Hi All those with RA.
Many of you on this site have recently been diagnosed with Rheumatoid Arthritis and your Medics are yet to find something to control the disease activity levels. That stage is very painful and very scary. This post is not about recommending what is right for you, or to encourage anyone to ignore medical advice. It is about hope for the future.
My diagnosis came in 2006. Before 2009 was over I had had both hips and both knees replaced. In 2010 a surgeon was ready to start on a further 4 joint replacements on my shoulders and elbows. In those days I was on Leflunomide and each opp. required me to stop taking it for 7 weeks. My disease was more destructive than my surgeon had ever seen and in 7 weeks off my meds. I could destroy another couple of joints.
So how have I got to the point of not taking a single prescribed drug. I used to take 10 different prescription drugs at a time and my GP wanted me to add at least another 3 to the list!
Many drugs were tried, but nothing, which I could tolerate, brought the disease under control, until I started on infusions of Tocilizumab. My blood results delighted my Rheumatologist, but left my immune system suppressed to the point where I dare not go over my doorstep for 14 days after my 4 weekly infusion. In the other two weeks, especially in the Winter, when I had to go to my GP's for blood tests, or visit the Hospital, or even go food shopping, I took to wearing a face mask, because I was so prone to viral infections. The cold that took a normal person 7 days to get over took me typically 7 weeks to get over and as the Hospital would not administer my infusions when I had a viral infection, my infusions were rarely given at 4 weekly intervals because I was so rarely well enough.
Virtually every time I saw my young Grandsons and their friends I came down with yet another viral infection. My RA was under control for the first time in over a decade, but my quality of life was very poor.
Due to my elderly Mother being brought to death's door by a combination of prescription drugs and only improving when she was put on Palliative Care, given 2-4 weeks to live and taken off all her medication except pain relief, did I began to question if I really needed all my 10 drugs. Off her Meds. my Mother was free of leg ulcers for the first time in over a decade. Off the Meds. she recovered from septicemia and lived for a further 2 years.
In 2013/2014 I had some severe reactions to prescribed drugs and decided to try to figure out which drugs I really needed, as many of them had been prescribed to try to alleviate the side effects of something else. If I had agreed to take everything my GP was offering recommending and suggesting I would probably have been taking at least 13 different drugs at that point. Gradually over a period of 2 years I weaned myself off the medication. Some of the withdrawal symptoms were truly awful, but I kept going.
In many ways, I cannot claim that I am cured merely that there has been a dramatic improvement. I still have Chronic Fatigue and Fibromialgia, in addition to my RA and AS. but I am certainly no worse. My damaged joints still hurt, but usually less than when I took 5 Tramadol a day. The bonus is that without the side effects of my Medication I have no need of the Proto Pump Inhibitors or the tablets to reduce my blood pressure and I don't need the Statins either.
Without being told to do so by my Rheumatoid Consultant I would never have had the courage to stop the Tocilzumab infusions. In April this year when I went for my Infusion I had 3 longstanding infection which the Rheumatology department had chosen to ignore for over a year. A different nurse spoke to my Consultant and I was told I could not have any form of disease modifying , immuno-suppressant drugs until the infections cleared up. Basically go away and make an appointment for your next infusion once your infections have cleared up.
I am still waiting for the infections to clear and every 4 weeks I have bloods taken to monitor the level of disease activity. My last Tocilzumab infusion was on 28th February. I reckon that makes it 20 weeks since my last treatment. In the first few weeks after my cancelled infusion I was really very scared, but as the weeks have gone by and there is no sign of a flare up my sense of well being has just gone from strength to strength.
My energy levels have improved significantly. My Mental Health and general sense of well being are better than they have been since 2004. I used to regularly think my life was not worth living. I could no longer envisage a future I wanted. I had no idea just how ill my Tocilzumad was making me feel. Don't get me wrong if and when the flare up comes I will be very glad to have my infusion back, but right now I am just thankful to be feeling this good without meds.
Finally I have hope that my future can be better and I no longer see suicide as an attractive option!!! Yes it really was frequently that bad in recent years.
In the Spring of 2016 my infusion was delayed for about 2 months, because I had a viral infection. My ESR rose to 63. I had a Flare that cost me neck movement, spinal movement and I now have a thumb on my dominant hand that does not bend. Yes when my disease is active it is vicious.
So what has made the different between then and now? Why am I managing differently this year? Well I put it down to hearing one word on two very different BBC Radio 4 programs in about June 2016. The word is MICROBIOME. If you don't know it, I hope you too will choose to find out more, because I believe the research will revolutionize not only the treatment of RA and other auto-immune diseases, but that it will also have a positive impact on many of the modern Western World's chronic diseases. Yes I know it all sounds too good to be true.
Some say the associated medical treatments will take 30 years to filter through. Well I was too impatient to wait 30 years, after all I am already in my 60's. So I read a lot and did what I could afford to put it into practice. What have I done? Wait for the groan, well most of it is about changes in my diet. I have also invested in nutritional supplements.
Your Microbiome is all the bacteria, yeasts etc. which call the Human Body home and in the post 2nd World War era (i.e. in My Lifetime and probably yours too) we have really messed up what previously happily lived in out digestive tract for many thousands of years.
I have been trying to nurture a healthier version of my Microbiota, for a little over a year now and it appears to help. It is not easy. The biggest change I have made is to attempt to cut out sugar and sugar substitutes. I am not an angel. I still have a big slice of gluten free cake, but now only a couple of times a month. I try to eat less processed food and just like they keep telling you to, eat more veg and salad and I try to keep my fruit intake to a couple of fresh pieces daily. Usually an apple and a banana. My budget does not run to exotic fruits. Basically more Mediterainian Style.
It is more about the good stuff you include, rather than cutting out major food groups.
In the last 2-3 years literally thousands of research papers have been written on the subject of Microbiome and Mictobiota. Arthritis UK is pouring significant sums of money into this type of research and a good place to start is on Arthritis.org Gut Bacteria: A Potential Game Changer for Rheumatoid Arthritis. If you are looking for a more general starting place try bbc.co.uk/guides/zq7nj6f That should bring you to BBC i Wonder What Should I Eat For a Healthier Gut? If you prefer to listen put something like Healthy Gut or Leaky Gut into Youtube. Try Amazon UK Books . Put in something like Good Bugs, or Healthy Gut for popular stuff or Microbiome for a more Academic stance. You can read a lot and learn a lot on Amazon Books before parting with a penny.
If you are still here you deserve a prize. If you want me to suggest some more specific respected names of researchers, authors or book titles I am happy to do so.
There is massive research taking place, but this is a young field with loads yet to learn and Big Pharma and the Processed Food Industry have a lot to lose. The NHS and the whole of modern western medicine is a bit like a huge ship that has been going in one direction for the last 70 years or so and will need a lot of convincing that a new route and a new direction is needed. A lot of folk will still be at the point of just wanting to pop a pill rather than make lifestyle changes.
If you are in the early stages of RA this probably sounds like too much hard work, especially if you are feeling as utterly exhausted as I felt for so long. For many years I spent about 16 hours a day in bed most days and the remaining 8 slumped in a chair often without enough concentration to watch TV. My carer came 2-3 times daily to make it possible for me to live in my own home. If a really severe case like mine can improve so can yours, it just might take longer than you would like. Your future can be better than it is now. That is the key message I hope you can take from my experience.
Merely suppressing symptoms with anti this and anti that has left many people crippled with chronic disease and Health Services Worldwide crippled by the cost. We need to be looking to getting to the root of the problem and helping our bodies to heal with natures nutrients where possible. So speaks the Medical Anthropologist.
Hope this helps and inspires.