Using melatonin to treat sarcoidosis

Thank you for taking the time to reply! I also thought of talking with my doc about this, but I'm afraid that he might misinterpret my intentions. additionally, I know from my own experience that most doctors do not accept suggestions from patients. I might have a chance if I can prove that other doctors prescribe melatonin for sarcoidosis.

Thanks again!

Magda ~

I found a few posting regarding melatonin.  It reads as such:

"I am usually a big skeptic when it comes to treatments that involve the use on supplements. Anything can cure just about anything, it seems-- especially if it is being sold on the internet. So when my friend went ahead and tried melatonin as a cure for the sarcoidosis, I tried to convince him of the placebo effect and the lack of proven studies. Nevertheless, as the months go by and he is stable and seems to be in remission, I have to let all you folks know about this treatment, so at least you can make the decision for yourself."

" I also found some documentation, and after finding this, I figured that it might be more than just a fluke or coincidence that my friend is feeling better, so I wanted to give everyone a heads up:

1995 letter to Lancet re melatonin

Melatonin for treatment of chronic refractory sarcoidosis

SIR -- Melatonin has an immunoregulatory action,(1) and an in-vivo inhibitory effect on tumour-cell growth as well as on the proliferation of different cell types.(2) This has led to the use of melatonin in the treatment of solid tumours.(3) Melatonin also inhibits growth of fibroblasts derived from schleroderma (unpublished). Sarcoidosis results from an exaggerated cell-immune response to a variety of antigens. T lymphocytes are thought to be the main cell triggered by this process with consequent proliferation and activation.(4) Sarcoidosis of the lungs is characterised by granulomatous inflitration of the alveolar-capillary space followed by fibrosis. Treatment is usually with steroids; methotrexate, chloroquine, or azathioprine may also control acute disease but have pronounced side-effects. We report the treatment with melatonin of two cases of chronic sarcoidosis unresponsive to long-term steroid therapy.

A 34-year-old woman with sarcoidosis since 1990 had steroid treatment for 16 months from diagnosis with no improvement of her chest radiograph. She had exertional dyspnoea; FVC was reduced to 70% of predicted and DL(co) to 60% of predicted. High-resolution computed tomography (CT) of the lung showed swelling of hilar lymphnodes and a diffuse fibrosis characterised by interstitial reticular parenchymal infiltrates and thickening of bronchial walls. Serum angiotensin-converting-enyme (ACE) values were increased (180 U/L, colorimetric method. normal range 80-120 U/L). After the patient refused immunosuppressive therapy, 20 mg of melatonin daily (at 2000 h) was started with her consent. 4 months later, dyspnoea had disappeared and the chest radiograph showed reduction of the reticular nodulation and the DL(co) was 85% predicted. ACE values were normal (10 U/L). Melatonin was continued and a year later, a chest radiograph showed no interstitial involvement. In September, 1993, melatonin was tapered to 10 mg daily and discontinued in June, 1994. In January, 1995, CT confirmed disappearance of the interstitial involvement and reduction of hilar lymphnodes.

In 1992, sarcoidosis was diagnosed after a skin biopsy in a 45-year-old woman with reddish nodular papules on her right knee, which spread to her right cheekbone, left ear, and right elbow. Chest radiograph showed interstitial nodules; a gallium scintiscan was positive. 9 months of steroid therapy (15 mg prednisone per day) did not improve the chest radiograph and she complained of increased exertional dyspnoea. Lung CT showed swelling of hilar lymphnodes and micronodular and nodular interstitial images. ACE concentrations were increased (160 U/L). After treatment with 20 mg melatonin daily (at 2000 h) for 5 months, the skin lesions were almost completely cleared, and dyspnoea reduced. After melatonin was discontinued she reported relapse with presence of skin lesions and dyspnoea after 6 months. Melatonin for 3 months again cleared the skin lesions and abolished dyspnoea. CT showed disappearance of lymphnode swelling and interstitial thickening.

Resolution of symptoms and radiological findins of these two cases of chronic sarcoidosis, previously unresponsive to steroid treatment, suggest that melatonin might be a useful treatment. There were no side-effects. Further studies on acute sarcoidosis and on more patients with chronic sarcoidosis are needed to validate our observations".

I, frustrated61, found this information very helpful.  Hopefully, other's may find this  helpful as well.

