Anti-CCP (elevated) - aggressive RA and aggressive tr... - NRAS

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Anti-CCP (elevated) - aggressive RA and aggressive treatment?!

Hi guys,

I'm just super confused about what patients should be receiving "Early Aggressive Treatment" and what patients shouldn't..

How do they assess who should start with a combined therapy within the "window of opportunity" and who shouldn't?!

Does anyone know from their Rheumatologists?

I did ask mine but she didn't seem to give me a straight answer really. I have a referral to an NHS center so I'm waiting for that now and planning to ask them all questions I have! I look forward to know..

I did a lot of research and I know some will argue that 'the Internet is dangerous', however I don't see why a patient should stay in the dark and ignorant, rather than reading academic research papers and inform themselves further where possible..

I read that patients who have elevated anti-CCP are prone to a more aggressive form of RA. Of course it also depends on the person and other factors most probably. And also it depends on the NICE guidelines on what treatment patients should receive. Apparently anti-CCP is also more specific and sensitive than RF used to be, in detecting RA.

I would be interested to hear your experiences and what were you given when you were first diagnosed and why were you given 1 drug or a combination of drugs?

I'm assuming that if someone showed damage on scans, would have probably been given a combined stronger therapy rather than 1 drug only.

x

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Hi Regina

For aggressive and active RA (which I have too) my Rheumy told me it is important to try to get the disease under control as quickly as possible to minimise further erosion of joints and that combined therapy is recommended.

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Thanks for sharing your experience Lolabridge. I guess that when I'll see the NHS rheumatologist they will let me know if I should stay on Methotrexate only or add more drugs.. My RA is active on Ultrasound and will have ESR and CRP done tonight, so will see what comes out on those too. These two were negative until a month ago or so. xx

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How do they know you had aggressive RA?

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Hi. I was given absolutely no choice when diagnosed (through anti ccp) and told it was MXT as the first line treatment. I wasn't given any scans or ultrasounds - I've still only had 1 ultrasound and that was on my wrist. I wish I had been better informed than I was at that first meeting with the Rheumatologist so read all you can and ask the questions!!

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Thanks Dobcross. What medications are you on now..? Still Methotrexate?

Interesting - as my Rheum. did not want to give me treatment only on the basis of positive anti-CCP. So the only reason why she gave me this treatment is because the subsequent Ultrasound scans showed inflammation activity plus bursitis inflammation everywhere... in all my painful joints. x

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I'm still only on MXT, about to increase to 17.5mg after 6 months on 15mg. To be fair, when diagnosed I did have visibly swollen fingers, feet etc as well as anti ccp but I wish they had scanned my joints too. I'm going to ask next time I go. Goid luck at your appointment.

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Great. Yes you should ask x

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Yeah I intend to ask all sort of questions until I'm satisfied. I hope they will assign me to someone knowledgeable... :o

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I understand there are specific criteria a specialist must follow according to the NICE guidelines.. so I suppose that they give Methotrexate to all as the first treatment as it's cheaper and also more effective than other ones.. plus it's an anchor drug, to which others can be combined with. So I understand the choice of this drug at first hand. What I don't understand is how they assess who should receive this drug only and who a combined treatment.

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All my inflammation blood results were very high, I’m sero positive and my Rheumatologist told so.

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I see, thanks for clarifying!

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Hi Regina79, diagnosed Dec 2015 with Anti CCP elevated.. afraid I stupidly ignored it for 16months which in hindsight caused a massive flare up & damage to hands & wrists first followed by feet & knees..

So, in your shoes push for methotrexate & Sulfasalazine ASAP.... this will help the inflammation, pain & damage to joints.. after 2 years of the above I started on biologics last week, taken along with methotrexate & hoping this will massively improve my quality of life.. don’t sit on your haunches, go for it good luck xx🍀

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Oh dear. So, did they diagnose you but then didn't give you treatment or did you decide not to take treatment?

Sorry to hear :( I really hope they work for you!! xx

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I was in denial🙈 I refused all treatment after diagnosis until the first flare up, which put me in bed unable to feed myself, wash myself or toilet myself..don’t even go there Regina, the sooner you are on the meds the better chances of no damage to joints 😘

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Diagnosed in 1987 as seronegative (no RF) and for 6 months was on Diclofenac alone. After 6 months, I was referred to Rheumy as my ESR had raised to 86. Also diagnosed with Sjogren'sSyndrome. Put on Sulfa along eith the Diclofenac. 13 years later, after Cancer treatment, I was declared Seropositive Anti CCP was extremely high and I was also prescribed MTX and Leflunomide (no more sulfa) with high dose Pred for the Vasculitis, which consequentially gave me Osteoporosis with 4 spinal fractures and also have Osteoarthritis of the hip. I find that since becoming Seropositive my RA and Sjogren's are much, much more active.

