• Ofev and Plaquenil

    Posted by pamela on February 22, 2023 at 10:41 pm

    Question for this group, does anyone take both Ofev along with Plaquenil for ILD?  My fibrosis is caused by scleroderma, I was diagnosed in July of 2021, 47 years old.

    I was previously on Cellcept and had anger, anxiety, insomnia, so my doctor switched my anti inflammatory medication to Plaquenil.   I would like to add an anti fibrotic as I’ve read many have had good results in slowing down scarring progression with Ofev, would love to hear from anyone who has experience taking Plaquenil along with Ofev… thanks in advance for your help!

    jeffrey-pepper replied 1 year, 1 month ago 8 Members · 12 Replies
  • 12 Replies
  • john-sharman

    Member
    February 23, 2023 at 2:40 pm

    <p style=”text-align: center;”>I too have Scleroderma based ILD.  I was diagnosed 4 years ago with ILD and 7 years ago with Limited Scleroderma.  I have been on Hydroxychloroquine for 6 years, CellCept for 4 and OFEV for 2. Due to a rapid decline in total lung capacity, I recently went off the CellCept and Hydroxychloroquine and started on Rituxamab Infusion therapy.  Time will tell if it slows my lung loss down because I have very little left.  I am 71 years old.</p>

    • pamela

      Member
      February 25, 2023 at 1:05 am

      Hello John thanks for the reply.  I’ve had Scleroderma for 14 years, diagnosed with ILD 1.5 years, but my doctor says I’ve had ILD most likely as long as I’ve had Scleroderma.

      You’ve taught me something today- that you can take Hydroxychloroquine, Cellcept and OFEV together, I did not know that was possible.  Sorry to hear about the lung decline in total lung capacity.   My DLCO went down over the last year and it definitely made me stop and reevaluate my life.  I was also unaware of  Rituxamab as a medication, so you taught me two things today, thank you John for the insight.

  • susanlee

    Member
    February 23, 2023 at 4:44 pm

    I’m using cellcept, plaquneil, ofev and tyvaso, and on pantaprozole, bactrim, among other meds and supplements. My lung dr told me on 2/21/23 that I’ve remained relatively stable for 3 years. I was diagnosed with ild in 2009, later connective tissue disease and scleroderma. I’m on oxygen 24/7, 6 liters on exertion. I go to UTSW, Dallas. So yes, taking Ofev has helped, been on it for about 3 years, and cellcept has helped. I’m 70 and under palliative care. Taking it one day at a time, prayers, faith, lots of support and resources. Rehab too. So much to be grateful for,

    Susan

    • pamela

      Member
      February 25, 2023 at 1:49 am

      Hi Susan nice to meet you.  You are the first person I know who has had ILD for a as long as you have, 14 years.   Ofev sounds like it has kept you stable for a few years, so I appreciate the feedback.
      I just got engaged to an amazing person and this is another big motivator in my wanting to find the right mix of medication, many things to be grateful for sure.  I am grateful to find others on this journey with Scleroderma- ILD.  I don’t know anyone with this and no one in my family has it, so I’ve been going at this on my own, nice to know I’m not alone in this.  Thank you for responding to my question.

  • roger-cummins

    Member
    February 24, 2023 at 11:53 am

    Like John Scharman, I too have ILD and Limited Scl.  I was diagnosed in 2019, put on Cellcept and stable for about a year, then FVC dropped to 52 in about 6 mos. and HRCTS showed additional progression. Immediately went on both Ofev (max dose) and Rituxan infusions.  Went on oxy 2L 24/7 Jan. of ’22.  After being on Ofev/Rituxan for about a year without noticing any difference, I started to notice improvements in my everyday “lung function”, meaning I didn’t cough nearly as much, everyone said I sounded much better, and then I noticed I could stay off of Oxy during the day as long as I was just slowly moving around the house.  After my lung tests at Baylor-Dallas a couple of months ago, my FVC and FEV1 were up about 6%, but my DLCO had increased from 60 to 86.  My lung doctor was extremely excited.  The DLCO improvement is probably why the lungs are “working” better lately.  She pretty much had no answer for why the improvement.  I understand that things can, and will change, but just know that improvement (even if not permanent) is possible.

