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My goodness Rosey, you are overdue for a break in all this. I hope you continue to feel better than you have done for years, you so deserve it. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Parisa,
I'm a little late chiming in but, just wanted to convey to you how thrilled I am for your husband. He (and you) are an inspiration to so many people struggling with similar issues. Keep up the good work, and give your husband a big hug from his RBF family! To be able to go out for a run is AMAZING:D
Congrats, Congrats, Congrats!!:roll-laugh::roll-laugh:
Maria
Rosey,
I'm SO sorry to hear about your struggles–that had to have been so scarey for you to go through. You are one tough lady, and I know that you will continue to get better and stronger.
I'm glad to hear you're feeling much better–take care of yourself.
Maria
Hi All;
Here is a post my pal Dolores(remember her?) made on the Rheumatic site.I am sure she wants you all to see it also.Hi Marla. it is not a pipe dream. I had severed pulmonary fibrosis back when I was diagnosed with CREST and MCTD & R/A. My doc's said I had approximately 5-6 months more to live. That is how bad my lungs were sclerosed. I went for pulmonary function test and was breathing at 50% capacity so they sent me for PH test which called for me getting on a treadmill. I nearly passed out and so the test was aborted. I never went back, but stayed on my minocin for 5 yrs and gradually got better. My ANA & RF were sky high at 640 and in the high 90's. My scans confirmed the Fibrosis in the lungs. Today, my blood work is 0 & 0 and my latest chest x-rays show no sign of disease. The findings are all normal….. I still take 50 mg. of Minocin MWF as a preventative. My doc has declared me in complete remission. Tomorrow I will be 74 yrs. old. I can dance, sing, snorkle, hike, lift heavy things and take care of my 96 yr. old Mom with Als.I have
elinimated all heart meds, asthma meds, cholesterol meds, have halved my diabetes meds and my antihypertensive meds. The final organ to heal is my digestive track. That is healing fine. I am no longer on Proton pump meds and the diarrhea is gone. I take a lactaid once in a while for lactose intolerance, but find that I am becoming more and more tolerant to most dairy products. Once I had to carry bottles of medication around with me. Now I take 3-4 pills per/day and feeling fine and stronger than ever….. That pipe dream can be a reality. Just hang in there. Best to you, DoloresI remember Dolores' posts! There were only a few posts like that when I came to the Roadback site but I knew if they could reverse their disease so could my husband.
Hi Parisa;
I knew you would get a lift from Dodo's post.She had SD Sine that eventually turned into Crest ans was pretty far gone by the time the doctors found out exactly what she had.
She did 2 years AP and 3 years MP,her big improvements were while on MP and I would guess that they were due to using 3 antibiotics instead of only mino.I still wonder about Benicar.[user=31]Lynne G./SD[/user] wrote:
I knew you would get a lift from Dodo's post.
Thanks for posting this, Lynne. Very inspirational!!
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
[user=31]Lynne G./SD[/user] wrote:
Hi All;
Here is a post my pal Dolores(remember her?) made on the Rheumatic site.I am sure she wants you all to see it also.Hi Marla. it is not a pipe dream. I had severed pulmonary fibrosis back when I was diagnosed with CREST and MCTD & R/A. My doc's said I had approximately 5-6 months more to live. That is how bad my lungs were sclerosed. I went for pulmonary function test and was breathing at 50% capacity so they sent me for PH test which called for me getting on a treadmill. I nearly passed out and so the test was aborted. I never went back, but stayed on my minocin for 5 yrs and gradually got better. My ANA & RF were sky high at 640 and in the high 90's. My scans confirmed the Fibrosis in the lungs. Today, my blood work is 0 & 0 and my latest chest x-rays show no sign of disease. The findings are all normal….. I still take 50 mg. of Minocin MWF as a preventative. My doc has declared me in complete remission. Tomorrow I will be 74 yrs. old. I can dance, sing, snorkle, hike, lift heavy things and take care of my 96 yr. old Mom with Als.I have
elinimated all heart meds, asthma meds, cholesterol meds, have halved my diabetes meds and my antihypertensive meds. The final organ to heal is my digestive track. That is healing fine. I am no longer on Proton pump meds and the diarrhea is gone. I take a lactaid once in a while for lactose intolerance, but find that I am becoming more and more tolerant to most dairy products. Once I had to carry bottles of medication around with me. Now I take 3-4 pills per/day and feeling fine and stronger than ever….. That pipe dream can be a reality. Just hang in there. Best to you, DoloresThis is a very uplifting post, can't wait to read it to my sleeping beauty mom…Great to hear from Delores! Thanks Lynne! xxoo Michou
Hi Parisa,
That's great news and extremely rewarding! I go back to see my lung dr on Sept 14th. I am scheduled to have full PFTs, a CT scan of my lungs, and an Echo. I can't wait. My last IV treatment with Dr. S was in June and I continue to take mino 100 mg 2x/day.