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Bless you darling xx so sorry to hear about your cancer too..

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Well I have to say, that compared to everything that's happened since, I found cancer a doddle - I guess I must have been lucky.

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Hi Poemsgalore - hope you are well, please can you share a bit more about Leflunomide as I think this is what my Rheumy wants to add to my biologic? Appreciate your feedback - Hessie

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Of course Hessie, firstly this is the link to the NRAS information about Leflunomide. nras.org.uk/an-introduction...

My own experience has been rather good as I've Had no side effects. The only problem is that my BP has become gradually higher but as I'm also on Pred I would expect that anyway. It appears to be keeping my RA under reasonable control but I also have a low dose of MTX for my Vasculitis, so this would also effect my RA. All in all, I'm pretty happy with the drug.

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Thank you so much - appreciate your response. Enjoy your day. 😌

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An experienced rheumatologist uses all the information to come to what they consider to be the best decision for that patient. So not just initial blood tests and scans, but also what they observe, what stage of life the patient is at (esp re childbearing), what other medical conditions they might have, and their overall level of health. They also tend to want to aim for the lowest amount of drugs needed for controlling the disease.

I too have anti-CCP positive aggressive disease and my rheumy follows the step-up approach. So starting with MTX, then increasing doses and adding in other drugs as necessary until the disease is under control. I was then in remission on triple therapy for approx 8 years.

A few rheumies follow the step-down approach where they start you on triple therapy, and then taper down. Personally I’m happy that my rheumy stepped up, as that way I knew I needed the extra drugs.

But because people respond so differently to the drugs, two people with exactly the same blood test results could end up needing very different levels of drug treatment. One may find that all they need is a low dose of MTX, the other may need the whole pharmacy. Keep your fingers crossed that you are in the first group....

Since you have yet to really get to a therapeutic dose of MTX, are are only a couple of weeks in I would say it’s far too early to work out what you will need in the future! Sure ask the questions, but have patience!

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As you say what helps me will not necessarily help you. I have never taken more than one drug at a time in 20 years.

Have been extremely fortunate & only had two Rheumatologists in that time & both practice mono drug unless you have another condition as well as RA.

It has served me well...now on Rtx...no Mtx...& so far so good.

But there is no room for complacency with RA.

Hope you are doing well after your recent procedure.

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Thanks for sharing Helix.

Sounds good. Yes it is indeed early days and I'm sure she will increase my dose of Methotrexate eventually too.. and I'm assuming that on the basis of my symptoms and the future blood work/scan monitoring, they will be able to assess if it's working or not.

I'm assuming that the disease can go into remission even with the use of 1 drug only, right?! Do you know this? So in this case, if Methotrexate alone will put me into remission, then I won't need anything else.

We'll see.

On what basis did they give you a combined treatment? Because of your positive anti-CCP?

xx

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Yes, you can reach remission with just one drug. Some people have been fine for years just on hydroxy - it is individual!

The positive anti-CCP becomes completely irrelevant once you are diagnosed. From then on the changes to treatment are usually based on your response to the drugs and your symptoms. So blood tests, DAS score, and how you describe things to rheumy and what they can feel. Also some rheumies check things with ultrasound more than others. I have been very lucky to have great rheumies that I trust completely, and that makes a difference too!

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That's good. Thanks!

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it would be amazing if I'll need one drug only... forever.

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Lots of people do....remember this site tends to represemt the worst of RA, not the best. There are loads of people just taking their pill and carrying on with life pretty normally, and they just don’t post.

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i guess so. Unless you have side-effects or the liver/kidney levels are bad after extended use, we should be able to take the same drug for a long time.

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I never felt any need to post on a forum, or ask my rheumy team many questions about my RA until things started not going according to plan approx 12 years after being diagnosed. I've certainly made up for lost time though since joining this forum 4 years ago! :-O

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Bless you. I guess what they say it’s true.. the ones who are well aren’t on any forum 😓

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I hope so....I'm banking on it!

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On way to blood tests now...! :O monitoring after two weeks of Methotrexate. Wish me luck!

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All contemporary information advises early aggressive treatment. The first test is getting past the GP, months wasted in my case.

However once referred and being seen, I think you may find practice differs between hospitals and between consultants within the hospitals. My experience with an older, now retired consultant was, gently, gently with her approach, she stated that she was trying to keep me off methotrexate. Big mistake. The new much younger one is more head on.

