Benefits of Mast Cell Disorder Drugs for ME/CFS?

[Hip]

Hi Nanonug

With your hypothesis that ME/CFS may involve mast cell activation, I just wondered if you have experimentally tested any of the standard drugs that are used to treat mast cell disorders, and if so, what benefits you found these drugs offered your ME/CFS?

Some of the drugs used to treat mast cell disorders and mastocytosis are the following:

Management

This is concerned mainly with symptom control, as there is currently no cure. Systemic mastocytosis is usually managed by haematologists.
Acute anaphylaxis

• Those prone to acute severe symptoms should avoid trigger factors where possible, wear a MedicAlert® bracelet and carry written treatment protocols from their specialist.
• Acute anaphylaxis is treated with intramuscular adrenaline (epinephrine), antihistamines (H1 and H2 receptor blockers), fluids and pressor agents.
• Patients with recurrent anaphylactoid reactions should carry injectable adrenaline (epinephrine) in pen format for emergency use.
• Consider immunotherapy against insect venom.

Skin and vascular symptoms

• For pruritus, weals and flushing - H1 and H2 receptor antagonists such as chlorphenamine, ketotifen and cimetidine.
• Mast cell stabilizers: sodium cromoglicate, nedocromil and ketotifen.
• Local corticosteroids for skin lesions. Intralesional steroid injection is sometimes used.
• Psoralen in combination with ultraviolet A (PUVA) treatment - gives temporary benefit for skin lesions.

Bronchospasm

• Inhaled bronchodilators, eg salbutamol.

Gastrointestinal symptoms

• H2 receptor antagonists or proton pump inhibitors for peptic ulceration.
• Oral sodium cromoglicate for diarrhoea and abdominal pain.
• Anticholinergics for diarrhoea.

Other possible systemic treatments

• Leukotriene inhibitors have been used in the treatment of systemic mastocytosis.
• Systemic corticosteroids may be helpful for malabsorption, ascites, and bone pain, to prevent anaphylaxis and for severe skin disease.
• Low-dose aspirin may be helpful for symptoms resistant to H1 and H2 antagonists alone, but must be started cautiously under supervision:
  • The patient, premedicated with H1 and H2 antihistamines, may take small doses of aspirin, titrated slowly to reach a plasma level of 20-30 mg/100 mL.
  • Treatment should be started in a controlled environment, because aspirin can induce mast cell mediator release and subsequent cardiovascular collapse.

Bone pain

• Oral sodium cromoglicate may help.
• Osteoporosis prevention/treatment - calcium, vitamin D, and bisphosphonates.

Drugs to avoid

• Beta-blockers are contra-indicated in patients with systemic mastocytosis undergoing surgery - these drugs may counteract endogenous adrenaline (epinephrine) and may precipitate anaphylaxis.
• Avoid alpha-blockers and cholinergic antagonists.

Aggressive disease

• Splenectomy may be helpful for patients with significant hypersplenism or portal hypertension (it may reduce the mast cell burden and improve cytopenias).
• Aggressive systemic forms of mastocytosis may be treated with interferon alfa, with or without corticosteroids, or cladribine. In some cases, more intensive treatments such asimatinib, or drug combinations, may be considered.
• Bone marrow transplantation may be considered in some extreme cases but is currently experimental treatment.
• For patients with mast cell sarcoma, surgical excision with consecutive radiation and/or high-dose chemotherapy.

Source: www.patient.co.uk/doctor/Mastocytosis-and-Mast-Cell-Disorders.htm

 

[camas]

Hi Hip,

Until Nanonug can respond, I'll let you know that some of us are experimenting with over-the-counter H1 and H2 blockers, among other things, and reporting our results on this thread.

I'm seeing the most benefit from Thorne's water soluble Quercetone which was found to be more effective than Cromolyn in this study.

 

[nanonug]

With your hypothesis that ME/CFS may involve mast cell activation, I just wondered if you have experimentally tested any of the standard drugs that are used to treat mast cell disorders, and if so, what benefits you found these drugs offered your ME/CFS?

In terms of drugs, I am currently only taking H1 and H2 blockers. I also take Nexium for gastritis (unfortunately!) I am waiting for lab test results and will then decide together with may imunologist on howe to proceed, treatment-wise. In terms of supplements, I have been taking Thorne's Quercetone for some time. Recently, I also started Normast. All these help a bit but are no panacea.

Starting with H1 and H2 blockers is standard practice for mast cell disorders so you may want to consider that.

