hopefully you get some relief from that once you’re home and done for the day.

Goodluck going back to the office, I hope it goes well for you! I’ll be thinking of you – I remember how hard it was to return to work after my diagnosis, and subsequent medical appointments. I felt completely different somehow, but now my team (most of them anyways) is really supportive and I am grateful for that. I also have accommodations to work from home. During cold and flu season, please be sure to be careful in an office environment if folks are sick around you! More about that in the fall 🙂

Cheers,
Charlene.

[John L]

Good luck to you with the rehab @Marianne…..keep on keeping on

[Marianne]

Hi all –

Third day of rehab finished.  Classroom part of rehab they discussed relaxation techniques.  Doctor has me pre-approved for both OFEV and Esbriet.  Finally got some answers today on prices.  Better than before but still fairly expensive.  I just have to decide which one I prefer.  Right now I am leaning toward OFEV because if I change plans for 2020 I can bring the cost down considerably.  I have a question concerning Hepatic Function Panel (liver function tests).  I realize both drugs require checking the liver function often.  Once before starting the drug and while taking the drug.  My doctor wrote a script to have a liver function panel done every 2 weeks for the first year.  Has anyone else had the liver function panel blood drawn every 2 weeks for 1 year?  He might just being overly cautious.  I have not asked him that question.  I did not even know he had written this order until today when taking with someone from his office.  They suggested I have a blood drawn before ordering the medicine.  This makes sense.

Note to Charlene – The owner of the business where I work is very proactive concerning my health.  I have worked with him for 34 years.  When he or someone at work is sick, I work from home.  Also, if the weather is really cold or lots of snow I work from home.   I only worked in office 2 hours yesterday.  My commute is around 45-60 minutes one way so I was away from home for 4 hours.  I got a later start than I wanted to my day.  Going to try to go in office tomorrow morning and hope to stay from 4 hours.  We will see how I feel.

Marianne

[Charlene]

Hi Mariane,

Glad the rehab days are going okay for you and that you’ve been pre-approved for Ofev and Esbriet. Keep us posted on which one you end up choosing, although I know that isn’t an easy choice. Regarding the liver function testing, I get this done but every two weeks seems a bit excessive to me, although I am not a physician of course so I’d trust their opinion, based on your asking the questions as to frequency of liver function tests. I just can’t imagine it changing so rapidly within two weeks, but maybe one drugs has more impact than another. Definitely ask the question of frequency if you think of it…

 

I am so glad to hear your employer is proactive in caring for your health. I am pretty lucky that way too, and it makes the world of difference, doesn’t it? Keep working at increasing the office hours slowly, good for you. Were you able to do the 4 hours on the second day?

Charlene.

[Marianne]

Update –

Got an email today from my doctor.  I only need to have liver function panel blood drawn every 2 weeks for the next 2 months.  Still not sure which IPF drug I will end up taking.  I spent time on phone today trying to get some answers from insurance concerning pricing of Ofev and Esbriet.  Basically, they could nor or would not give me a price.  Now I have a question into my pulmonary doctor to see which drug he would subscribe for his own wife or mother and why he would pick that drug over the other.  This was suggested by a good friend whose mother suffered with PF as well as congestive heart failure.  This is a question she often asked her mother’s doctors.  So it will be interesting to see how he will answer that question.

Did anyone else in the US have problems getting their insurance company or specialty pharmacy to give them answers as to the cost of either Ofev or Esbriet?  I am on Medicare A, B, Supplemental Insurance and Part D drug prescription coverage.  From what I can figure my Part D drug prescription coverage is not much help for a Tier 5 drug.

At this point, it looks like I will order it through my doctor.  It is still very expensive but at least they are giving me a price per month.  Everyone else will only give me an “estimate” as to the price for the 1st and 2nd month.

Marianne

[Marianne]

Liver function panel is back before starting drug treatment.  All liver functions look good to me.   My doctors automatically release results of tests to me.  I haven’t yet heard back from my doctor as to which drug he would use to treat a member of his own family.

Heading out this morning for a massage.  I so need that massage after a week of hassling with insurance company and specialty pharmacy.  This is going to be a “treat myself day”.  Might go to yoga too but not sure if I can do all that stretching yet.  But definitely signing up for yoga for July.  With Silver Sneakers (when on Medicare and available with some insurance companies in the US) I can go to some exercise classes free.  I plan to use it to take yoga classes with some of my friends.  I have attended once before lung biopsy and I enjoyed the class.  The teacher is excellent.  It is held at a local retirement center so I am not the oldest person there!!

