Informal Research

In this section you are invited to post short observations (for example, the value of apple vinegar); post attributed links to interesting materials (for example, an article about using meditation to control pain); or to post a personal experience (for example, hot water and hand pain control).

Send your own suggestions to This email address is being protected from spambots. You need JavaScript enabled to view it. and we will publish them here.  Let us know if you want your name attached to the particular suggestion.

DAS28


              The (Disease Activity Score) DAS 28 assessment tool is recommended by all major rheumatology professional organisations. Twenty-eight joints are squeezed and the number of tender and swollen joints is calculated. The target joints are the 20 joints in the hands, one in each shoulder, the wrists, the elbows and the knees respectively. The thing is few rheumatologists apply the assessment on a regular basis. Patients can do this themselves before each consultation. On the UK iTunes site you can download an app called "Know your DAS". This is a clinically valid tool and easy to follow. A good DAS score should be read in conjunction with your blood readings for ESR and CRP, your own assessment of pain, your own assessment of wellness. The DAS score goes from 0 to 28 where a score of 2.6 signifies very little disease activity. Remember DAS does not measure fatigue, rotating pains, flare intensity or the development of co-morbidities.




Inflammation and Food


              Dragon Claw has a lot of information detailing how changing your diet can help greatly. See the video tab above and Diet section by pressing the Dragon Claw blue logo above. I have found four food items to be very calming of the gut and which also provide a well being lift. A teaspoon of Chia seeds on cereal and in salads is a great idea. Pure oats (porridge) have a wonderful soothing effect and it also provides low GI energy throughout the day. Apple cider vinegar two or three times a week (one tablespoon per dose) may be a little hard to drink but certainly improves well being after a couple of weeks. The above three items are well supported in the literature. Honey seems to have equal numbers of detractors (its a sugar) as it does supporters (there are many other useful things in honey). Honey from the supermarket is useless as it has been filtered and heated. I only buy honey from a honey producer i.e. raw and unprocessed. It certainly adds to my sense of well-being.






  Living Longer With Better Treatment


                  RA Survival Rates Better A Quick Summary Advances in drug development for rheumatoid arthritis over the past 15 years have improved survival rates for patients, researchers say. The study appears in the June 23, 2016, Annuals of the Rheumatic Diseases. In a population-based cohort study, researchers reviewed how standard rheumatoid arthritis treatments impacted patients with this condition and compared the results to similar patients who did not have rheumatoid arthritis. They were also interested in whether other co-morbidities impacted survival. Led by Yuqing Zhang, M.D., professor of medicine and epidemiology at Boston University School of Medicine, investigators determined rheumatoid arthritis patients treated after the advent of new drugs and management strategies had a longer survival rate than those treated earlier.



 Prednisone and the Body Rhythm

                  Many of us note an increase in pain and stiffness first thing in the morning and some times late at night, especially if the weather is cold. I have found that taking the bulk but not all of my Prednisone dose late at night means that I am less sore in the morning. There seems to be more research around suggesting that the effects of rheumatoid disease is highest at about 1 AM and least at about 1 PM. This would make sense if late dose Prednisone is effective. I understand that in the USA doctors can now prescribe time release Prednisone and Prednisolone which maximises the dose release at about 1 AM. Check it out for yourself or read the Eular Journal.






Drug - to - Drug Interactions


                  Many people experience side effects of their medications. If you take two medications then additional interactions may occur as a result of the two sets of chemicals interacting with each other. If you are taking many medications as most of us do then the opportunity for unwanted side effects increases considerably. The Resource button (above) on this site lets you select a tool that enables you to investigate drug-to-drug interactions, just one drug to another. I do not know of a site that caters for multiple drug assessments as this is incredible complex in terms of chemistry. For myself I have noticed over the past two years that whenever I took my set of drugs (set of 3 in the morning and 3 in the evening) I had a real 'downer' immediately after for about 90 minutes. I actually felt quite unwell. I did not understand why. Recently, I have started separating each drug taken by at least 20 minutes and the 'downer' reaction has almost gone. Great!





