Today is Monday 18th December 2017.
Twitter icon
Facebook icon
RSS icon

Managing your medication

Write it down

  • Make a ‘list’ to take to all medical appointments and put in order of importance. Do not be embarrassed to read your checklist in front of your Doctor or Consultant or ask them if they want to read it. Anything you are unsure of, ask Doctor to repeat and write down if necessary. Sometimes it is worth taking a friend/family member with you to listen and maybe take notes for you. No one remembers everything they are told. Sometimes a Doctor will change their attitude in the presence of someone else – usually for the better.
  • If you ask for blood results by phone, always ask for actual figures rather than be told ‘they are normal’. Just because your results are within the ‘normal range’, they may not be normal for you. If you are unsure what results or tests mean, advice can be obtained via our forum. Keep a record of results.
  • Keep a running record of both results and Prednisolone dose.

Taking prescribed medication

  • Golden rule: When issued with a new prescription for different medication, buying over the counter remedies or homeopathic remedies, check with the Pharmacist for compatibility with what you are already taking before buying or using. Pharmacists know more about drugs than any other medic.
  • Very important to get Vitamin D checked, as amongst many other things, low Vitamin D will reduce your ability to absorb calcium. (Vitamin D check should be done before you are diagnosed with PMR, it is an exclusion test.)
  • Vitamin D & Calcium supplements should be taken with food or drink which contains at least a tiny amount of fat, e.g. milk in tea or coffee, as Vitamin D needs a bit of fat to be absorbed. Don't take Ca/vitD at the same time as prednisolone as they can interact.
  1. Early am – Prednisolone (with food)
  2. Mid am – 1st PPI (on empty stomach an hour before food)
  3. Lunch time – 1st Ca/vitD (with food)
  4. Dinner/supper time – second Ca/vitD (with food)
  • Do not take iron supplements or multivitamins containing iron within two hours of calcium as iron affects calcium absorption.

Taking your Prednisolone

  • If possible, when you wake up, take your Prednisolone with a cuppa and something to eat. Then snuggle down for an hour or so. This gives the Prednisolone time to work. It works best for most people if taken all at once, as early as possible in the day.

Reducing Prednisolone (Steroid)

  • Unless it is absolutely necessary for clear medical reasons as explained by your doctor do not attempt to reduce your medication while still suffering symptoms.
  • Golden rule: no more than 10% at a time. Most important once you get to 10 mg. Look on your calendar and decide which day you are going to take a drop. Then ensure you have as little as possible to do, preferably nothing, for the next four or five days. If you are going to be busy, choose another day to start the drop. If aches and pains start, wait it out for the four or five days. If the pain subsides, it was steroid withdrawal pains. If they do not subside, it is too soon, go back to the dose you were on and stay there for a while, then try again.
  • Remember the ESR, PV and CRP are only guidelines: other illnesses can make them rise and fall. Not everything can be put down to PMR and or GCA. How you feel is most important.
  • Prednisolone is not a cure, the aim is to get to the lowest dose which enables you to live comfortably. PMR & GCA have a life of their own, they come when they like and go when they are ready.

Other tips

  • If you are prescribed Methotrexate (Steroid sparing agent), make sure you also have Folic acid, but it must not be taken on Mtxe day.
  • Multivitamins usually contain ‘folates’ and if they do, should not be taken on Mtxe day either.
  • Many people on Methotrexate take it on a Friday, if they experience side effects, especially if they work.
  • Buy a Dosset Box for pills. They come in weekly and monthly sizes, with days of the week listed and times for taking medication.
  • When going abroad keep a spare supply of Prednisolone (Steroid), ‘just in case’, in your hold luggage but keep sufficient in your hand-luggage in case your suitcase gets delayed. Vitally important for GCA patients, but also for PMR folk as well, in case of flare or emergence of GCA. Consider taking the BSR/BHPR guidelines with you. Please see Research and clinical guidelines page (translated into local language as well as English – see https://translate.google.com)
  • Read the paper that comes with your prescription.
  • If you experience any side effect, tell your GP and fill in the Yellow report form available from your Chemist.
  • Always carry a card/booklet or wear a medicalert bracelet that says you are taking steroids.
  • PMR patients should have an annual eye check as Prednisolone (Steroid) can increase risk of cataracts. GCA patients should have six-monthly eye checks. Discuss with Consultant or GP.
  • Don't forget to let your dentist, optician or other medical practitioner know about ALL the medication you take, including over-the-counter supplements.
  • Learn to say ‘no’ when necessary. Just because you may look well, doesn’t mean you are well.
  • And anyone who says, ‘I wouldn’t be taking those tablets if I were you’ and ‘don’t you look well’ can either be smiled at sweetly or (preferably) given a good smack.
  • Put ICE (In Case of Emergency) into your mobile phone with the telephone number of who should be contacted. Emergency services will look for this first rather than trying to guess.
  • Think about the Lion's "Message in a Bottle" system. Follow THIS LINK for detail

 

Remember you are a person not a patient. PMR and GCA cannot change that fact.

With grateful thanks to PMR&GCAuk North East Support for giving us permission to copy and adapt this article from their Summer 2014 Newsletter.