Some Words Of Encouragement. Update

[AARA]

Hi Everyone,

It is now 24 weeks since my last Tocilizumab infusion. I have just had the best summer I have had since 2003!!

Still massive problems with Chronic Fatigue, but now I can have several days in a row when I do not need to spend at least half the day in bed. I now have the energy and inclination to read and use my lap top. I have been virus free for months and as such I have started to get out and socialize once again.

On Tuesday this week, I actually felt well enough to shower, wash my hair and dry it and then get dressed and go out, all on the same day. I have been too ill to attempt that for probably well over a decade.

My Consultant stopped my infusions because of chronic infections. When I saw her again today, she said that my ESR was down at 11 and as this put me in the normal range she did not want me back on my Tocilizumab.

Just under 2 years ago my Doctors had me on about 10 prescription medications each month and wanted me on 4 more different classes of drugs. In February this year (2017) I admitted to my GP that I had spent the previous 18 months or so weaning myself off all the medications I had been prescribed by my GP's Surgery.

I have now been totally medication free since mid April. I am in no way advocating that anyone else should stop taking their meds. without medical advice.

What changed? Probably the greatest source of stress in my life for many years, had sadly been my elderly Mother, so when she died in December 2015, my stress levels reduced. The most tangible changes started in about June 2016 when I started reading about improving the health of my Microbiome. I changed my diet and added some additional vitamins and minerals.

If you want more details then follow the threads from my original post entitled "Some Words of Encouragement. Severe RA and No Meds, Right Now. The Benefits of a Healthier Microbiome."

If this is what remission feels like, well I hope I get to continue to enjoy it for a long time and that I just continue to go from strength to strength.

If you are in a painful and challenging place right now I do hope that life soon begins to improve for you too.

Wishing you well.

AARA

[Paulajolo]

Thank you for your encouraging blog. I am about to start on Tocilizumab hope it works for me aftercare years of trying different drugs which have just givenemailed allergic reactions

Fingers crossed

[AARA in reply to Paulajolo]

Hi Paulajolo,

Thanks for your reply. I do hope Tocilizumab turns out to be the right drug for you. If like me, you have lots of side effect problems with medication it makes things just that much more complicated.

I consider that with some drugs we might need the "normal" dose to bring the disease under control, but some people appear to respond well to a lower maintenance dose, which maintains the level of disease control, but with fewer side effects.

If we all responded in the same way it would make treating RA so much easier, but we are all individuals.

Wishing you well.

AARA

[Sweetheart0377]

Wow what a great post it's so nice to see there is hope at the end of the tunnel . Hope the remission lasts a very long time xx

[AARA in reply to Sweetheart0377]

Hi Sweetheart0377,

Thank you for your kind words. Hope is one of the greatest gifts we can give to each other. May you also find the right path to better health.

AARA

[Simba1992]

Congrats! Really happy for you😊👍🏻Stepping out of the box may enable good things to happen.xxSimba

[Rebecca5]

It's great to see a post where someone is feeling well & in remission, I pray that this that's a long time for you, take care.

Adeline x

[AARA in reply to Rebecca5]

Hi Rebecca5

Thanks for your prayers. For so many years when people talked about flare ups, I said I was waiting for my first "flare down". It has been a long, tiring and painful road to get to drug free remission. My key message is, if this can happen for me, then there has to be hope for many, many others currently suffering with RA.

AARA

[Neonkittie17]

Fantastic that you are feeling well! 😀❤️