Methotrexate Booklet

[pingu]

I have my little purple booklet and now my consultant tells me that my booklet should go everywhere with me incase I have an accident then medical professionals can know that I have a potentially compromised immune system.

First thing is, do I need to take it everywhere?

How "compromised" is my immune system?

This thread was going to be titled whats purple and in my pants and goes everywhere with me but!

[Fred]

Not something I've heard of. I don't have anything to carry around whilst on Stelara, I just tell them if needed.

Yes Methotrexate can compromise your immune system as can just about all treatments for psoriasis. having said that your immune system is already compromised because psoriasis is an autoimmune disease.

As for how much it is compromised by using methotrexate I don't know, but it is used for chemotherapy and to induce an abortion so I would say we all have to make up our own minds on what treatment we want to use and compare the trade off: Psoriasis V Compromised Immune Sytem

Some people wouldn't touch the Bio's with a barge pole because they weaken your immune system, but I'm happy to be free from psoriasis and I've not noticed any problems. But even though I'm happy to use Bio's there is no way I would use methotrexate again even if they told me there was nothing else.

I would say as long as you are happy with the results, you are being monitored properly, and you can handle it, then enjoy and don't get to hung up about how compromised your immune system is.

Back to your little book, I hope someone else knows more and will answer as it's a new one on me.

[mataribot]

Just tell everyone that your superman and that you take a small dose of kryptonite once per week so your not so powerful...

In all seriousness, don't they acess to your medical records in an emergency?

[Bill]

Didn't you have an argument with a clinic about not releasing clinical information Pingu? Now your doctor suggests you carry a medic alert and you wonder whether you should do so? How long do you think it might take to get your medical history in an emergency situation? Dont quibble.

[D Foster]

We have a national health service without the national part, hospitals don't speak to another and the computer system in the main does not either. I did not have anything when I was on MTX however somewhere I do have a card for the Stelara and they gave me a comprehensive pack with all sorts extremely good info, this was pre BUPA takeover of the Stelara when another private company did all the supply ,they also gave me the address of an internet site called drugs dot com to go on to if I needed to check on what other drugs do or do not go with it.
As long as you keep an eye on the bloods then MTX is fine , my doctor is on it and he is quite happy with it and I was on it for a long time with no long term problems.

[Fred]

I've had a look into it and it does seem like a good idea to me. It's designed to keep everything in one place and shows your regime plus test results.

As well as having your name, date of birth, and the hospital treating you, it will also be updated by the following as you use them.

#1 Dermatology
#2 Bloods
#3 Pharmacy

So you should take it with you for those, I have just read a case where a Pharmacy refused to issue the Methotrexate without the book.

It's also recommended you take it with you to your GP or for any hospital visits. Though not compulsory as they should your information on the computer.

But the idea of the book is to have the information readily available to the three mentioned above, and they can all make additions as they see fit. It will save any confusion between the three and in the long run could save you a lot of hassle too.

I wouldn't say you have to carry it around with you all the time, but making sure you have it for the three mentioned is a good idea.

For me the inconvenience of taking it with me to the above three is worth it, and it would be a good idea to roll this out for all treatments that need strict monitoring.

I have a 45 page PDF if anyone wants to know more.

[pingu]

Thanks Fred

@Bill, I don't believe I had an argument with a clinic about not releasing medical information, it was probably a discussion about them not being able to access my records? The query was not to quibble about the information etc as I am not overly protective of my medical details it was a query as to what other people find and what its purpose is. As always what Fred says makes sense and although I had a booklet previously it was not updated when I was private but now with the NHS it is updated.

As Dave says our National Health Service is not always that national. Only a few months ago I could only use the hospital my dermatologist was in for bloods as the trust was in two halves and neither could see the others records. They seem to have fixed that as I can now get my bloods done at any clinic which makes my life easier and the consultant can access those records.

[Sammikins]

I had a book for Methotrexate to record blood results in so you have it handy if you need to go to hospital, I was also given a card to show that means the hospital have to see you within an hour! Makes you wonder why? 
Also would just like to share this with Methotrexate users....I've been seeing a gastroenterologist for tummy problems and he told me Methotrexate is banned in Italy ( he was an Italian doc but in uk) and then he went on to tell me how Methotrexate can give you a lot of scar tissue on your liver that doesn't show up in the blood tests! Dermatologist don't tell you that so you think you're ok if bloods are fine but damage is still being done that we can't see! Just thought you peeps should know this

[Fred]

If you are looking for new posts in this thread they have been moved here: [split] Methotrexate Booklet

Here is a reminder of the first post in this thread:

I have my little purple booklet and now my consultant tells me that my booklet should go everywhere with me incase I have an accident then medical professionals can know that I have a potentially compromised immune system.

First thing is, do I need to take it everywhere?

How "compromised" is my immune system?

This thread was going to be titled whats purple and in my pants and goes everywhere with me but!