Many lupus patients are prescribed steroids, as tablets (Prednisolone) which we need to take every day to keep symptoms managed. Alongside these many of us are also given PPIs or proton pump inhibitors to protect the stomach by reducing the amount of acid produced. These are often omeprazole, lansoprazole or other PPIs. Recently there has been some concern that PPIs may be too readily prescribed and that coming off them can be difficult. This is because you can get rebound acid when you stop taking them, so symptoms of heartburn can return.

These are very effective and useful drugs for those who need to take them, however there may be some disadvantages to taking them long term as they can interfere with the way minerals and vitamins such as B12 are absorbed by the body.

“In the beginning I had extreme gastric pain connected to my lupus and ended up trying three different PPIs before I found one that thankfully worked, I was also on a very high dose. However after taking them for many months I did come off the pantoperazole I was taking by reducing the dose very gradually. My symptoms did get worse each time I dropped the dose, but I persisted and I was able to reduce the dose and finally stop taking it. I now manage my symptoms by taking a very low dose of ranitidine.”- Lupus SLE patient.

To read more about taking PPIs and the concerns about over prescribing them you can follow this link to Inside Health, which has a report on it in January this year.

If you do want to reduce or stop taking PPIs, then please discuss this with your doctor first.

One last reminder for the event that we’re planning at the Green centre on World Lupus Day, Saturday 10th May 2014 12-4pm. We’ll be providing light refreshments, have the group’s mini library there, you’ll also be able to learn about recycling. Please remember to bring the aluminium that you’ve been collecting for the group too. This should be a fun event and a chance to relax and enjoy ourselves.

NB. Due to the legal complexities of running a small community group raffle, we are unable to hold a raffle on Saturday, 10th May at the Green Centre.

Despite the rain we had another successful coffee and chat in April, with eight of us coming along to share ideas, offer each other support and generally catch up.

For those of us diagnosed with lupus (as discussed in December’s talk by professor Davies on the brain), we may feel depressed and anxious at times. So you may be interested to know about a technique called CBT or Cognitive Behavioural Therapy. This is a form of talking therapy that involves changing the way we think about our problems. It has been shown to be helpful when coping with the emotional side of long term health conditions. The NHS choices website now have a series of audio guides called Moodzone which offer advice on how to approach common problems with mental well being, such as depression, anxiety and sleeplessness amongst others.

CBT is usually done on a one to one basis and if you feel you could benefit from this type of talking therapy then speak to your GP as it is available on the NHS as well as privately.

Thank you to one of our members for very kindly giving us these links to a couple of TED talks by Lissa Rankin MD, which she thought the group would be interested in. This is a bit about her:

“Lissa Rankin, MD is an OB/GYN physician, author, keynote speaker, consultant to health care visionaries, professional artist, and founder of the women’s health and wellness community OwningPink.com. Discouraged by the broken, patriarchal health care system, she left her medical practice in 2007 only to realize that you can quit your job, but you can’t quit your calling. This epiphany launched her on a journey of discovery that led her to become a leader in the field of mind/body medicine.

She teaches both patients and health care professionals how to make the body ripe for miracles by healing the mind and being healthy in all aspects of life, not just by promoting healthy behaviors like good nutrition, exercise, and adequate sleep, but by encouraging health and authenticity in relationships, work, creative expression, spirituality, sexuality, finances, and living environment. She is leading a revolution to feminize how health care is received and delivered by encouraging collaboration, fostering self-healing, reconnecting health care and spirituality, empowering patients to tap into the mind’s power to heal the body, and encouraging women not to settle for being merely well, but to strive for living vital, joyful, authentic lives full of “mojo.””

Follow these links to hear her talks:

‘The shocking truth about your health’

“Is there scientific proof we can heal ourselves?’