Consultant today

Everyday living
1

Hi

Hospital appt today consultant was surprised at how quickly the disease has progressed. From dx 2 years ago now full time wheelie. But hey, s**t happens. He wants to put me on a course of monthly IV treatment for a year. The drug is an old drug called Cyclo something, but I can’t remember the rest. Does anybody know what drug he’s talking about and anything about it? Im PPMS if thats relevant or not I don’t know. Thanks, Steve

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Hi Stevie, just googled in and found Cyclosporine.

Here’s a link:

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601207.html#why

It’s an immune system suppressant. This is a group of drugs that are sometimes used for MS to try and stop the immune system being so active in the central nervous system… so they are trying to stop your immune system for further attacking the damage the MS has caused (that’s what happens in auto immune conditions like MS… your own immune system is attacking you).

As you know from PPMS board, I’m also PPMS and haven’t heard of this type of drug being used for PPMS… but will be interesting to see if it helps. It’s worth giving it a go!

Best of luck with it and please do report back to us on PPMS board. Thanks.

Pat x

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Hi Pat

How you doing mate? Thanks for the answer, will look at link now. Neuro says I need to go in for 2 days of scans and mri and start treatment in September after my holiday. Bit nervous being immuno surpressed but needs must I suppose. x Will keep you informed. x

4

Hi

Consultants secretary just got back to me-drug is cyclophosphamide.

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I was just about to say that! It is a drug used in rheumatoid arthritis - also an auto immune condition like MS. Disease-modifying anti-rheumatic drugs (DMARDs) Bea

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Thanks Bea, have you taken it?

Steve

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Hi Steve, Sorry no I haven’t, but aware of it through work. It’s a fairly strong drug. Found some info on arthritis UK website. - maybe worth having a look?although I am sure you have already googled! The three main ways of taking cyclophosphamide are: intravenous injection (injection into a vein). low doses of tablets (usually taken once a day) high doses of tablets taken less often (e.g. once every 2 weeks), although this method of administration is very unusual. Your doctor will discuss the options with you. The dose will depend on your body weight and may change depending on how you respond to the drug. Intravenous injections need to be given in hospital and your doctor will tell you how often you need to have them. Cyclophosphamide tablets should be taken with or after food (preferably in the morning or early afternoon). They should be taken with plenty of water and swallowed whole (not chewed). Cyclophosphamide doesn’t work straight away. It may take 6 weeks or more to produce an effect, depending on your condition.