Methotrexate & AP

[Ali]

Hi, I have been taking the AP since 1997. Diagnosed with Limited Scleroderma since 1992.
In July 2016 I was diagnosed with Pulmonary Arterial Hypertension due to Sjogren’s Syndrome in the lungs (no fibrosis) just inflammation from white cells.
Anyway, it has flared up again and so the doctor has put me on prednisone 15mg and then wants me to go on Methotrexate 15mg in a couple of weeks(not sure how long) as the inflammation isn’t too bad!
My question is, I have read prednisone is okay with AP, but Methotrexate is not?
Has anyone taken Methotrexate with AP?
Alison

[Lynne G.SD]

Hi Alison;
I used the two together for about one year and then weened off the MTX without any problem.This med takes several months to show any benefit.

[Spiffy1]

What other meds are you on for your PH? I am interested that your doctor recommended methotrexate and prednisone for your PH flare. Do they have you on or have they suggested medicines for you that are specific to PH like sildinifil or Tracleer? Have you found a specialist that deals with PH?

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Ali]

Spiffy, I have been on Opsumit 10mg since diagnosis of PAH in July 2016. I have seen this pulmonologist since 2013 when I initially had Nonspecific Interstitial Pneumonia (NSIP) and was treated by the Rheumatologist as well with first prednisone and then on Methotrexate for 3 years.
I weaned off the Methotrexate in Jan. 2016 and started LDN then went on the AP in September 2016.

My Rheumatologist and Pulmonologist don’t want me on prednisone too long due to it affecting my kidneys etc, so starting Methotrexate is really the only option!

I am not completely sure whether the Methotrexate caused my lung issues to get worse (as studies have shown – acute hypersensitivity pneumonitis is the most feared complication) but after 3 years it certainly wasn’t helping them as I ended up with PAH.

I think this flare up is since being exposed to bronchitis by my granddaughter 6 weeks ago my lungs got worse and they got inflamed. CT scan showed interstitial pneumonitis and the bronchoscopy determined the same prognosis in 2013.

I know Mycophenolate Mofetil Improves Lung Function in Connective Tissue Disease-associated Interstitial Lung Disease, but when I was put on azathioprine back in 2013 I was toxic in my liver within 4 weeks. My body did not tolerate strong chemo drugs, thus the use of Methotrexate which is apparently better for inflammation!

I will probably stay on the low dose of prednisone to not interfere with the LDN dosage as this has greatly assisted me in my health with lack of fatigue, no puffiness in my fingers, skin is loose in areas that were tight, calcinosis and pitting on my fingers is minimal.

So hopefully this is just a flare up due to infection as there is no signs of lymphoma and my FVC% and DLCO% are the same as in June, lungs sound clear through the stethoscope too. I am not breathless or unable to exercise…just have this dreadful cough.

Since being on 5mg of prednisone my cough has significantly stopped and all phlegm is gone. I don’t think I shall go up to 15mg of prednisone as I am tolerating the 5mg dose well and from what I have read here on others experiences 5mg is a good dosage. I was using the inhaler Symbicort 200 and this was helping a little but stopped it now on prednisone.

Well I shall see how my six minute walk is on Wednesday this week as in June I reached 546 meters in 6 minutes with oxygen at 97/98.

Thanks for you advice also Lynne 😊

[Spiffy1]

It sounds like you have a great handle on your situation. Congrats on your six minute walk oxygen saturation level. How much LDN are you taking? Have you had a sleep study done?

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Cheryl F]

Ali,

I don’t really have anything specific to add, but I read your post and wanted to chime in a say a couple things to you, mainly, GREAT JOB navigating this very difficult situation, doing AP and LDN while working with conventional doctors and facing advancing disease is a tough place to find yourself, I know, I also travel a similar path. My daughter fully and easily recovered from SD (with lung involvement) using AP. A few years later, my husband got RA and fully and quickly recovered from
RA using AP. THEN all hell broke loose, he has several very complex autoimmune issues that have us seeing many specialists monthly. They haven’t really figured out what is going on but he has been on prednisone, aza, cellcept, sirolimus, tacrolimus, cyclosporine, and more. It’s just a difficult place to be and I wanted to tell you, you are not alone.

