Home Forums General Discussion Does Doxycycline have any effect on pulmonary fibrosis?

This topic contains 14 replies, has 5 voices, and was last updated by  Oksana 1 year, 11 months ago.

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  • #457314
    lolly2pops
    Participant

    I have been diagnosed with diffuse systematic scleroderma early this year with pulmonary fibrosis and I have been on doxy 100mg twice a day for two and a half month. My symptoms began in 2006 and it took nine years for me to get a diagnosis. I am also on immunosuppressants Imuran, chloroquine sulphate, prednisone, vit d and calcium. I just want to find out about the role of doxy on lung fibrosis if there is any. If not, what antibiotic should i be taking except minocycline as i can not afford it. Also if doxy works on lung fibrosis is there any antibiotic i can alternate it with for even better results?

    Dx: systemic sclerosis in April 2016 with lung involvement (UiP), raynauds, sausage fingers, and overall swelling, high skin score, general body weakness, fatigue and weight loss . Symptoms started in 2005 and took 10 yrs to get diagnosed. Current meds: 100mg minocycline X2 p/d, milk thistle, turmeryne, mega C 1000 X2 p/d, calcium channel blocker, chloroquine 200mg p/d and probiotics. Tried NAC but this caused stomach pain and discomfort. Other meds used: imuran (oct 2016-dec2017), doxycycline and cellcept

    #457325
    Maz
    Keymaster

    Hi lolly2pops,

    Re: doxy and lung fibrosis, the answer is yes! You can search studies by going to http://www.pubmed.com and using key words in the search engine, like, “doxycycline minocycline lung fibrosis.” Here is one:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2862512/

    I’d also suggest that you research the effects of glutathione and systemic enzymes on lung fibrosis. NAC is an over the counter supplement that is a precursor to glutathione that many use to protect the liver and lungs here. Systemic enzymes taken on an empty stomach help to break up scar tissue and can also reduce sticky blood and help with Raynaud’s symptoms.

    As reflux can be a leading cause of lung fibrosis, taking measures to sleep in an elevated position can be helpful, as well as ensuring that the thyroid is functioning normally. Many rheumatics have an overlap with thyroid autoimmunity and hypothyroidism can result in low gastrin levels in the stomach and low stomach acid. Poorly digested goods can sit in the stomach and reflux up, too.

    Are you taking adequate probiotics spaced 2 hours away from your doxy doses? Also, keeping calcium spaced several hours away from doxy will allow for max absorption. It will negate doxy otherwise, binding to it in the gut. Any reason you are taking calcium? Optimally, it’s taken with Vit D3, Vit K2 and magnesium in a 2:1 ratio for best absorption. Unopposed calcium has been tied to other issues, if not properly absorbed (arterial plaque, kidney and gall sones, calcinosis, etc).

    Generic minocycline is affordable. Did you mean that the original brand was too cost prohibitive? Minocycline is generally preferred by SDers as it has superior tissue penetration. If you can’t use mino, then antibiotics that can complement doxy include ones like biaxin (clarithromycin) or Zithromax (azithromycin). These are called “macrolides” and gave similar bacteriostatic properties as tetracyclines, targeting intracellular microbes. They have similar actions to clindamycin, which is the antibiotic that is most often given by IV.

    Just some ideas for you to research and hope something might help!

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #457330
    Lynne G.SD
    Participant

    Hi Lollipops;
    Over the years I have collected a lot of info mostly because I was a scientist that got SD.Here is the best info I have on hand and should keep you reading for a few days.I did have early lung fibrosis and it has been gone for a long time.I have a lot of info on supplements but it is scattered all over the place and would take a few days to sort out.The ones I would recomends are NAC,Proteolytic enzymes,Milk thistle and to thin our sticky bllod caused be red blood cell aggrgation are Inositol IP-6 and Nattokinase as these really help with Raynauds.

    First let me explain that there are no double blind,placebo controles trials.There are only studies and no one will likely ever do any trials(maybe in Europe) with an old,non profitable medicine.

    Mino works in many ways but I will try to keep this as simple as possible.

