Life of a #rheum patient: It is indeed a juggling act

December 29, 2013

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We always keep complaining that most studies about Rheumatoid Arthritis (RA) focus only on the objective measures of inflammation & other factors rheumatologists are interested in. They hardly ever look at what a patient goes through, physically & mentally due to RA. Caroline Flurey & colleagues have just published a study that looks at Rheumatoid Arthritis from the patient’s perspective.

The study consisted of interviews of patients with Rheumatoid Arthritis to understand how they manage their day-to-day life & cope with their ailment.

The results have been startling. For us Rheumatologists, they are an eye-opener; letting us a sneak preview of what a RAer goes through. As a RAer, I am sure you can identify yourself as you go through the study results.

Here is what the study revealed. I have also added links about remedial actions.

1) Most RAers experience RA as a constant background reality, often being aware of its presence & the limitations it brings. Life is all about micromanaging & macromanaging their symptoms & daily life so that it remains in the background & does not interfere much with daily life.

2) Learning & developing proper coping strategies (details in resources at the bottom of the post) can do a lot good & help keep RA in the background. The aim of any rheumatologist is to keep the RA in remission (background) & minimize the chances of a flare.

3) RA can be & is unpredictable. It can intrude into life in the form of a flare without any notice. A flare can reach a magnum proportion by the time one sits trying to make sense of the fluctuation.

4) Once in a flare, coping strategies do matter. Some try to regain control on their own, some seek medical help right away while some Leave it as the final option.

5) One of the best ways to better manage a flare is to keep a self-help plan ready in consultation with your Rheumie. We have discussed this in the past here on the blog. Let it roll as soon as a flare is recognised & seek a Rheumie appointment in the mean time.

All in all, life of a #rheum patient is indeed a juggling act with a need to balance every aspect of life so as to keep RA & its impact in the background.

DMARDs/ biologics, positive attitude & the right coping strategies help in this regard.

In case, RA tends to overpower & come to forefront in form of a flare, there is no need to panic. Roll out the ‘flare plan’ immediately & push RA in the background again.

Tame your RA

Resources:

1) Study- It’s like a juggling act: rheumatoid arthritis patient perspectives on daily life and flare while on current treatment regimes. Caroline A. Flurey & colleagues Rheumatology (2013) doi: 10.1093/rheumatology/ket416

2) How to plan a house cleaning job with RA?

3) How to arrange the kitchen if you have arthritis?

4) Tips for painless cooking.

image courtesy: http://www.openclipart.org

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RAers, keep an emergency plan handy!

December 19, 2010

I’m sure all of you know that Rheumatoid arthritis (RA) is characterized by remissions & exacerbations. The aim of treatment is to keep your RA in remission & avoid flares as much as possible.

What is a RA flare?
RA flare describes an exacerbation of RA activity. It is the period when joints start hurting & are swollen.

What brings on a RA flare?
1. Change of weather. Sudden rain/ winter generally is responsible.
2. Physical exertion
3. Mental stress
4. Dietary changes. Sour food items tend to bring a flare in many RAers.
5. Stopping of medications.

How does a flare affect you?
1. The pain & suffering due to the joint inflammation.
2. If the flare gets prolonged, the dose of other DMARDs would eventually go up.

The best way to take care of a flare is to detect it early & treat is asap. You may contact your Rheumatologist & consult him immediately. However this may not always be feasible. The waiting list at your Rheumie’s clinic may not always allow you an immediate consultation.

Hence, speak to your Rheumie when you visit him the next time & get an emergency plan ready.

The emergency plan
1. An analgesic (NSAID) that you can immediately take when you sense a flare. Ask you rheumy about the number of tablets that you can take in a day, the interval you need to keep between 2 tablets. NSAIDs are never taken on empty stomach. Always eat something before taking a NSAID to avoid gastritis (acidity).
2. Ask your Rheumie if you can take a small short course of a steroid in case of a severe flare. You need to understand that steroids are not to be continued in the long run & you can start it & see your Rhumie asap. Speak to him regarding the dose & duration.
3. Once you sense a flare, put the plan in action immediately. The best way to take care of a flare is to treat it immediately.
4. Always take adequate rest during a flare.


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