[Ali]

Spiffy1,
Did my six minute walk test today..considering I’ve got fatigue and some GI issues from the prednisone…I did 526 metres in 6 minutes.
My oxygen saturation was lower due to the inflammation…got down to 90 after 4 mins. But the prednisone is definitely stopping the coughing 😊

I have thoughts of doing a sleep study as it is at the same clinic I attend first the pulmonologist. Why do you ask?

I started at 1.5mg for a couple of months and then did went on 3mg for 2 weeks and onto 4.5mg. It has at times affected my sleeping but I just love the healing it has given me with GI issues, skin score and fatigue. It’s truly a wonder drug!

Thank you for the encouragement!
Alison

[Ali]

Cheryl F,
Thanks for the encouragement as I know what you mean regarding doctors and medications. Over these past 26 years I have had to push hard to get treatments that I believe are best for me!

The Rheumatologist that prescribed me the Minocycline is the one who diagnosed me in 1992. Initially I sort the AP out in 1997 from finding information online, then I found a Rheumatologist who prescribed this treatment in Sydney, Australia and he believed that it could help me.

After taking the Minocycline M,W,F 200mg and Clindamycin 1200mg every Tuesday, by 3 years my bloods were back to normal, ANA went from 1<2560 to 1<130, my erythrocyte sedimentation rate (ESR or sed rate) and C-reactive protein (CRP) were normal. No sign of the disease….but I stupidly went off the AP in 2000 and in 2006 things started to return, Raynaulds, Hypertension and lung issues by 2013. Couldn’t find an AP doctor so went on Methotrexate from 2013-2016 as mylungs were bad.

Finally after the PAH prognosis in July 2016 I thought I’m taking my life into my own hands, went to the Rheumatologist that first diagnosed me in 1992 and said to him “here are the results from when I last did this AP therapy, I’ve got nothing to lose but a lot to gain”, “I even said I would sign a waiver or he can use me as a study”. Well I convinced him enough as he was so impressed on how well I was after all these years and now more impressed that I’ve responded well to the as it is keeping most if the symptoms of Scleroderma at bay.

It would seem this secondary autoimmune issue ‘Sjogren’s Syndrome’ is affecting my lungs..gggrrr.

Well I’m prepared for the onslaught of side effects from Methotrexate but now I’m on the AP and LDN, I am hoping it will be a short term fix.

Alison

[Cheryl F]

My daughter (SD in 2006) has been off all meds for a few years too. Yes it concerns me that the symptoms will come back and be harder to treat. Luckily for us, while she was in remission for all these years, she went to med school herself so we won’t have to find a doctor, she is a doctor. No more begging for AP or supportive treatments.

[PhilC]

Hi Alison,

Here’s some information that may be helpful:

Current therapies for the treatment of systemic sclerosis-related pulmonary arterial hypertension: efficacy and safety.
https://www.ncbi.nlm.nih.gov/pubmed/24387049

PDE5 inhibitors (e.g., sildenafil, tadalafil) are among the drugs used to treat PAH. And there is something interesting about the PDE5 inhibitors that may not be well known — they have anti-inflammatory properties (see below).

Effects of tadalafil (PDE5 inhibitor) and roflumilast (PDE4 inhibitor) on airway reactivity and markers of inflammation in ovalbumin-induced airway hyperresponsiveness in guinea pigs.
https://www.ncbi.nlm.nih.gov/pubmed/29375047

I mention this because tadalafil is probably a safer treatment than methotrexate (MTX). Also, I noticed that MTX is not listed as one of the recommended treatments for PAH in the first article above.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Spiffy1]

Phil, that is what I wondered too. But I think that because her PAH is secondary to an autoimmune process that sometimes if they treat the autoimmune part of it then the PAH symptoms get better. I know with my dad they told him that it might would have been better if his was secondary to an autoimmune condition as opposed to primary. Allison, the reason I asked about the sleep study is because sleep APNEA can either be a cause of PAH or it can exacerbate it. Come to find out my tall thin dad was having multiple episodes of sleep apnea a night. We always wondered if there was where his primary PAH came from. I know I should be brave and have a study done too. My brother now uses a cpap or bipap I can’t remeber which. For your peace of mind I had just wondered if you had done it. Thank you for the update. Keep us posted.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Ali]