 

[perchance dreamer]

Regular Quercetin has a negative effect on my sleep, for some reason. I wonder if Quercetone would do the same thing?

 

[Hip]

Regular Quercetin has a negative effect on my sleep, for some reason. I wonder if Quercetone would do the same thing?

I also found that quercetin would keep me awake at night, and also overstimulate me during the day. Quercetin and caffeine both agonize the adenosine A1 receptors, and I certainly find you get caffeine-like overstimulation all day when you take quercetin. I took a dose of 650 mg, and this was not too bad in terms of insomnia and stimulation, provided I took it first thing in the morning, well away from bedtime. But higher doses of quercetin left me feeling too "wired".

 

[Sushi]

I also found that quercetin would keep me awake at night, and also overstimulate me during the day. Quercetin and caffeine both agonize the adenosine A1 receptors, and I certainly find you get caffeine-like overstimulation all day when you take quercetin. I took a dose of 650 mg, and this was not too bad in terms of insomnia and stimulation, provided I took it first thing in the morning, well away from bedtime. But higher doses of quercetin left me feeling too "wired".

Quercetin also slows down phase I detox, which was a problem for me. I'd guess that Quercetone would too?

Sushi

 

[camas]

Regular Quercetin has a negative effect on my sleep, for some reason. I wonder if Quercetone would do the same thing?

I find Quercetone to be more potent than any quercetin I've taken in the past. It does energize me, so I don't take it near bedtime. I'm using it with meals because it stops my flushing and bloating, and also cools me down. It's so nice not to feel chronically overheated.

 

[perchance dreamer]

It's so interesting that others find quercetin stimulating. From my internet research, I didn't find even one mention of that.

Five hundred MG as soon as I wake up gives me sleep problems. I don't know if a lower dose would actually help with allergies.

 

[Beefsterq]

Anyone know if Luteolin would work similarly to Quercetin? I know this is being used in the Autism/MS community and it is also a Flavonoid.

 

[camas]

Anyone know if Luteolin would work similarly to Quercetin? I know this is being used in the Autism/MS community and it is also a Flavonoid.

Yep, some masto patients are taking Dr. Theo's NeuroProtek product in which luteolin is the primary ingredient. Unfortunately it also contains a little bit of quercetin if you are trying to avoid it. I believe the quercetin is included to keep the liver busy, so that the body can better absorb the luteolin.

 

[Beefsterq]

Yep, some masto patients are taking Dr. Theo's NeuroProtek product in which luteolin is the primary ingredient. Unfortunately it also contains a little bit of quercetin if you are trying to avoid it. I believe the quercetin is included to keep the liver busy, so that the body can better absorb the luteolin.

So, have you heard anything positive/negative? Have they had any luck?

My main symptom is evening headaches that seem more like pressure in the front of my head, along with general fogginess. I wonder if this is a build up of histamines through the day, and when I go to sleep, it clears me out for the next morning from the sleep-fasting?

I'm considering either trying a bottle of Neuroprotek or getting some bulk Luteolin powder. I think my C+Bioflavinoids already has the quercetin, so no need to double up on that.

 

[camas]

So, have you heard anything positive/negative? Have they had any luck?

I'm considering either trying a bottle of Neuroprotek or getting some bulk Luteolin powder. I think my C+Bioflavinoids already has the quercetin, so no need to double up on that.

The handful of reports I've seen on NeuroProtek on the masto facebook pages have been positive. I believe nanonug has had a good response, too. Maybe he can jump in here and tell you about it.

Ironically, I'm the one who has seemed to have had the most difficulty. I noticed an marked increase in bone pain, but it may have been because I jumped in with both feet taking between 6-8 pills a day.

Most seem to be starting slowly. Here's the recommendation for kids from the 'Fans of Dr. Theo' facebook page. I imagine this applies to adults, too. One pill a day for 2-3 days, then 2 pills for 2-3 days, and finally 3 pills a day (2 morning and 1 at night). After a month or so you can double the dose for a few weeks to see if an increase is warranted.

 

[nanonug]

The handful of reports I've seen on NeuroProtek on the masto facebook pages have been positive. I believe nanonug has had a good response, too. Maybe he can jump in here and tell you about it.

NeuroProtek helped a bit but, to be honest, the H1/H2 combo provides the same modest relief. It is also problematic if one is taking medications that rely on the Cytochrome P450 2B6 (CYP2B6) - in my case it prevents the hydroxylation of bupropion (Wellbutrin). Given NeuroProtek's cost and interactions with other medications, I decided to stop taking it. Same goes for Quercetone and LutiMax.