Avoiding a Problem

                  Many tablets look similar. One milligram Prednisone looks very similar to a five-milligram tablet. Solution: Mark the five-milligram tablet with a felt marker pen. A dot will do. This can be applied to other look alike tablets to avoid over and under dosing.






Drugs Loosing Efficacy

                  Are you taking on a regular basis a set of medications. Over time are you aware that things seem to change? Consider this scenario. Jane takes 8 mg of Prednisone, six Panadeine Forte and a proton pump inhibitor. She has been doing this for three years in addition to a daily methotrexate injection. Towards the end of the third year her pain levels become a little unstable. Her partner notices mood changes and observes that Jane is short tempered. What does this mean? Running a daily journal indeed demonstrates this instability. One day Jane forgets to take her Forte tablets and has a severe pain increase. So much so it reminds her of the bad days. Now, the only person who can observe and understand these patterns is Jane. Taking the evidence to her specialist the discussion revolves around a loss of efficacy by Forte or by Methotrexate. A blood test reveals that the MTX is working fine so the culprit is the Forte. The key issue is to observe yourself closely.




More Than Blood Tests


                  Most clinicians rely on your blood tests. Great! Many of you will realise that while your blood markers like CCP may be low to normal you still feel fatigued, still have pain and still can't live a normal life. Blood results tell only part of the story. Learn to articulate your own observations and perhaps challenge your specialist by asking: why do I still have flares? Why are the mornings and evenings so difficult for me if my blood work is terrific? Why do I have other support drugs if the main drugs like Methotrexate or my Biologic drug have already rendered by blood as "normal". Why am I developing secondary conditions, called co-morbidities, if my blood is ok? If you are classed as moderate to sever with RD, Lupus or JIA then evaluating the "why is this happening" against blood result will force a constructive dialogue. As patients we pay the fee, we pay the price and we take the risks so why not push the point?






 Prednisone and Prednisolone


                  Many of us are on one of these drugs. They are similar but Prednisolone is more slowly metabolised by the liver. Long-term use of these drugs has very bad impacts for bones, teeth, eyes and other parts of the body including skin thinning. What few clinicians seem to know is that taking Prednisolone at around 10 pm is significantly more efficacious that in the morning. There should be less stiffness and soreness in starting the day. This was noted in 1964 by De Andrade et al in the Annals of a rheumatic Disease. This was also confirmed in 1983 and again in the 1990's.






  Observe the Cycles


                  I suspect we have observable disease cycles which once detailed may help manage the condition. The following are my hypothesis but try and apply them to yourself. FIRST the medications you take introduce weekly or monthly variations in energy, wellness and fatigue levels. Changing drug administration over a twenty-four hour period can iron out the ups and downs. For example, splitting the daily dose of Prednisolone between morning and evening instead of loading it all in at the one time. SECOND The typical major cycle is: a) crisis stage where you are battling to get a grip on the condition, on your life and on the side effects of all the drugs being taken. This can last up to eighteen months. B) stabilisation stage where your drug regimen has started to introduce a degree of control punctuated by set backs and flares. C) management stage where you have reached a stage of predictable functioning, based on your reduced but established set of medications.






 Fatigue and Pain


                  I have found that hot showers provide wonderful relief. Placing hands and wrists in to hot water for ten minutes often helps a great deal. Using cold water is not a good experience.





Better Sleep


                  Suggest you do not take Prednisone before going to bed as it has an energising side effect. Take it, if you have to, at around 4 PM so that by the evening time you are more relaxed.






Relieving Leg Pain


                  In the early stages of RA people often get leg pain when they go to bed. Elevating the leg via pillow often helps, as does keeping the leg warm. There are some commercial devices as well. One example is by Healthy Heels® Leg Elevation Pillow and Fitted Bed Sheet - Includes One Leg Support Pillow and One Fitted Bed Sheet for Stationary Leg Elevation - Reduces Swelling, Pain, and Varicose Veins (Queen) available on Amazon.