    • pamela

      Member
      February 27, 2023 at 9:45 pm

      Hi Roger, that’s pretty incredible that your DLCO increased so much! Mine went down 4% in the last year and a half, I’m still above 70% , but it’s a little unnerving to think about. I started Ofev last week, hoping for similar results as yours.  In regards to hearing about anyone else with Scleroderma ILD, I feel as if I’ve hit the jackpot here finding three other people with this. I have met no one with this type of ILD in real life or virtually, so it’s nice to know you guys exist, very nice to make everyone’s acquaintance!  Thanks Charlene for the information, will have to research this.
      <div>
      <div></div>
      <div>I don’t know of a group specific to Scleroderma ILD but I can share my symptoms and experience.  I used to run 7 miles a day, 5-6 days a week, now I run/walk on average 4 or 5 miles and get winded a lot.  I also have Sjogren’s disease, Reynaud’s, and as of late I have a lot of mucus buildup, that is new.  I lay down at night I don’t feel like I get very good oxygen intake even though I sleep upright.  I take Mucinex sometimes per my doctor’s suggestion to help with mucus.   Question (for all), does anyone walk around sometimes feeling heady or like they are loopy or not completely with it from a lack of air?  If so is that a normal feeling to have with ILD?</div>
      <div></div>
      <div><span style=”font-family: -apple-system-body;”>As of late I also have found a number of cysts, one on my thyroid, one on my gallbladder, and recently found an enlarged parodic gland under my ear and above my jawline that thankfully was not cancer. This all happened in the last year and a half and it coincided with when I began menopause, which is also when I began to feel my shortness of breath.  I took myself in to see a pulmonologist.  He didn’t believe there was anything wrong with me at first because my spirometry was in a normal range and I look athletic, I had to convince him to do an examination.  He heard rails at the base of my lungs and soon after got the diagnosis.</span></div>
      <div><span style=”font-family: -apple-system-body;”> </span></div>
      <div><span style=”font-family: -apple-system-body;”>I manage ok, not on oxygen, I am more anxious than anything, but I still wake up every day and am grateful for life.  I just got engaged a few months back to a great guy who knows all about what is going on with my ILD, so yet another reason to want to find answers and the right medications to live as long and as healthy as I can for as long as possible.  Thanks everyone for your knowledge, I very much appreciate it! </span></div>
      <div></div>
      </div>

  • roger-cummins

    Member
    February 25, 2023 at 11:09 am

    To all:  I’m a member of PF Warriors in Dallas and I think Susan is as well, and it’s awesome, but it’s not specific to Ssc/ILD patients.  Does anyone know of a group or forum specifically for people like us? It would be EXTREMELY helpful to communicate with people with our specific diseases.

  • Charlene Marshall

    Member
    February 27, 2023 at 7:44 am

    Hi Roger,

    Does your local transplant hospital (or the nearest one) have a support group, either virtual or in-person? Sometimes they have disease-specific groups or even age-specific which I find a lot more relevant than some of the generic PF groups online. Just a thought if you haven’t checked there 🙂
    Char.

    • roger-cummins

      Member
      February 27, 2023 at 9:30 am

      Hi Charlene.  Good idea.  I’ll check that out.  Thanks for the reaching out.

  • christine-vasar

    Member
    February 28, 2023 at 4:52 pm

    I was diagnosed with ILD with Mixed Connective Tissue Disease  in 2015 and put on CellCept, Plaquenil, Bactrim and several others.  As soon as Ofev was offered to autoimmune patients I began at the at the maximum dosage.  So far for the most part I’m holding steady – though my DLCO goes up and down with each test.  Generally in the low to mid 30’s .  I need oxygen only with exertion.  I do attend pulmonary rehab daily which I believe plays a big role in staying relatively steady.

  • srinivasan-cheema

    Member
    March 1, 2023 at 12:05 am

    I am new to this group from India . When I was gasping for breath in Chicago with oxygen level dropping to 59  and admitted in Hospital for 10 days . With all the tests the team of doctors could not come to a conclusion . I was under Oxygen for 24 hours in the hospital and traveled with Inogen 5 by road from Chicago to McLean with a stopover in a Hotel in Cleveland . For 4 weeks at home , I was using oxygen for 24hours , slowly reduced the hours  and after 8 weeks completely off from Oxygen . After returning to India (Bangalore ) checked with a Pulmonalogist  and a HRCT was taken .

    I am declared as suffering from IPF and Doc suggested me to take OFV 150 mg for a month and then have the liver Function test . I have completed 15 days and so far no adverse side effects .

    I am off from my favorite single Malt ( weekends ) for the past two months .

    My question to the seniors in this Forum , how long I should take Ofv ? Have I to be completely off from my week end pleasure of two pegs of single Malt ?

    I am doing my 10,000 steps walk , one hour yoga of course with reduced speed than normal . Also Pranayama for  30 minutes .

    I do not mind about seeing the end of the road in my life , but till I am there , I want to enjoy my life

  • jeffrey-pepper

    Member
    March 2, 2023 at 3:45 pm

    I have been on Plaquenil since about 1998 for rheumatoid arthritis and started Ofev just about a year ago, I take 200 mg of Plaquenil twice a day and have been since starting. I was started on Ofev  150 twice a day in March of last year after a diagnosis of IPF in January, 2022 after a lung biopsy, which followed a period of hospitalization in October, 2021 with interstitial lung disease. I was hospitalized again in February, 2022 for the same reason,  Since starting on it, I had a lot of stomach issues from the Ofev and the dosage was reduced to 150 once a day last June and remains there. I take Protonix 3400 mg for the stomach issues at present and that keeps stomach issues mostly at bay. I also have some loss of appetite, resulting in, so far, a 14 pound weight loss (which I can’t say I mind). My lung function has decreased slowly over the past year. I remain on 4 liters/min of oxygen 24/7, having increased from 2 liters in January of last year. I also have a monthly infusion of a biological for my RA.

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