What do you, as a patient, need to know when starting a new medication?

What info do you think should be included in a patient information leaflet?

For instance, Leflunomide (Arava – DMARD) has a common side effect of an upset stomach but the accompanying leaflet has no information on how one can deal with it.

One of our members is on an advisory board for patient information leaflets and needs your views!

10 Replies

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  • I think it is important to know all relevant information about the med. I do not think you spare the patient anxiety by belitteling or withholding any information. As a patient suffering from a chronic disease you need to know the following in my opnion: statistics about the effects, side effects, long term efects on body organs, how much research done, how long in use. The doctor needs to trust the patient to come to her own conclusion concerning the med. He or she cannot do this without the help of the doctor. All in all I do not think anyone should start with a new med before it feels right for you. This is part of the healing process, its your body and you need to feel that you have some control in a situation where the doctors have no meds to offer that would cure the disease. Leaflets with information without the personal help of a doctor seldom help the patient to reach a decision that feels right. Too often you just hold your breathand jump into the unknown hoping for the best. This is not the way to treat your body in AI diseases where stress is an important player in the disease.

  • I agree with giving some idea of how one might tackle the side effects ie: for constipation increase water intake, fruit and veg - could take senna or similar on advise of your gp/consultant. It's always a good idea to suggest a time of day to take medication- always a dilemma or if splitting the dose might elevate side-effects etc.

  • for me, information about how common the side effect is really useful when deciding whether to try it on not.

    I'm a bit worried about having advice on how to treat side effects in a leaflet, as the leaflet can't know what else you are taking. Better to send someone to the pharmacist, I think.

  • I think when it's best to take a drug. I was surprised when I got my first prescription for methotrexate, there was so much information with it including a pink booklet, but no information on what time was best apart from once a week. I requested information on this forum and was given good advice to take it in the evening after dinner. I take many different drugs and in general take them with or after breakfast except Lansoprazol and Alendronate Acid.

  • I think you need to be clear about what you can do about side effects, which ones you should try and put up with, and which ones (and when) you need to report to doctor, or to stop the medication. Also be clear about contraindications - either other medications, or other medical conditions. Whether the medicine should be taken regularly by the clock, regularly every day or just when needed, and what to do if you miss a dose or take too much. I know some of that should be on the prescription instructions but it would help to know whether a medicine is generally intended to be taken every day or just as required, as some medications do take time to build up in your body (so taking them intermittently isn't that useful).

  • RE Leflunomide it really should be mentioned how it affects the appetite. I lost a huge amount of weight before it dawned on me I was eating a lot less.....if the leaflet had mentioned it I would have made more of an effort to make sure I didn't keep missing meals!

  • I hope I get that side effect!! One week in...

  • Hope you get on well with Lfl.....but save your pennies.....It gets really expensive going from size 14 to size 10 trouser!

  • The problem is that I bought a bunch of smart work clothes when I was 20 lbs less than I am today and they are all collecting dust in my wardrobe. I hope you are right and that I will get more wear out of them! :)

  • Given that a big part of the cause of RA is leaky gut, anything that adversely affects the stomach should be highlighted in red, bold and caps.

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