    What are Interlukins? SDers are mostly concerned with 1 and 6

    The new meds being trialed right now are Resunab,PMR4050(I think) and Prm 151 are all trying to stop the ILand TGF,the cause of fibrosis.Mino will take longer but does the same job and a lot cheaper

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0060817

    https://en.wikipedia.org/wiki/Interleukin

    Mino and Interlukin

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0060817

    http://www.ncbi.nlm.nih.gov/pubmed/23470532

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3307860/

    http://jid.oxfordjournals.org/content/199/9/1379.full

    https://en.wikipedia.org/wiki/Interleukin_6

    http://www.ncbi.nlm.nih.gov/pubmed/22595153

    https://www.hindawi.com/journals/mi/2015/329418/

    Other Uses

    https://marshallprotocol.com/forum39/14650.html
    http://www.ncbi.nlm.nih.gov/pubmed/23274564…cancer

    http://www.emedexpert.com/facts/minocycline-facts.shtml

    http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/minocycline/

    https://clinicaltrials.gov/ct2/show/NCT00203697….for lung scaring

    http://www.ncbi.nlm.nih.gov/pubmed/16443056

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC23976/

    http://www.ncbi.nlm.nih.gov/pubmed/1836318

    http://www.ncbi.nlm.nih.gov/pubmed/15270845…micoplasma
    http://cmr.asm.org/content/23/3/590.full….must read

    http://www.cpnhelp.org/david_wheldon_comments_on…must read

    http://link.springer.com/article/10.1007/s10787-011-0077-5

    https://www.ncbi.nlm.nih.gov/pubmed/23858099

    http://link.springer.com/article/10.1007/s10787-011-0077-5

    https://www.sciencedaily.com/releases/2009/12/091218151327.htm

    http://journal.frontiersin.org/article/10.3389/fpsyt.2010.00136/full

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651660/

    http://mpkb.org/home/pathogenesis/microbiota/biofilm….really intersting

    http://www.betterhealthguy.com/yu-conference

    make sure to read RELATED STORIES on Science daily

    https://www.sciencedaily.com/releases/2009/12/091218151327.htm

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548009/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2862512/

    http://jid.oxfordjournals.org/content/201/8/1115.full

    TRANSFER GROWTH FACTOR

    What is TGF

    https://en.wikipedia.org/wiki/TGF_beta_1

    https://www.ncbi.nlm.nih.gov/pubmed/14978736

    #457331
    Oksana
    Participant

    God bless you, Lynne, for all this info for everyone! A couple of days ago I found out the pricing of Resunab was 100 000 dollars per patient per year!! LOL, should all sclero patients be millionaires or what?))) AP is the wisest (although the longest) choice that could ever be imagined.

    #457337
    Lynne G.SD
    Participant

    HOLY SHIT!I have a feeling that those who have good insurance now will not have it for too long

    #457343
    greypilgrim256
    Participant

    Sorry, but I have to set the record straight on Osaka’s statement that Resunab will cost 100k per year. Not sure if you are purposely spreading that information or what, but there has been NO pricing whatsoever by Corbus for Resunab’s cost. The drug just got through Phase II of clinical trials for scleroderma, so there is no way of knowing what the cost of the drug will be. Corbus has already said in their conference calls that they have no pricing data at this time, so unless you somehow work for the company or are willing to state a reliable source, please don’t spread false information.

    #457345
    Maz
    Keymaster

    Greypilgrim, Oksana does not live in the US, but in eastern Europe. Perhaps she has info on projected costs of Resunab in the Euro market?

    Do you have renewed interest in the AP treatment for SD? If so, we are happy to offer resources and support. There is no reason why AP can’t be combined with some of the other SD treatments to reap its immune-modulatory effects.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #457346
    greypilgrim256
    Participant

    The drug is not being tried in Europe. Resunab is currently only under clinical trial in the US and only at scleroderma centers in University facilities, and even here it only recently has Corbus released Phase II results. It has not been approved by the FDA for phase III trials yet. Again, there is currently no pricing that has been made for Resunab and anything stating otherwise is pure speculation not based on facts.