Pain Management


                  I do not eat much in the way of wheat or corn based products. This means very little eating of cakes, cereals and breads. For example, while I like bread I find I feel a little unwell the next day if I have more than a slice. Over five days I have eaten more than a loaf of whole meal bread. I noticed that my pain levels increased significantly, so much so that I need extra medication. I did some research about wheat products, the small intestine and rheumatoid disease. An aggregation of the current thinking can be found in a book: Lagace, J - The End of Pain, Scribe 2015. As a direct result of this research I determined that I may have a gluten intolerance threshold that, if passed, aggravates my rheumatoid and causes pain. To test this I removed ALL gluten from my diet and within five days was back to my normal self. The worst of the pain had gone. Eating the odd small amount of gluten product is OK but I need to be careful. Perhaps this may help you too.






Dry Eyes


                  I have found dry eyes to be a continuing and troublesome curse. Best solution to date that seems to really work is over-the-counter Lacritec capsules containing a mixture of Omega 3, 6 and Gamma Linolenic Acid. I find this product effectively controls sore and dry eyes.






Dry Scalp and Dry feet


                  I have found most moisturises useless. RD and dry skin seem to go together after a while. I have found Eczema and Psoriasis Cream by a company called MooGoo much better than simple moisturises.


Very Dry Mouth


                  Oral Balance by Biotene is an over the counter medication in gel form used to moisturise your month. I have found this very useful as RD and the use of Prednisone reduces saliva and increases tooth decay. Prednisone also demineralises the teeth slowly over time.




Prednisone


                  Reducing this drug dose after the first five days has to be approached by tapering down the dose. It has taken me over fifteen attempts over four years to reduce from 40mg per day (around 80 days) to 3.5 mg per day. Reducing by 0.5 mg per fortnight works quite well till you reach about 10mg. From this point things can be quite sensitive due to 1) the amount of cover your main drug is providing; 2) your state of health; 3) the type of other drugs you may be on such as Oxycontin and 4) your motivation. There is a video about this in the video library. How have you managed to reduce your intact of Prednisone or Prednisolone? Anyone else with a view?




Drug Interactions with Food

                  If you are taking Prednisone then it is better that you do not eat grapefruit. A chemical in the fruit reacts negatively with the drug. Try looking up 'grapefruit and drugs' on the Internet to get much more information.




 Twelve Commandments - Severe RD and Lupus


  1. Become your own expert in your condition
  2. Listen to your body; assess and observe your condition regularly; plan your day accordingly.
  3. Be absolutely disciplined with your prescribed drugs and do as your specialist advises.
  4. Drugs interact with other drugs, foods and with toiletries, watch and monitor this.
  5. Exercise regularly and carefully within your physical envelope.
  6. Use food to moderate your condition and limit the impact of drug side effects.
  7. Share your findings on exercise, drugs and diet so others may learn.
  8. Include your carer in all your research, if they are interested.
  9. Develop a health journal, monitor drugs, pain and wellness.
  10. Make sure you have a care plan for yourself and action this with the help of your GP.
  11. Meditate often and live in the moment.
  12. Try not to cope with pain alone but let others who care know.






Voice Changes


                  I have noticed a warning when a flare is about to occur is hoarseness in my voice. If I slow done, check my medication dosage is correct and rest the flare will be mild.




Actemra and Dry Skin


                  The biologic drug Actemra is wonderful but causes dry skin. Cheap basic 'ultra dry repair' style skin cream manages the problem but only just.




Acetic Acid and/or Vinegar


Rheumatoid disease sufferers often get strange little rashes here and there. The GP tends to prescribe a cortisone based cream. I have found that rubbing a small amount of white vinegar on to the spots at bed time over a few days eliminates the rash. Try it - cheap, simple and easy.

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