IPF

[lmcfee]

I take Esbriet has anyone ever heard of taking hemp oil for IPF? and does anyone know how well esbriet works. I've been on it for 6mths. Seems to help with cough. On oxygen 24/7

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G'day Imcfee

My wife has IPF , diagnosed in May 14, she has tried hemp oil, last seen disappearing in the rubbish bin.

Some swear by it, but with IPF what works for some .... doesn't help others.

Br careful with Esbriet, it has some nasty side effects, nearly put one sufferer in the ground, although many are using it without too many problems.

Always consult your Dr before trying any meds, and if you are put on any,make sure your health does not deteriorate, and if any signs of problems hot foot it back to your Dr.

IPF is one mean disease and the last thing you want to do is to help it destroy your lungs with meds that do not assist you.

My wife was given 4 months to live in Oct 14 , however with a change in chemo, now on Mycophenolate, (Pill) as opposed to infusion (3 hours on a drip in hospital, fortnightly) the disease has slowed down.

My wife, Susan, is now on the transplant waiting list, her sats are in the low 80's, fvc is 63 and TlCO is 36, we do not have a long time left, main problems are coughing fits, now appear to be under control by taking Panadene forte (Prescription drug) again may not work for some sufferers. clubbing of both hands and feet (lack of oxygen) and tires easily, cannot drive anymore, and can only do light duties around the house.

I pray that my ramblings may assist you,

If you want more info try Inspire , just google it, it has numerous posts, by both carers and sufferers and you will obtain answers to most questions, but, please, be guided by your Dr, and if you are not satisfied , try another.

We wasted 4 months with one specialist, before finding the right one.

Best wishes and GOD bless

Will

[Sooki]

I have been on Pirfenidone for about 18 months now,did have problems to start and came of it for few months,now back on it and taking full dose,apart from lack of appetite and food not having much taste I am fine on it,my LFT's have remained stable,with little progression of the IPF,back to Papworth next week for my 3 monthly check up.I do use Oxygen for ambulatory reasons.I have not found any other meds helpful,keeping fit is the only thing.Many are prescribed Oromorph if the cough is bad.Sooki.Have you joined Pulmonary Fibrosis UK on facebook,there are over a thousand of us With IPF its a wonderful group.Sooki.

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Go to the Treating COPD with Cannabis group page and click the join button.