my CCP is 340 but RF negative.
two consultants differ.
i haven’t got it yet as I have some discomfort in one toe.
Meanwhile I have started 200mg of hydroxychloroquine. Not MTX which I did start and hated it.
so far so good with hydroxy.
Doctor thinks I will get it some day and he says I will know when it starts. At that point I have 14 weeks to hit it with medicine to control the development.
fingers crossed! If you have discomfort in one toe then sadly it probably has been triggered, but with this early intervention it should be controllable.
There is also now some research which suggests if you have a good lifestyle this will help keep it under control. The most important thing is to stop smoking (if you do of course!). This has a strong correlation with triggering RA. Also try to have a diet with lots of plants, plus lean protein like fish, and low on fatty and sugary stuff. Moderate alcohol and lots of sleep, plus daily exercise. And ask if you can have your vitamin D levels checked.
Good luck, may it stay in one toe forever!
thank you Helix.
What’s your view on Hydroxy.
I take turmeric, omega 3, Vit D, devils claw. Don’t smoke do loads of exercise and tape my toe to the next one for comfort. Podiatry says I have no signs yet.
Thank you
I think hydroxy is a great drug - I was on it for years! And entirely suitable for where you are now.
If you stay on it for a few years remember to get your eyes checked.
And still get your vit D levels checked to make sure you are takimg the correct amount if this is over the counter tablets.
Don’t get carried away with taking supplements,herbs, vitamins etc……any of this stuff can react with any RA drugs you are prescribed.If you feel the need to add to prescribed drugs ….always ask whoever prescribes any RA medications if it is compatible.
That's where my RA was first felt originally thought to be gout. My bloods were RA positive. Negative or positive if signs and symptoms are apparent that's good enough to treat it. As for knowing you've got it when it starts you're already on medication !
Be careful as even the most innocent stuff can have side effects or interact with other prescribed medications. I only had pain right left foot and in my right hand fingers not intense but it was there and had a positive blood test so was treated aggressively and so far some 20 plus years on, my joints are fine and no problems at all. Except my left foot which was badly affected probably before it actually hurt and turned inwards so it was straightened and has been fine ever since. So whilst diet and exercise and all the rest do matter it is vital to take effective step to control RA. In my case it affected my blood and so it can cause problems that whilst you may not be aware of now, could in fact affect your life in the not too distant future. It is also worth remembering that RA meds are generally very effective for most people although by no means all, so it is a bit of trial and error to find your regime.
MTX for about a year then Lefludamide which was great. It made things worse for a few weeks then sort of just worked. No more fatigue and remission. Then in 2016 i had an Scute Kidney Injury snd that was stopped so onto Azathyoprine which is ok and Benepali was added in over two years ago but because of many UTI's that was changed to Orencia. LEF made such a difference I'd take it again but can't sadly. I'd suggest you talk to your GP about your toe as it might need to be kept an eye on and with waiting lists nowadays?? My left big to moved to the left and pushed the others over but back then there was no huge waiting lists and you need to try to stop that happening and I'm not sure that taping it will work. Just an idea but could it be making things worse ?
I agree with others re supplements. They can interact with many prescribed drugs. They share the same pathway in metabolising, and can result in either toxic or insufficient levels of the prescribed meds your taking. I found out the hard way when I started Turmeric and ended up covered in bruises. The sales rep had assured me that although you couldn’t take with warfarin you could with clopidogrel, he was wrong. My blood ended up too thin and slow to clot. On researching there are many meds it interacts with. I suggest speaking with your pharmacist to ensure your supplements aren’t interacting with any of your meds. People assume because you can purchase over the counter they’re safe, but their not, many inhibit or enhance the effects of other drugs.
Hopefully the hydroxy will keep things under control for you. 🤞
Oh man! If I could go back to that day. Look up Clint Paddison's Ted Talk on reversing RA.
Jenhas -
How do we reduce those proteins. Seems to be the holy grail for RA.
I was on hydrochloroquine for about 20 years with reasonable control (occasional flares which were swollen joints, pain and feeling as if I had flu). Fortunately no erosions at the sites of swollen joints so had little damage. Then I didn't have a flare for a while, changed hospitals because of moving and they took me off saying that I was 'in remission'. I was OK for a time then had an enormous flare and have needed much more treatment since. I do wonder if that would have happened anyway...or perhaps not if I had continued on hydrochloroquine?
Interesting as exactly the same happened to me. Managed on max dose hydroxy for over 20 years then consultant said I wouldn't ever flare again because of my age and took me off them. Had the worse flare since I was a child (had 3 in the intervening years - babies, surgery etc) 7 years ago and still not settled despite back on hydroxy (lower dose), mtx and sulfazalazine. Was told hydroxy won't work as well second time but who knows as they said I wouldn't have children and wouldn't flare again!
the thing is I have never had a flare. Perhaps coming off returns you to whatever base line exists.
Was on Hydrox. for number of yrs, took a few months to feel results, which finally settled my RA down, which was severe at the time!! Hope it works as well for you...good luck!
rainyda- are you still on hydroxy?
My symptoms are none other than one joint. CCP count of 340. The RA consultant said that Hydroxy could prolong this phase for years, his view is that it hasn’t started but high risk it will.
How to reduce those proteins in the blood is the answer, the proteins that stimulate the antibodies.
Not on hydrox at this time, was flaring (RA) New rheumy suggested new a dmard; Rinvoq, which didn't work for me. On next app. I will suggest I go back on drox. My RA is not severe, (and hasn't been since Hydrox.) so I think this will be best for me, as long as I don't get severe. The best way to get protein down that I know of...is cut out processed meats, sweets, veg oils. Eat more fatty fish, eggs. canola oil, colorful vegs, fruit (berries, grapes, etc) . This helps me....Good luck!
New & waiting for consultant diagnosis. 
how to change RA consultant and/or hospital?
learning about different medications for ra
