New Pre RA diagnosis

[colindgreen]

Keen to hear from anyone who has Pre RA or has been newly diagnosed. My bloods are showing very high rheumatoid factors and had symptoms for two years in hands. Knees are also showing symptoms in the last 3 to 6 months and my right foot.

Been prescribed hydroxychloroquine which I am worried is too mild.

I raised the issue of pain management, and was told by my consultant to continue with Ibuprofen; which I flagged is not managing my pain, but I was told this was the correct treatment at the moment.

[patsymay13]

Hi Colin , I was diagnosed in Jan this year (with high ccp and rf) and had problems with my hands for a few years on and off , I am on hydroxy alone , but was given a steroid injection in the butt on diagnosis, the hydroxy seems to be doing its job I have a few niggles here and there but nothing as bad as it was back then ....also forgot to say that it does take around 12 x weeks to work ....

[colindgreen in reply to patsymay13]

Thanks you for your reply. I guess I cant help but wonder if it would be better to hit it hard now, rather than a watch and wait approach with the mildest treatment.

[KittyJ in reply to colindgreen]

The hydroxy may work for you Colin, it does for some. I’m sure your rheumy will be keeping an eye on how you are doing. I certainly wouldn’t want to be on anything more than was needed to get my RA under control. Hopefully you will feel some benefit soon, but it can take a few months to start to work. Good luck 😊

[KittyJ]

Welcome. If you put newly diagnosed into the search box and filter results to NRAS then all posts concerning that will come up. Something to look at until others come along here 😊

[nomoreheels]

Hiya colindgreen, welcome. I'm not newly diagnosed (seropositive 2008) but I just wanted to assure you that hydroxychloroquine can be a very good med, especially if at diagnosis the joints affected are few. Your Rheumy will have had good reason not to initiate treatment on methotrexate (if this is what you’ve read about or expected to be your first DMARD), but the only way to know why is to ask him/her I’m afraid. There could be other factors involved such as his examination of you, your inflammation values/other blood values, imaging results or medical history that we aren't aware of which contributed to decide on his preferred treatment plan. Be assured he'll be keeping a close eye on your drug monitoring blood results to see how you're responding, your inflammation values particularly.

Just for info my Rheumatoid Factor was in the 1,000's, was anti-CCP positive & I also had few joints affected when I was first diagnosed (toes, ankles & erosions in remainder of foot) & HCQ was my first DMARD. I also had two different NSAIDS & a short course of steroids to see me through to the HCQ taking over. I have no official list to work from but from what I understand (experience-wise 😏) of the four most commonly prescribed HCQ is second only to MTX to be the initial DMARD prescribed. I stayed on it around a year & then MTX was added as HCQ wasn't managing to control me well enough. So, there's time, give HCQ a chance to work to see if it's enough for you just now. It does have it's limitations when compared to MTX, sulfasalazine & leflunomide (the other common ones) as only two doses are available in Rheumatology, either 200mg or 400mg daily, the others have greater dosing options, that doesn’t mean they can’t be effective though!

I hope some of my experience helps & do hope you start feeling the benefit soon.

[StormySeas]

Lots of good replies below but I just want to say these drugs take a while to work, weeks and months (not days like steroids), and that it’s a bit of a waiting game to begin with.

I was not prepared for the length of time it can take to respond to this long-term treatment. Firstly the drugs take a long time to work and prescribing protocol means that they (rightly) start you off on the least toxic.

My advice would be to be prepared that it might take a while to get treatment right, and for it to take effect.

You can help by making a diary of your symptoms as the sooner you play an active part in your treatment the better. Take pics of swollen joints, note which joints hurt - how badly (a scale of 1-10 is useful) note how ill you feel. If you can present the rheumy with a picture of exactly how the disease is affecting you it will really help. It took me years to do this! Good luck ...

[Lizard28]

Hi, a few years ago when I was in hospital for breathing problems, I had my blood checked and doctor came and said I have a very high RF but strangely had no pain at all. I was referred to my now regular Rheumy doc, she diagnosed MCTD and I was put on hydroxy, I do have pain now in my hands and knees have it in my feet. I get the occasional steroid jab but coping with the hydroxy again. It’s a strange illness.