Happy weekend.

Marianne

 

 

 

[Charlene]

Hi @marianne,

Thanks for providing us with this update, and I’m really glad to hear you’re being such a strong advocate for your healthcare needs by asking your doctors the tough questions. It sounds like he/she is very responsive, which is great. Do let us know which of the anti-fibrotic drugs they recommend for you, as there are folks on the forums who are on both (not together, but either Ofev or Esbriet) that can likely provide you some insight. Sorry I don’t have much to share regarding the co-pay, as I live outside of the US but some members have shared ways to get the medications a little cheaper. I hope these options work for you too! 🙂

Glad to hear your liver function panel came back without any significant problems, excellent. I am also glad to hear you’re treating yourself to a massage and a “taking care of you day”. These days are so important, and are something I’ve started implementing for myself as well. I have a massage on Tuesday! Enjoy your day, and I hope the weather is as beautiful where you are as it is here today.

Kind regards,
Charlene.

[John L]

Healthwell Foundation  # 800-675-8416    This place picked up my co-pay for the Ofev.   They have funds to assist with meds.  I also have Medicare & BC&BS as a Secondary Insurance.  I didn’t think I would qualify & they approved me to pay the co-payments.   Worth a shot….

[Charlene]

Hi John,

Thanks for sharing this! It is actually on my “running list” of topics to write about/share on the forums, but I am glad you are able to share the personal experience of dealing with Healthwell. I am so glad they picked up your co-pay for the Ofev, I am very happy for you. Thanks again for letting others know about this resource.

Kind regards,
Charlene.

[John L]

Good morning….Being relatively new to this, regarding blood work to check liver functions, I can only share my experience thus far.   My guess is each Doctor might have a slight different approach monitoring your blood.  My Pulmonologist had me take a blood test prior to even starting the Ofev.  Then wants me to take 1 test per month for 6 months, then, 1 every 3 months after that….I will be taking my first post blood test the end of this month….They do need to monitor how the Ofev is effecting the liver closely at first to see if your liver can tolerate it……I have read where some people had to stop taking the Ofev due to bad liver functions after being on it….fingers crossed!   Hope this helps

[John L]

I know there are other Agencies besides Healthwell Foundation that offer support too!  Healthwell was suggested to me by Open Doors & by my Specialty Pharmacy….

[Charlene]

Hi John, good morning,

My experience sounds the same as yours re: doing blood tests, including liver checks before starting the Ofev and then while on it as well. Glad your doctor is being thorough, as the liver can definitely be effected by our anti-fibrotic medications. Goodluck with the test at the end of this month, hope your body is tolerating the Ofev okay! Keep us posted.

Charlene.

[John L]

Thanks Charlene….still doing ok with the Ofev & side effects are minimal.  Choosing the right food to eat has been somewhat of an adjustment & a learning experience for me by trial & error.  When something upsets my stomach, I make a note not to eat that again with the meds….only once with eating fried chicken it left me feeling some stomach discomfort but overall hasn’t been bad.  They say greasy & spicy food is bad with Ofev!   No diarrhea as of yet!  Will keep you posted with my post blood-work……..more will be revealed

[Charlene]

Hi John,

Glad to hear that so far the effects of the Ofev are minimal for you. You’re very wise in tracking or making note of things that upset your stomach; hopefully this will make eating comfortably a bit easier! Hoping to hear good news from the bloodwork and that the Ofev continues to be manageable for you.

Regards,
Charlene.

[Marianne]

John L and Charlene –

Thanks.  By looking at Healthwell online I do not qualify for help from them as I am still working.  I can’t remember if I actually called them but pretty sure I did.  I will check with them again.  Are you retired or do you still have a full or part-time job?  I have Medicare as well as Supplemental Coverage and Part D Prescription Drug plan.  I just switched my supplemental coverage to save money and to add the Silver Sneakers option.  I found an exercise place that I can take classes free of charge with Silver Sneakers.  If I want to take water exercise classes or use the pool I pay just $10 per month.  Stopped to day to sign up for July classes but I don’t have my Silver Sneakers card yet.

The massage was wonderful.  I took flower to give to massage guy plus a PF jelly bracelet.  He will wear it.  He is one of the owners and is excellent.  They had a special so I saved money by using their summer special too.  Gorgeous and sunny in Columbus, OH today.  About time – as it has been rainy all week.