*Matteo L Cagnoni, Arrigo Lombardi, Marco Matucci Cerinic, Giovanni L Dedola, Albert Pignone

*Via Bolognese 178, 50139 Florence, Italy; Institutes of Dermatology, University of Siena; Institute of Internal Medicine IV, University of Florence; Radiology Unit, Azlenda Ospedaliera Careggi, Florence; and Institute of Internal Medicine, University of Cagliari

(1) Maestroni GJM, Conti A, Pierpaoli W. The immune regulatory role of melatonin. In: Gupta D, attanasio A, Reiter RJ, eds. The pineal gland and cancer. Brain Research Promotion, Tubingen, 1988: 33-143.

(2) Lapin V, Ebels I. The role of the pineal gland in neuroendocrine control mechanism of neoplastic growth. J Neurol Transm 1981; 50: 275-82.

(3) Neri B, Gemelli MR, Cini G. Effects of melatonin administration on cytokine production in patients with advanced solid tumors. Oncol Rep 1994; 1:1-13.

(4) James DG, Jones WW. Immunology of sarcoidosis. Am J Med 1982; 72:5-13.

[from Journal Pineal Research, 2006 Sep;41(2):95-100]

Melatonin is a safe and effective treatment for chronic pulmonary and extrapulmonary sarcoidosis.

Pignone AM, Rosso AD, Fiori G, Matucci-Cerinic M, Becucci A, Tempestini A, Livi R, Generini S, Gramigna L, Benvenuti C, Carossino AM, Conforti ML, Perfetto F.

Section of Rheumatology, Department of Internal Medicine, University of Florence, Florence, Italy. pignone@unifi.it

Chronic sarcoidosis (CS) is often unresponsive to usual treatments. Melatonin, an immunoregulatory drug, was employed in CS patients in whom usual treatments were ineffective or induced severe side effects. Melatonin was given for 2 yr (20 mg/day in the first year, 10 mg/day in the second year) to 18 CS patients. Pulmonary function tests, chest X rays, pulmonary computed tomography, Ga(67) scintigraphy and angiotensin-converting enzyme (ACE) were assayed at baseline and in the follow-up. Normalization of ACE, improvement of pulmonary parameters and resolution of skin involvement were found in the patients given melatonin. After 24 months of melatonin therapy, hylar adenopathy completely resolved in eight patients and parenchymal lesions were markedly improved in all patients; in the five patients with reduced diffusion capacity of the lung for carbon monoxide, the values normalized after 6 months of therapy and remained stable until month 24. After 24 months, Ga(67) pulmonary and extra-pulmonary uptake was totally normalized in seven patients and, at month 12 months, ACE was normalized in six patients in which the values were high at the baseline. Skin lesions, present in three patients, completely disappeared at month 24 months. No side effects were experienced and no disease relapse was observed during melatonin treatment. Melatonin may be an effective and safe therapy for CS when other treatments fail or cause side effects.

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I still remain skeptical, but I have done a lot of searching about melatonin and I could not find too much in the way of side effects from it. However, I would also urge anyone that is wanting to try it to check with their doctor and pharmacist, to make certain that it doesn't react badly with any current medications you are on. My friend has been taking 20mg per day, at night, for the past year and a half, and is doing well, and is off prednisone.

I remain on the fence about this supposed "cure" but I also think the info needs to get out there where it might do some good.

If anyone has tried it, feel free to post your experiences so we can all learn if it might actually be helpful.

Good luck, Magda.  I as well as many people suffering from sarcoid  are always looking for something new.  Try as long as it doesn't interfer with your medication.

Frustrated61

wowzer!  That information I wrote seems pretty much overkill!   Sorry.

Anyway, Magda, you and your family have a wonderful New Year and stay healthy!

Warm regards

Frustrated <3>

Hi Norman,

Thanks for contacting me...What friend are you talking about? This is something I've found over the internet and wondered if someone knows anything about using melatonin to treat sarcoidosis....if you google the topic, you can find some things (including studies) regarding melatonin being beneficial for sarcoid patients, but more research needs to be done.

Wishing you all the best,

Magda

Hi,

Sorry, I guess I misread. In your text it says something about ' a friend of mine"....I thought it was your friend.  I think I am going to try this if my doc lets me. I resisted taking pred for a long time, but I've been on 10mg for about 4-5 years now....just don't like the idea of taking it. I'm pretty stable basically , which is good.  Hope all is well with you.  Thanks

Hi Norman,

Don't worry about it . We all misread information at times. I'm also on pred for several months, and I can't wait to stop it. I can't help thinking about what it does to our immune system...

Cheers,

Magda