    #457348
    Maz
    Keymaster

    You may well be right, Grey Pilgrim, but are you interested in trying AP? This forum is a free service, moderated by rheumatic AP patient volunteers for fellow patients who are interested in AP and we’d be happy to offer resources to you, if you are actually interested. If not, then this forum may not be for you and you may find that the Inspire community is better fit for your support needs.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #457351
    Maz
    Keymaster

    Originally developed in the U.S. and stage 3 trials and fast-track approval from the FDA is being sought, Sativex (generic name: Nabiximols) a similar cannabinoid drug in an oral spray form, was approved in UK in 2010 for MS spasticity and some other countries for select disease types.

    https://www.gwpharm.com/products-pipeline/sativex

    https://en.wikipedia.org/wiki/Nabiximols

    As referenced by the MS Society of Canada: mssociety.ca/en/research/medmmo-marij-sativex-june05.htm

    According to Bayer Canada, the cost of Sativex per vial is $124.95 (base price). Each vial contains approximately 51 sprays. The average dose per day is five sprays at an average cost of $12.25 per day.

    http://nationalpainreport.com/marijuana-spray-gets-fast-track-review-from-fda-8823763.html

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #457353
    lolly2pops
    Participant

    hi Maz,
    Thank you for all the helpful feedback. I am taking calcium and vit d because the immunosuppresant Chloroquine Sulphate which im also taking is calpable of causing bone weakness and i also monitor my calcium levels quite often. I usually take doxy at 9am then calcium at 1pm and the last doxy for the day at 9pm. I am based in South Africa and though the generic minocycline cost about 70 dollars per month, i still considet it pricey as im currently unemployed. Thank you again for all the links and will go through everything. Good probiotics are also costly here, you get ten for 10 dollars and they last for 3 days. I try my best to stay on them but im not taking enough.

    Dx: systemic sclerosis in April 2016 with lung involvement (UiP), raynauds, sausage fingers, and overall swelling, high skin score, general body weakness, fatigue and weight loss . Symptoms started in 2005 and took 10 yrs to get diagnosed. Current meds: 100mg minocycline X2 p/d, milk thistle, turmeryne, mega C 1000 X2 p/d, calcium channel blocker, chloroquine 200mg p/d and probiotics. Tried NAC but this caused stomach pain and discomfort. Other meds used: imuran (oct 2016-dec2017), doxycycline and cellcept

    #457355
    lolly2pops
    Participant

    hi Lynne,
    Thank you so much for all this. I hope many more on this forum get to see it. i need more time to go through it all and im glad to meet someone who has managed to restore their lungs and i trust God it will workout for my good.

    Dx: systemic sclerosis in April 2016 with lung involvement (UiP), raynauds, sausage fingers, and overall swelling, high skin score, general body weakness, fatigue and weight loss . Symptoms started in 2005 and took 10 yrs to get diagnosed. Current meds: 100mg minocycline X2 p/d, milk thistle, turmeryne, mega C 1000 X2 p/d, calcium channel blocker, chloroquine 200mg p/d and probiotics. Tried NAC but this caused stomach pain and discomfort. Other meds used: imuran (oct 2016-dec2017), doxycycline and cellcept

    #457356
    lolly2pops
    Participant

    Oksana,
    I trust all is well with you and the AP.
    Thank you for leading me to this side.

    Much love.

    Dx: systemic sclerosis in April 2016 with lung involvement (UiP), raynauds, sausage fingers, and overall swelling, high skin score, general body weakness, fatigue and weight loss . Symptoms started in 2005 and took 10 yrs to get diagnosed. Current meds: 100mg minocycline X2 p/d, milk thistle, turmeryne, mega C 1000 X2 p/d, calcium channel blocker, chloroquine 200mg p/d and probiotics. Tried NAC but this caused stomach pain and discomfort. Other meds used: imuran (oct 2016-dec2017), doxycycline and cellcept

    #457360
    Oksana
    Participant

    greypilgrim, I saw this information in that very PDF file of the Corbus corporate presentation you had posted on Inspire a couple of weeks ago. Here is the link https://www.inspire.com/groups/scleroderma-foundation/discussion/complete-breakdown-of-resunabs-phase-ii-trial-data-looks-very-positive/
    I remember it was written there (in small letters, but I never omit the small-lettered texts)that pricing for Resunab was planned to be 100 000$ per patient per year in the USA and twice less in Europe. It was on the page with a table where pricing for some PF and PAH medications was shown for comparison. Besides, you didn’t mention it was a super secret information: you posted this file for all the Inspire members (and not only them) to see. So, I don’t feel guilty: I only stated what I saw. I doubt if all that presentation was a joke.

    #457365
    Oksana
    Participant

    lolly2pops, yes I’m doing quite fine. Having an app in some 3 weeks together with PFT ant CT scan of lungs, curious to know the results.

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