Hello everyone, hope you are having a good Christmas.
Since starting methotrexate 3 months ago my symptoms don’t seem to be improving. When I spoke with Rheumy nurse she said that the consultant had written on my records that because I’ve tested positive for sero+ and Ccp + that I will have lots of flares that will come and go. She said they will look to treat aggressively because of it, possibly with biologics. Thankfully my appointment has been pulled forward by 3 weeks. Still all new to me.
Has anyone ever been told that due to their + types that this is what to expect? My greatest fear is this disease has ramped up very quickly and is running around inside wrecking havoc, I’d welcome any thoughts / experiences?
thank you 🙏
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HappyD34
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I’m also a strong sero + with high anti-CCP …. it is indicative of aggressive RA, which is alarming. However, if treated effectively it can be controlled. I’m on Tocilizumab and my disease is pretty well controlled. It doesn’t go away but we can live a fairly normal life.
I have found that I’ve needed to adjust my lifestyle also. I get lots of exercise and eat a very healthy diet… it all helps.
Hi Brushwork. Thank you for sharing. My consultant never told me about how aggressive myRA would be, in fact the figures were never discussed, it is only the reading I have done that has alerted me to it. Do the levels of your anti CCP indicate how aggressive, or is it just the fact it is over the limit ? Not sure if you can ever reduce them either? The flares I have are more of hot hands, feet, tingly feeling base of spine and discomfort in hips but it literally bounces around every week. I am so confused over it but I guess that’s the complexity of the disease. I love exercise but feel I’m too cautious in case I get a bigger flare or annoy my knee ( which is where it started from) , so any thoughts on all of this would be much appreciated. Thank you so much and I hope you are well 😊
I think maybe your rheumy nurse may have misread your rheumy,s notes! S/He didn’t mention it to you ….because how aggressive your RA will turn out to be isn’t something that can be predicted with any certainty.I was diagnosed Sero+ yonks ago ….hobbled around between crutches & a wheelchair & my wonderful rheumy said “take it day by day week by week, be sensible & you will be fine” !
He was right…apart from getting older I am no less able than friends without RA. So don’t try to predict the future ….imagining what MAY happen does not help .
Listen to your rheumy,, take the med s/he prescribes & don,t panic if one med upsets you…we have all been there!
Ask for a physio consult & you will,learn what exercises will suit you…..moving is necessary & definitely helps.
Think positive..just because you read something can happen….doesn’t mean it will happen to you.
Oh…..By the way…….Mtx often takes 6 months at least to work its magic!
In the days when I had my first anti-ccp test (when it was still a new tool in the diagnosis) my Rheumy gave me the numbers both were very high and he said they were a clear indication of severe and aggressive RA and probable heart involvement. However, and most importantly, if the disease is controlled by effective medication and for me anyway, lifestyle changes, a normal and good quality of life can be achieved and maintained.
I’ve done a lot of research over the years, I believe I know my RA quite well and my body too. I’ve had bad episodes but have managed with the help of very good Rheumy teams to get through them. I went through all the dmards, several doses of steroids, a number of biologics and even added some herbal meds in once. Now, I take the tocilizumab weekly and things are managed better than ever.
My RA also began with flares that were short term but moved around a lot, it was awful at times, as you never knew how you’d be from one day to the next. Limping on Monday, unable to lift your arms on Friday! Add in the fatigue and life was difficult at times.
I was vegetarian when first diagnosed 28 years ago and had been for 10 years. It was an ethical decision so I have remained vegetarian following a sensible, healthy veggie diet, but over the years I realised that too much dairy caused me problems and more recently I’ve cut out refined sugar. My instinct tells me that healthy eating has helped. I’ve also always had a dog, so have walked at least 3 miles a day most of my life, sometimes hobbled a bit, but when you have to, you have to….
What has become very clear, is that we are all different and what works for one person, doesn’t for another.
All I can say is that at 67 and given that horrid diagnosis 28 yrs ago, I’m still active and mostly well with no significantly damaged joints, living an active and enjoyable life.
Wishing you well and hoping you find a positive path through this… there may be bumps but I hope they are small ones…
Hello. Gosh you’ve had a tough journey , coping with the initial lines from your consultant to trying a few meds that work for you. It’s nice to read that you seem to have found your match ☺️Thank you for taking the time to reply and long may you continue to do well. I guess at 59 things are going to be more bumpier but good to know that I should be able to lead a relatively normal life. Wishing you well .