My initial treatment was hydroxychloroquine, it did nothing for me and in my opinion and my subsequent disease progression I would say not enough, not nearly enough and I knew this at the time and the weeks/months that followed. Then sulphasalazine, it did help a bit, but I developed an allergy to the asprin component and had to stop taking it. Methotrexate...fabulous in terms of disease control, but I couldn't tolerate the side effects and after a year of dropping the dosage with a corresponding deterioration in my health I raised a big challenge to my consultant. I have a letter from her saying my treatment had been 'sub optimal' and required escalation. 20 months later I'm still on daily steroids.

I'm now on biologics and still have not found my med, but at least all that can be done is being done.

I believe a lot of time was wasted without adequate diagnosis and aggressive treatment in the early days. Looking back I was too compliant, I'm not now, and have educated myself. I question, question, question everything. I provide an update letter of how I have been at every appointment and request it is scanned into my notes. It is. That leaves no wriggle room, nor misunderstanding. I'm satisfied with my care now.

I would ask questions, ask for alternatives, ask why this drug and not that one, take nothing at face value, be polite, be informed, be direct.

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Yes... after all it’s our body and if there are drugs our there that can put us into remission if taken at the right time, then we can’t play with our lives and ‘wait’ for a doctor to do something! Xx

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I found a very informative article.. about the early aggressive treatment:

nras.org.uk/combination-the...

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Hi Regina

My understanding in 2015 was and still is that anyone with RA symptoms should have urgent referral for specialist diagnosis. When diagnosis is confirmed, aggressive treatment should begin.

This should happen within 3 months of first symptoms appearing, for the best outcome in terms of reaching remission induced by DMARDs, and to reduce damage.

Meantime, it is also very important to administer drugs that will quickly reduce inflammation (and therefore also prevent damage eg bone erosion) in the period before DMARDs can be effective.

I was in terrible pain with inflammation throughout my joints, and no pain relief for four months (USA system was paranoid about opioids and steroids so that a doctor or PCP might lose their license if prescribing these before diagnosis confirmed) until I reached the UK and was taken to a Out of Hours appointment.

Obvious RA erosions in my hands under ultrasound are the result of late treatment. These erosions are supposed to not occur early in disease progress but that depends on swift control of inflammation and severity of disease activity.

Plus, it was a locum rheumatologist I was seen by first. Only one DMARD was prescribed. And so the tale goes on but that’s plenty to answer some of your concerns.

If you are prescribed Hydroxychloroquine, please do ensure you have annual, thorough eye checks. Those NRAS info leaflets are pretty good.

Wishing you quick remission! 🙂

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Thanks dear! My fingers are getting worse each week.. my right index is now getting like the left one 😭 so much pain when using them and they’re locking?! Scary to say the least xx

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It is scary. We are supposed to rest during a flare. I was forced to while still in the USA, as the pain everywhere was so excruciating that I could not sleep, or turn in bed, or get dressed or fill a kettle etc etc.

I made a chronological list of all signs and symptoms so that the GP had it on record, and I also gave a copy to the Rheumatologist.

Those locking fingers definitely should be on your list!

I included everything prescribed (NSAIDs in USA, no use whatsoever for uncontrolled RA), how the symptoms started, which joints were affected in order of progression.

The only relief I had was after going to A&E. Got a prescription of prednisone for a very short period but the PCP was not free to prescribe it so that was a sudden cessation instead of tapering. It was shocking!

Anyway, please do get signed off work if you get worse.

I had to use all my meagre savings, just surviving till I could get benefits.

Health is precious. 🙂

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Hi I was a long time getting a diagnosis so expect my window of opportunity had past. I started on Methotrexate which was pretty standard 20 years ago. As things progressed different meds were added. Hydroxychloroquine Sulphasalazine & Leflunomide prior to starting Biologics 3 years later. I believe in getting as much information as you can so you are able to ask questions at your appointments but there is some let’s say scary & dodgy info out there. Good luck x

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Hi - I tried mtx and it just did nothing for me but caused tummy issues - my rheumy swiftly moved me to biologics as he believes this is the way things are going. I am sero positive with aggressive RA that caused severe posterior tibula tendonitis in both feet - this happened very swiftly.

My RA is now impacting both hands. I am not on a combined therapy but he is looking to add another drug as right now I still have active disease and he wants my markers down to normal.

I was in denial when first diagnosed as I still felt good - but the whirlwind of RA soon leaves you thinking be sure to listen to your body and be insistent always.

Take it easy. Hessie 😌

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