u/Semicharmedtee

Raising ketotifen has given me really bad muscle pain and joint pain and stiffness. Hugely affecting my mobility.

I was in a flare before starting which was causing some pain but wow it’s gone 0-100.

I have increased from none at night and a tiny amount in the morning to a tiny amount morning and night. This has been enough to cause this.

Nights are excruciating, mornings bad, afternoons marginally better, evening ok then night bad and repeat

I’m 7 days since the last increase. I’ve read so much about worse before better but then some people have this for months and it gets no better.

Help!

Can people tell me what type of vitamin C they take which helps. And what form etc.

Can you take too much?

I find chewable vitamin C hits really quick and makes me feel overall less inflamed. Even my recent muscle aches have calmed down. Brain fog clears.

Is it more effective as chewable rather than a tablet you swallow?

I have read about glycine helping pain but can it make it worse? I have had muscle pain for a different reason, before taking it but having taken 1g for the last 5 nights I have been in so much bone and muscle pain all over.

I have histamine issues which I take meds for.

I have histamine issues and mast cell havoc like a lot of us. A lot down to my double comt and detox capacity, unregulated cbs and one copy MTFHR. I’m on antihistamines long term.

I took inositol for a month - myo inositol 500mg morning and night - and felt better at first then started feeling so amped up and irritable and worse histamine. A bit like when I tried hrt.

Found it increases ovarian activity so it was pushing my hormones up and also increases serotonin and neuro transmitters. So ultimately I was backlogging all the dangerous stuff for me.

I came off after a month and felt a huge crash. Now I’m continuing to feel awful and body pains and muscle pain and worse hormones and just everything has gone downhill.

Just looking for any comment or reassurance or insight really. Thanks

Has anyone taken ketotifen even at a tiny dose and experiences bones and muscle pain and extreme stiffness and weakness.

I have begun a small dose at night. I already take in the morning at a small dose and have for some times but due to feeling bad after coming off the night dose some weeks ago now, I have reinstated.

Body pain in the night
Muscles and bones hurt and feel about 90yr old
Wake with body pain and stiffness
Afternoon tired enough to sleep
Irritable
Foggy and groggy

The worst is feeling so immobile.

Short version: can ketotifen cause this kind of flare. At such a tiny tiny dose. Bone pain, weakness, muscle pain. Severe.

I’ve been on ketotifen for two maybe three years at 1mg morning and 1mg night. I’d gained so much weight during that time and had been doing really well since getting my Estrogen under control.

I’ve been weaning down using tiny scales for the last year and doing well. I remain on 12% of that dose in the morning and up to 6 weeks ago I was on 8% of that dose at night.

I had a run of things - tried inositol supplements for a month - increased my Estrogen and therefore histamine. Also increased serotonin unknowingly and wasn’t compatible with me genetically. Came off it and flared up my nervous system.

Then did some gardening, had a colonoscopy (routine family history appt) and hit a bad point in my cycle which was more pronounced and I started flaring badly with body pain muscle pain. Hurts all night and is excruciating. Stiff and in pain all morning. Eases afternoon/evening then repeat.

Sooo, I went back on my 8% of 1mg ketotifen two nights ago. Jesus. Have woken with awful sore throats the last two days. Pain bad yesterday then today I wake and my whole body cannot move. Beyond stiff, painful,weak muscles. Bedridden. Need help to even sit up in bed.

Looking for help and reassurance. Is ketotifen flaring me having gone back on such a tiny dose after being off it for 6ish weeks? Even though I’m still on a morning dose?

I’ve recently been introduced to Ray Peat and feel the theories explain a lot of my life.

I’ve just started baby aspirin in the morning. After about 3 hours I felt really good. Why?

I have Estrogen dominance, slow detox capacity (slow comt genes) which impacts the rate I get rid of neuro transmitters and hormones. I struggle at times in my cycle when Estrogen is rising and high but also when it’s low as I’m slow to process it and I then have issues with inflammation.

Because of this I have histamine issues and mast cell problems. But react ok to aspirin.

The aspirin cut my whole body pain out which I’ve recently been flaring with.

Is one baby aspirin ok to start with and then could I take morning and night?

Please be kind. New to this.

I spent a year weaning off ketotifen due to weight gain primarily. I generally felt mentally better the lower I got. Less sedated a guess.

I ultimately came off the night dose about 4 weeks ago having gotten down to 10mcg per night and 15mcg in the morning.

I’m still on the morning dose but now in the worst of flares. Bone and muscle pain which is widespread. Feels hugely inflammatory and I’ve never ever had this aspect of mast cell and histamine.

I know it’s related as it ramps up as soon as I eat.

I’ve gone back on the night dose last night at 10mcg and I feel even worse today. Help!

Can you take glycine supplements when you have an unregulated CBS gene - basically would it create too much ammonia and cause me an issue.

I’ve taken it before and lately and it really seems to help with neuro inflammation. Maybe inflammation generally.

But I don’t want to make things worse.

I also have one copy of MTFHR and double comt.