Hi, I am + and got very bad very quickly, from dancing on tables in the August to being unable to walk, unscrew a bottle or fasen my bra by the end of October. However, I was one of the lucky ones in that a couple of steroid shots and then methotrexate worked quite quickly (took about 3 months) and for the last year you almost wouldn't know there was anything wrong! My CRP level is generally about 1, down from 25 last year and all other bloods are usually withing normal range. However, since the weather turned I have been experiencing small flares,but absolutely nothing like before medication. So, it can take time and some trials of different meds, but it can be controlled, fingers crossed things start happening soon for you 😀
Yes I’m positive too and at the (very sudden) start of my disease (2015} my CRP was over 60. I have been on many meds since then along with short courses of oral steroids. My flares were controllable but damage has been done particularly in my hands.
My first biological med was amgevita (?) in June 23 and when that had little effect I was put on rituximab infusions in June this year. So far this has worked well and my pain etc is now mainly from damage already done. My inflammation is generally below 5.
Hi HappyD34 , sorry to hear the methotrexate isn't having much effect for you so far, I'm glad your appointment's been pulled forward to review sooner rather than later.
I'm seronegative but had a fairly dramatic onset of RA a few years ago that was deemed severe and was hard to get under control, so I don't think antibodies are the only factor - there's just a lot of variation in how it presents.
There are lots of treatment options available, but it is going to be a case of finding what works for you which can take a while sometimes. There is still a chance that the methotrexate could kick in - it took a good 3-4 months for me - but it also sounds likely you are going to need more than that.
Personally I was put on a relatively high dose of steroids and two DMARDs (methotrexate and hydroxychloroquine) at diagnosis, then after a couple of months needed a steroid injection too. Biologics were discussed early on but I chose to try methotrexate injections and triple therapy (adding sulfasalazine) first. Both did have a positive effect, though as it turned out, not enough. A few years down the line, we're still working on finding the right combination - but things have improved a lot from where they were at the start.
I really hope your review appointment is fruitful and your team put a plan in place that you're happy with. It sounds like they're not going to waste any time in escalating your treatment as needed which is exactly what we need with this condition. Sending very best wishes to you.
Hello there, oh thank you for your reply. Sorry to hear that you had a rough time but am pleased that things have improved for you and long may that continue. Good luck in finding the right drug, I guess we can all add resilience to our list of achievements, well, that’s something I need to work on 😀
sorry to hear your having painful flares. I m also sero positive which I’ve had for 30yrs and 14 yrs ago was put on biological retuximab which has helped to control it. Still get the odd flare but it’s the fatigue that gets me just before I’m due for my next infusion which is 6-8 monthly.
Exercise wise back in the summer I started a form of tai- chi that was organised by Versus Arthritis it is at my local hall and aims to build strength and balance, some movements are done sitting down. Has helped and it’s good to be with others that have RA and we have a chat and cuppa afterwards. They do an online session as well.
Hope your treatment starts working and have a pain free new year x
I was similar - the consultant told me the path he expected me to take and believes I will end up on biologics. I’m not on them yet and I was diagnosed 22 months ago.
I started on MTX 15mgs tablets and quickly had it upped to 15.5 then 20, then up to 20 injection. I cannot go any higher apparently due to my weight. He also added hydroxy tablets.
I was also put on steroids when diagnosed tapering down over 4 months whilst the MTX kicked in.
Steroids were like magic but as they tapered MTX wasn’t enough. It was around 12 months and it was like a switch being flicked. The constant pain had been tapering for a while but was stubborn in some areas. It seemed to all but disappear.
I still get what I call flash flares - read the term on here which describes my situation perfectly. Manageable without pain killers most of the time and take painkillers a couple of days a couple of times a month. I tend to have issues with my feet (sub taler - never heard of it until it hurt so much) my larger joints (hips/shoulders/ knees and it gives me carpel tunnel symptoms occasionally but only a day or 2 at a time. Not really had major issues with my fingers which I am grateful for.
I feel I only need my medication tweaking as if my body had seen then overcome my current meds.
I am nowhere near as bad as I was at diagnosis. It is still active but not everywhere all the time.
Hope this helps reassure , everyone is different but it takes time to get the right medication combo/dosage but there is light at the end of the tunnel.
I was diagnosed as Strongly Positive six years ago. It was strange really, I was at the GPs for something else, when I mentioned a horrible pain I'd had in my shoulder a few months before and then it vanished and reappeared in my left. Then vanished. I felt fine. Blood tests disagreed. I got a call within a week from RA man, to go in the next day! He said I was going on an early intervention programme, with a treat to target of no pain and no damage. Touch wood I'm in remission. If you get treatment early on it can help alot. I did read up on my test results and felt fed up; mentioned to the nurse that they meant I'd be in trouble, but she said it didn't mean that at all! So, we travel hopefully.
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