Treating "difficult ra".

[Simba1992]

Stumbled upon this interesting article about all the questions around treatment options in " difficult ra" . These thoughts could be of help when we as patients discuss our situation. Hope to hear your thoughts😊

rheumnow.com/blog/my-approa...

[allanah]

Very very interesting as a difficult ra type Lol! Great read x

[Moomin8]

A good read ☺

[Hidden]

Very interesting article. Thanks for sharing.

[helixhelix]

"The average rheumy manages 200-400 patients"! In your dreams.....my UK one had I think over 1000 on her books and my new French one doesn't have much less I reckon based on local population and number of rheumies.

[Simba1992 in reply to helixhelix]

Lucky US😊

[helixhelix in reply to Simba1992]

Well they have other burdens right now, so overall I don't envy them.....

[Simba1992 in reply to helixhelix]

But I do envy the patients if they get more personalized treatment. Felt so good reading how a rheumy can be emphatic and understanding of the patients role and position. Not something that I have found here in France😞

[helixhelix in reply to Simba1992]

I adored my UK rheumy and delayed moving because I was so reluctant to change, she was hugely empathetic and took great efforts to explain everything and discuss options.

However, my new French one seems nearly as good. A young'ish women, very prepared to ask and answer questions. And although an old/small hospital she does have more equipment -like an ultrasound by her desk which she uses at every appointment rather than waiting months for a referral. So very different from most other French specialists I have encountered who are patronising pillocks

[Damaged]

Thank you so much for this article Simba . It was interesting to read the dialogue following Dr. Cush 's article. This is why I find writing post challenging. I am a very challenging patient both due to severity but also due to very long list of drug allergies and intolerance. I continually in force that I refer to my body only and do not recommend my approach to anyone else. I absolutely love my Rheumatologist and have participated in drug treatment for what is two years in July. This article has given me pause. I was going to cancel Rituxan infusion scheduled next month. After reading the doctors comments I have reconsidered. At least I have tolerated it well so far.Thanks again.

[Simba1992 in reply to Damaged]

You really are the CEO of your health 😊👍🏻

[Damaged in reply to Simba1992]

I simply asked that they hold on Rituxan until I discuss it with Rheumy. That will also give me a chance to get all these infections under control. It is a beautiful sunny day today. No matter how bad it gets the sun just makes me happy.🤗

[Simba1992]

Did anyone of you click on the " CEO of your health". That was really quite a good way to look at it and an understanding that you would be so happy to find in your rheumy 😊

[helixhelix in reply to Simba1992]

Yup...and that's why I liked my first rheumy so much. She was quite clear that I had major role.

[Hidden]

I like Dr Cush and have read his work before but I dislike this " Could it be that what you are treating isn’t fixable? Non-response to anti-inflammatory, DMARD or biologic therapies usually indicates your dealing with fibromyalgia, mechanical or degenerative disease." I particularly dislike the "well, it could be fibromyalgia" line which gets trotted out because it's easier than accepting you - the doctor - haven't got it right yet. My so-called fibromyalgia disappeared after my RA was better controlled.

[Simba1992 in reply to Hidden]

Yes, it only goes to show how difficult it is to find the right diagnosis in AI diseases😳

[Rahelp]

Great article well written and yes I hate taking the meds. I know i have to but this is reassuring.

[Simba1992 in reply to Rahelp]

You can however always take dietary measures into your treatment strategy as well as supplements and this way minimize the use of meds and perhaps be able to stay on less toxic medication🤔

[Rahelp in reply to Simba1992]

Hi I have been diagnosed with RA fibro OA. I have damage to every disc in the lumber region of my spine as well as in my neck. My feet hands and every other joint is damaged. I had a hip replacement 15 years ago. I have tried just about every supplement dietary and herbal remedy. I am a reiki master and have weekly sessions with an osteopath. I have times when I can hardly get out of bed. So toxic drugs it has to be. Without them I probably would not be able to get out of bed. But that dose not mean I don't know that they are not good for me just necessary and I am grateful for them. But I don't have to like taking them. I just have to do it.

[Simba1992 in reply to Rahelp]

Yes this is how it is, we often are dependent on the meds but that doesn't mean that dietary modifications and supplements wouldn't have a possitive effect alongside these med😊

[Rahelp in reply to Simba1992]

Yes I agree but you might be setting people up to fail. I have tried all sorts and found yen reiki helps with the pain relief. Thank god for my osteopath as he keep me moving. No supplements or dietary aids have helped so far. I trying CBO at the moment and am going to try the healthy but diet next. But all these things cost money and it's hard to find. More so for so.e than others. I font day do t try them if you have time and can afford it. But not all of us have time patience and money. Especially as they at not work. At the end of the day all these things are tries and supplements to our medication. That is the main treatment for all of us.

[Simba1992 in reply to Rahelp]

I am sorry they haven't worked for you but has worked for me and thousands of others. I am on AIP elimination diet so it really doesn't cost anything additional. True if you want to supplement with vitamines and minerals that are depleated with chronic inflammation it is an additional cost. There are so many different variations of RA and what workes for someone doesn't necessarily work for you, the same can be said about meds. Take care, xx Simba

[Entero]

Very useful article, thanks Simba.

[janmary]

Thanks for this - interesting.

[Padram]

Thanks for sharing this article. And CEO of your own health was very well explained.