Methylphenidate

Why is it difficult to get some brands of methylphenidate?

We are writing to all patients who are being prescribed methylphenidate. As you probably know, there are problems getting stimulants for ADHD because of low stock levels. It seems that demand has increased much more than supply generally. Some increase in demand may have been exacerbated by the shortage of another stimulant, lisdexamfetamine. There is not a ‘manufacturing problem’ for methylphenidate- it is a failure of the drug companies to anticipate the rapidly rising level of demand. Wholesalers in the UK are still getting supplies but may have to wait for them and then see them bought up very quickly.

Immediate release methylphenidate (generic) is also generally still available.

What should I do?

The first thing to try is to ask for your prescription about a week before you run out so there is time to get supplies. If your pharmacy is not confident that they will get supplies within the week, please try phoning around several chemists, preferably from different chains (they have different wholesalers). You may find that asking a neurotypical person to do this for you avoids some of the frustration! Please do not accept smaller quantities (i.e. less than one month) because you will not be able to take your prescription to another pharmacy for the rest, and the problem will come round again quickly. Unfortunately, we cannot prescribe more than one month’s supply because that is the rule for controlled drugs (and stockpiling would make the supply problems worse).

If no pharmacy can get the exact dose you need, it is probably best to swap to an equivalent brand at the same dose, rather than to make up the dose with lower doses of the same brand. We would prefer to know which brand you can get, rather than issue a ‘generic’ prescription- the ‘generic’ price to the NHS is nearly three times the cost of Affenid and about twice the price of Delmosart.

Once you have phoned around to find out what you can get, please ask the chemist to reserve it for you, then email us at Jerichohc.prescriptions@nhs.net to ask for the exact dose and brand available and the postcode of the pharmacy that has it.

Can I swap to a different drug?

Some pharmacists have suggested to patients that they request ‘an alternative’ drug rather than brand. This is very unhelpful. Different drugs have entirely different metabolism- they are not simple equivalents. And there should be enough options of different brands of methylphenidate, without having to change drug. Also, the main alternative is lisdexamfetamine, which is even more difficult to obtain.

Lisdexamfetamine

Why is it difficult to get lisdexamfetamine?

We are writing to all patients who are being prescribed lisdexamfetamine (Elvanse). As you probably know, there are problems getting lisdexamfetamine, and these problems are likely to continue for months. Our understanding is that Takeda (drug company) are still making the same amount of lisdexamfetamine in Europe, but demand has increased, so it keeps being sold out rapidly. Wholesalers in the UK are still getting supplies but may have to wait for them. This is different from the problem in the USA, which is due to the US Drug Enforcement Agency deliberately limiting the sale of medicinal ‘controlled drugs’ to reduce the risk of diversion to the black market (with the ironic consequence that it may be easier in the USA to obtain prescription drugs illegally than to obtain the same drug on prescription).

What should I do?

The first thing to try is to ask for your prescription about a week before you run out so there is time to get supplies. If your pharmacy is not confident that they will get supplies within the week, please try phoning several chemists, preferably from different chains (they have different wholesalers), and then email us to say what you can get and from which pharmacy. You may find that asking a neurotypical person to do this for you avoids some of the frustration! Please do not accept smaller quantities (i.e. less than one month) because you will not be able to take your prescription to another pharmacy for the rest, and the problem will come round again quickly. Unfortunately, we cannot prescribe more than one month’s supply because that is the rule for controlled drugs (and stockpiling would make the supply problems worse).

If no pharmacy can get the exact dose you need, it is possible to have 2 x 30mg to make 60mg or similar combinations of 20mg, 30mg or 40mg doses to make up 50mg, 60mg or 70mg. However, the lower doses are also in and out of stock too. It costs the NHS much more to have two low dose capsules than one high dose (e.g. £30-£50 per month more). It is cheaper for the NHS to supply one capsule of a higher dose, such as 60mg or 70mg, and use less of it, than to double up on lower doses. You can open a 70mg capsule and dissolve the contents in 70ml of water, then take 60ml to make 60mg or 50ml to get 50mg. Similarly, you can dissolve the contents of a 60mg capsule in 60ml water and take 50ml for 50mg or 40ml for 40mg. The capsules are designed to allow patients to open them and dissolve the contents- it will not reduce the effectiveness of the drug. For someone unable to get 50mg, our first choice would be for them to get 60mg capsules, then 70mg, then 20mg+30mg, then 30mg+30mg. If you phone around to find out what you can get, and then ask the chemist to reserve it for you, then email us Jerichohc.prescriptions@nhs.net to ask for the exact doses available and the postcode of the pharmacy that has it.

Can I swap to a different drug?

Some pharmacists have suggested to patients that they request ‘an alternative’. This is very unhelpful. Different drugs have entirely different metabolism- they are not simple equivalents. Different people on the same dose of lisdexafetamine may need different doses of other stimulants, even dexamfetamine. Although across the whole population, 50mg of lisdexamfetamine is similar to 5mg three times a day of dexamphetamine, this is not true for every individual- the speed of metabolism of lisdexamfetamine varies a lot from person to person. Changing drug would require seeing a specialist to decide on which is most appropriate (usually methylphenidate) and then starting dose titration from scratch. This would mean a month or two of not necessarily being on the right dose. Even if you wanted to go through this period of instability, most NHS specialists already have very long waiting lists- by the time you would be seen, the supply issues should have resolved. In addition, some of the other drugs for ADHD are also subject to stock shortages. Some are not recommended for NHS prescribing locally unless there are particular reasons- for example, we would not normally prescribe dexamphetamine to someone who had not tried methylphenidate. Some private psychiatrists do not know (or care) about local NHS recommendations.

Some patients (about 40%) find lisdexamfetamine suits them better than methylphenidate whatever the dose (although in about 20%, the opposite applies, and about 40% find them equally effective). Some patients have already tried other medication and changing back may not be helpful.

Therefore, it may be best to stick with lisdexamfetamine even if you end up having to go without for a few days until stocks arrive.