I am hoping for big improvements like your husband has had. Although, I must admit I don't feel anywhere near as good as I did after my first round of IV treatments last November. Not sure why but will be patient.
Take care and thanks for sharing the wonderful news!
Alli
[user=1785]Alli[/user] wrote:
Hi Parisa,
That's great news and extremely rewarding! I go back to see my lung dr on Sept 14th. I am scheduled to have full PFTs, a CT scan of my lungs, and an Echo. I can't wait. My last IV treatment with Dr. S was in June and I continue to take mino 100 mg 2x/day.
I am hoping for big improvements like your husband has had. Although, I must admit I don't feel anywhere near as good as I did after my first round of IV treatments last November. Not sure why but will be patient.
Take care and thanks for sharing the wonderful news!
Alli
Hi Alli,
Have you tried LDN? Although I have mild PH, I didn't think I had lung symptoms. But when my pressures went up, I tried increasing my dose of LDN and it resulted in a marked improvement in my breathing and ability to do sports, etc. I guess I had symptoms I didn't know about. Anyway adding LDN to your repertoire might make a difference.
Hi Alli,
The first sign that my husband's lungs were improving is when the progression stopped. He would usually feel better than the CT scans would show and over time they slowly improved also. We saw the pulmonologist and he said that he considers my husband's lungs basically normal now and that we don't need to see him. My husband didn't have a CT scan done this year as he's decided he's had too many over the past few years. The pulmonologist would have liked to see one from a scientific point of view but healthwise there was no reason to have one.
Are you still taking Cellcept?
Hi Parisa,
No, I have not tried LDN. I asked my lung dr., rheumatologist and primary care physician about it as well as NAC but none of them seemed to know what they were, strange maybe?
I am going to email Dr. S. to see if he thinks I would be a good candidate to take the drug and if so then maybe he can help me acquire it. According to what I've read online and on here it seems to be a key factor.
I am still on Cellcept, 1000 mg a day. I have been taking both Cellcept and Tracleer since December 2007. My first pft's did not indicate any improvement after starting the drugs, as a matter of fact the results were my worst. After starting AP, my first full pft's showed significant improvement. Which is why I am excited for my appointment next month. If Dr. S. does prescribe LDN, I will wait until after the lung appointment to start taking it. That way I can keep an accurate accounting of my improvements and to what in particular has helped.
Thanks for your reply……..Alli
Hi Red Rock,
I am not very good at manuevering around the site so I answered some of your questions in my reply to Parisa.
Please bear with me and thanks for your questions regarding LDN. I am definately going to inquire about it.
Take care….Alli
[user=1785]Alli[/user] wrote:
I am still on Cellcept, 1000 mg a day. I have been taking both Cellcept and Tracleer since December 2007. My first pft's did not indicate any improvement after starting the drugs, as a matter of fact the results were my worst. After starting AP, my first full pft's showed significant improvement. Which is why I am excited for my appointment next month. If Dr. S. does prescribe LDN, I will wait until after the lung appointment to start taking it. That way I can keep an accurate accounting of my improvements and to what in particular has helped.
Hi Alli,
Lovely to hear from you and I'm putting it out there for you that your PFTs have improved!
Just noticed the suggestion by Redrock re: LDN, which is a good one, but thought it worth mentioning that it might be a good idea to first work with Dr S to wean from the Cellcept. Cellcept is a very powerful immune-suppressant, given to organ transplant patients to prevent rejection. For scleroderma, it's basically being used off-label to palliate and mask disease progression.
On the other hand, the purpose of LDN (low dose naltrexone) is to boost immune function. It does this by temporarily blocking endorphin receptors in the brain while sleeping to promote a rebound of endorphins, which then boosts and modulates immune function.
So, in effect, the two drugs – Cellcept and LDN – would be working at cross-purposes and you could well be taking both for naught. LDN works so nicely with AP because it is working with the immune system, rather than against it. It's kind of like a person who gets a sense of well-being when they exercise with a rush of endorphins…people who are physically fit just have a stronger constitution, but they also have that sense of inner well-being. When they exercise, that is the endorphins rushing in to provide that feeling. In effect, LDN is promoting immune function, whereas Cellcept is interfering with it. I hope how I've explained that makes sense?
As you've been on mino and IVs now for a while and noticing some benefit, perhaps the next step is to ask Dr. S. whether or not it would be wise to work on slowly weaning from the Cellcept? Once you've managed to move away from that particular drug, it might be a nice adjunct to then add LDN. Doing so now may be a waste as you'd just have two drugs working at odds with one another.
Just a fellow patient suggestion, of course. 😉 Here is the official LDN website, so you can read more about how this compounded drug works. Very important to ensure that it is prescribed and compounded in the “immediate release” form by a compounding pharmacy who knows what they are doing.
http://www.lowdosenaltrexone.org/
Hope something here helps, Alli, and so wonderful to hear your AP is now kicking in and you are seeing PFT improvements with the addition of mino! YAY!
Peace, Maz
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