PhilC & Spiffy1,

My pulmonologist put me on the latest drug Opsumit two years ago after clinical trials showed it wss better with side effects than Bosentan for PAH. https://sclerodermanews.com/opsumit-macitentan/?amp

Also the Pulmonary Hypotension website shows the trials – https://pulmonaryhypertensionnews.com/opsumit-macitentan-pulmonary-arterial-hypertension/

My pulmonologist suggested if the PAH didn’t improve within the first six months on just Opsumit plus after having another ‘Right Heart Catheterization’ doing a six minute walk along with PFT’s, if these tests didn’t improve after six months we would have to look at taking Sildenafil.

But the Right Heart Cath showed my means pressure at 27mmHg when it was over 31mmHg. Since taking Opsumit, I can walk up steps without puffing, get up to 546 metres in six minutes, my lung functions are stable. Also my recent Echocardiogram in June showed my heart to be in perfect shape/condition.

I guess my recent results showed some inflammation of the walls of the alveoli (air sacs) in the lungs – thus being pneumonitis.

Non-specific interstitial pneumonia (NSIP) of which I have is the second most common morphological and pathological pattern of the interstitial lung diseases. NSIP has two main subtypes:
– fibrotic type: most common, having a more dismal outcome
– cellular type: less common, but carries a much better prognosis due to a very good response to the treatments

On my CT imaging, it was cellular which is the most common features that are relatively symmetric and bilateral ground-glass opacities.
Cellular non-specific interstitial pneumonia: less common; interstitial thickening is mainly due to infiltration of inflammatory cells and type II pneumocyte hyperplasia. Lung architecture is ususlly preserved.

So I guess we need to get this inflammation under control. Taking 5mg of Prednisone this past week has definitely helped and I started my first dose of Methotrexate 5mg this week.

I am starting my new dosage of 100mg of Minocycline twice a day, everday tomorrow, but omitting the LDN only on the night I take Methotrexate as it doesn’t do well with immunesuppressants.

Phil, I will take these articles to ny pulmonologist as theses these are valid studies and I am curious about other options if necessary for my health…so thank you for those websites.

Spiffy1, I have thought of a sleep test so will ask also if this will be of any use.

Thank you both for your responses and time in writing to me.

Alison

[Spiffy1]

Alison, the other day I was studying PH and read an article about a new blood test for PH. There is a marker that is higher in people with PH. It might could one day take the place of the right Heart Cath. I think it could also be used to monitor how effective meds are. I will see if I can find it.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[PhilC]

Hi Alison,

Ali wrote:

I am starting my new dosage of 100mg of Minocycline twice a day, everday tomorrow, but omitting the LDN only on the night I take Methotrexate as it doesn’t do well with immunesuppressants.

That’s fine because it’s not necessary to take LDN every day. I don’t take LDN, but if I did I would take it every other day (or M/W/F). And the idea that LDN is incompatible with immunosuppressants (including prednisone) is a myth — there’s no reason they can’t be taken together. Another myth is that LDN must be taken at bedtime. Taking LDN at bedtime was never more than a suggestion, but somehow it got twisted around into being a “requirement”.

For more information, see:
https://www.ldnscience.org/patients/qa/taking-ldn-and-other-substances-treatments

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Spiffy1]

Phil, what is your reasoning behind MWF with LDN? I was told consistency was key. The reason for nighttime dosing I was told is because we make more endorphins between 2 and 4 am and the LDN blocks the endorphin receptors during that time so our body is tricked into making even more. When those receptors are opened up again they receive the endorphins and then the patient has more circulating in the blood promoting the healing effects. However, they do say that if for some reason LDN cannot be taken at night that it can be effective for some people at another time. I forget the authors name, but before I started taking LDN I read her book called THe LDN Book. It answered a lot of questions for me.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Author]

Posts