Marianne

[Marianne]

Charlene –

Yes I was able to work 4 hours yesterday.  Scheduled a massage for July and another one for August.

Marianne

[Charlene]

Hi @marianne,

Sorry for keeping this short, I am just about to head to bed as I am very tired. However, I wanted to say kudos to you for working 4 hours the other day! How did it go in terms of how you felt in the evening? Were you exhausted? Good for you as well for booking a massage in the next few months! I have one tomorrow and am looking forward to it. They often help me sleep better too, in addition to relaxation, which is always a bonus for me.

Take care,
Charlene.

[John L]

Marianne…Yes, I am retired.  I am on Medicare, & BC & BS as a secondary, also get a pension & I was approved.  I was surprised because you have to tell them your complete income when applying.  My co-pay was what they covered.  It’s worth a shot to call them & speak to one of their representatives……I know there are other places too that offer support?  Someone on here should know the names & contact numbers….You can inquire on a forum to get the info you may need….good luck to you!

[Marianne]

John L. – Thanks for your reply.  I will check again with the various foundations but all I have talked to have turned me down because income is above what they consider.  One foundation does not count 1 house and 1 car but adds in your retirement accounts (or the portion you are withdrawing monthly) to your income.  I recently applied for social security and do not yet know the amount I will get monthly.  My co-pay is very high.  I have talked to Healthwell Foundation, Open Doors, RCC Foundation, my Specialty Pharmacy (they told me to call SS for extra help), BI cares, PAN, Patient Services, Inc.  Doctor also wrote prescription for Esbriet to see if I could get some funding.  Right now it looks like if I continue to work full time, my best price for either medication is through OSU Outpatient Pharmacy – it is still very high.  Or I can work part-time for less money or retire.  These seems to be my options.

Marianne

[Marianne]

Charlene –

It went pretty well working 4 hours in the office.  At today’s rehab we had 2 patients graduate.  They are finished with rehab and both were able to increase their 6 minute walk distances by 30% so that was great news.  I am working tomorrow in the office, then I have a longer rehab session in the afternoon.  I will let you know how I feel after both of those in the same day.  Our rehab class has grown larger.  Pretty sure there are only 2 of us that have IPF in the class.  Got an email from my doctor replying to me that he thought Ofev was the correct medication for me.  That’s all I know right now.  Hope you had a good sleep.  I am heading there soon.

 

Marianne

[Charlene]

Hi Marianne,

So glad to hear your time spent in the office went okay – kudos to you for doing 4 hours! Do you think you’ll continue this semi-regularly, or a couple days per week or primarily continue to work from home?

That is wonderful news about the pulmonary rehab graduates, and their ability to increase their 6MWTs by 30%. It sure gives other patients participating some hope doesn’t it? Hope your longer rehab appointment and work in the same day isn’t too much. I find it a task in itself learning our “limits” and what we can/cannot do each day. I am on Ofev so if you have any questions, definitely feel free to reach out or check the Ofev thread in the forums, lots of helpful information there. Talk to you soon!

Charlene.

[Marianne]

Hi Charlene –

I will probably continue to work from home part of the time during pulmonary rehab.  We have a very small office.  One of the guys works remotely from home the majority of time.  The owner travels alot for clients and vacation.  When he is out of town, he prefers that I am in the office.  I assume I will try to return to work full time after I am finished with rehab.  It depends how I feel.  I am not as tired as I was a couple of weeks ago.  It also depends when I go on the medicine how I feel.  My doctor said he thought that Ofev was the best choice for me mainly because I like the sunshine and love to travel to FL to visit family and friends.

A guy in my rehab class got was placed on the transplant list with Ohio State University (OSU) this week.  Hopefully, he won’t have a very long wait time.  One of the nurses in rehab told me that OSU often has a quick turnaround time on the transplant list.  I asked him which medicine he was on.  The answer was neither.  Ofev gave him too many side effects and Esbriet did fine for 6 months until he got a horrible sunburn and ended up in the hospital.  He went off Esbriet for a couple of months, then tried it again, again he had side effects.  So he is not currently on any anti-fibrotic medicine.  He has in the past had a heart transplant.  He is on oxygen 24/7.  He was diagnosed 3 years ago.

Yesterday’s rehab was great.  Oxygen levels were 95 before exercise and 96 after.  Yeah!  Blood pressure was great too.  No rehab today so at work for 4-5 hours, then home.

Hope everyone has a great day.  Sun is out and close to 90 degrees today in Columbus, Oh.

Marianne