Medication

Hi guy's

Was just wondering if most people got used to the medication they were on and had to be put on something else? and what happens if you reach the top so to speak (strongest medication)?

Thanks

Moys

[andreafm]

Hi Moys

Each person if different when it comes to the medications used. Where some might get on with one type and not really experience side affects, another person might take it and not get on with it at all.

I am on my third Immune Suppressant mainly because the other 2 didn't really help the symptoms/disease enough. Also, they affected my liver so badly so I had to stop the 2nd one anyway.

The third one I am on now still isn't helping all the symptoms and in particular the neurological symptoms. The ulcers and folliculitis have been helped on all 3 medications but it hasn't managed to bring down the inflammation in my blood and this is causing the damage to my brain/spine/vision etc.

I have been on the 3rd one since March 2012 and I see my specialist on Monday so am not sure where I will be going in terms of medication, from there.

There are some other more expensive and medications to try and these have to be prescribed by certain Doctors who have been given permission to prescribe them. As I understand it they have to be applied for and this can take some time.

I guess this would become more straight forward within the Centres of excellence.

Not sure what happens if you have tried everything possible, except it is more of what symptoms you can live with and what one's you can't, against the medications suggested and the side affects

I think if all fails and things are going really bad, that they would involve much higher doses of Steroids to get the condition under control.

Sorry I went on a bit and these are only my experiences...maybe others will see it differently or may even have come to the point of nothing working sufficiently.....I would hope they haven't though.

Andrea

[GUEVARA]

A logical question, and a very grey area! With Behcet's you are constantly having to second guess things. If you get symptoms after being on something for a while does that mean a) You are having a flare up? b) Is the medication not working? c) Am I just run down?

As meds can take months to work it is very hard to know.

I was on Steroids, Cyclosporin, Tacralimus, CCept (?) in various combinations for four years without any real settlement of the condition. There are several other of these immunosupressive drugs and different combinations and strengths can result in short medium or long term results There is no sliding scale in terms of strength, just effectiveness and the funny thing is what works for you, might not work for another and vice versa.

Beyond these drugs are biological agents such as infliximab (anti-TNF) drugs of which there are several. New drugs are being created all the time, and it is unlikely that you will ever be in a position to have tried everything! I have now been on a settled drug (infliximab and methotrexate)combination for six years, with great results, so fingers crossed and keep the faith!

Tim

[lesleyg]

Hi Tim

You are giving me hope - I have only been trying out all these drugs for two years!

Lesley

[lesleyg]

Hi Moya

I feel so sorry for you. Are you haveing both MTX tablets and injections?

Lesley