Help ....

[claireyj]

Hi all hope you are doing ok ....not been on as not much to say apart from now as had consultation yeterday and need help to understand what it all means ...am taking 15mg Metho and next time I go she wants to increase to 20 mg ...I just feel that I want people to be honest with me help .... Apparently I'm sero positive ? Positive RA Crp less than 1 ... No damage to joints following x rys... Anti cpp strongly positive and apparently interestingly ASO titre positive at 400 iu ....also I have protein in my water they think I have an infection I think I've had that since this all started could this all be because I have an infection and once treated shall I see how I go and take myself off drugs or could this be something else (god forbid) like lupus....hardly any joint pain now and on 4th week of methotrexate..any ideas .... Thanks so much hope thinking of you all Claire xx Mail you later Michelle x

[Hidden]

Hi Claire, can I just confirm, you have positive rheumatoid factor, strong positive anti ccp and you're joints are feeling much better after 4 weeks on mtx? It sounds to me like you're treatment is working so why do you want to take yourself off medication?

Paula x

[caggy]

Hi Claire don't come off you will regret it, I'm now up to 20mg like you and have no pain and have had kidney infection sorted with antibiotics, Must admit it does make you wonder if it's all only been an infection! But like you my result were high which is proof you need the treatment apparently you have to go a year without a flare before they will reduce the meds, I want to come off but have tried that before and it didn't work. be warned.

Love Carol

[Tillytop]

Hi Michelle

It sounds as if your current meds are really helping your joints and, based on the brilliant CRP result, keeping the inflammation under control. That is great news after only 4 weeks on mtx and sounds like a really good result! Presumably the rheumatologist wants to up the mtx dose to see if things can be even better for you.

I wasn't sure whether you were asking for clarification on being sero-positive and the anti-CCP results so apologies if I am saying something you already know. My understanding is that these tests are an indicator of the type of arthritis you have and may give an idea of the longer term prognosis. The docs tend to use them to help in their intial diagnosis. Also some of the newer meds (ie biologics) are known to be more effective for people with sero-positive arthritis so these results might influence the rheumatologist's choice of meds if different or additional meds are needed at a later stage. I don't know anything about the ASO titre though - it's not something I have heard of.

As for the urine infection – hopefully it is just that - a simple infection which will be dealt with by antibiotics. I absolutely would not recommend you even thinking of stopping the meds which are helping you so much once the urine infection has cleared without discussing it with your rheumatologist first, otherwise you could be back to square one. Because methotrexate suppresses the immune system, infections can be more likely and more common (although despite being on multiple immune suppressant meds for many years I have been lucky and never found that to be the case).

It sounds from your blog as if you are feeling pretty stressed and worried about it all Michelle - but from what you have said it sounds as if you are doing really well RA wise, so do try not to worry if you can (easier said than done I know).

Thinking of you.

Tillyx

[Tillytop in reply to Tillytop]

Sorry, just re-read my message and realised that what I said about biologics doesn't read right. What I meant to say is that I believe that SOME of the biologics are known to be more effective for sero-positiive arthritis.

Tillyx

[claireyj]

Thank you for the advice ladies I am so pleased you are all around....I am not taking for granted the fact that I am so better off than others on this site ....but my consultant just won't say you have RA doesn't seem to want to commit ?! .Paula..from the start my crp has been very low but yes anti ccp very high and RA ...perhaps I have low crp because it is such early stages. I don't seem to have been too bad with 15mg mtx worried about going up to 20 in case of serious side effects as a work full time and please dont think me vain but I am worried about hair loss and yes and you are right Tilly still anxious about it all and still getting my head round staying on meds forever, probably because I have had sore joints never in terrible pain like you poor people...thanks agin lovely people Claire x

[earthwitch in reply to claireyj]

I really don't believe a lot of doctors in the NHS that just won't tell their patients the diagnosis, or don't want to commit. If they aren't sure, they should still be able to tell you what the "probable" or "possible" diagnosis is, instead of leaving you in limbo like that - especially when you actually do have positive blood results to back up a diagnosis. Next time you see him, ask him straight out - and if you take someone with you to the appointment, I think you might have a bit better chance of getting an answer, as they don't seem to hedge around so much when there is someone else with you.

[helixhelix]

The other thing to bear in mind is that all the research seems to say it's better to be very aggressive with this as early as possible, so hit it hard with drugs and so on, and that gets the best results long term. Thinking that because pain is manageable you can cope without them and will wait till it gets worse is apparently not helpful in longer term, as then becomes more difficult to control. My personal aim is to hopefully get to a medically controlled remission, and then think about reducing the drugs. Until then I'm carrying on gulping them down. And most days I'm pretty good now, and rarely have the agonising pain I used to have, but I can still feel the RA is active as a couple of joints are very slowly getting worse.

Oh and it does seem that some consultants don't like being too specific about which type of inflammatory arthritis you have if it is still at an early stage, particularly if they need to use how you respond to the treatment to help determine the final diagnosis. Pollyx

[Hidden]

I would question why you are going up a dose of MTX though, sure your consultant has his reasons but I'm nosey and would like to know why!! glad it's working for you, if I was in your shoes I'd be feeling exactly the same (questioning the diagnosis), infact I still do, wishful thinking in my part though

[Dotty7]

Strongly positive anti-CCP is pretty conclusive in the diagnosis that it is RA - it's generally reckoned to throw up fewer false positives than Rh Factor. Low inflammatory markers are generally a good thing, or you may be like me and just be a Normalblood. Mine were always low and still are, so I'm bizarrely grateful that I had strongly positive anti-CCP as it means they put me in the system quickly and are keeping me in it.

Don't give up on the drugs, for heavens sake. Remember the pain you had which drove you to the doctors in the first place, read back through any previous posts you have made, and ask yourself if you want to go back there. There may be a time when they reduce your medication, but they will want you to be stable for longer. I think it is quite usual to go through a spell of thinking that this has all been a horrible mistake. I know I did.

[Hidden]

You might want to read my recent blog "Fears" to see how beset by doubt I get and this is me - a year further down the RA road than you are. Also I had some really brilliant responses that would be as appropriate to your current state I think.

But unlike you I had a negative anti-CCP which almost had my rheumy leaving me in limbo for longer although I did at least have a weak positive rheumatoid factor and high inflammatory markers to represent my symptoms! I think the positive indicators you have make it extremely likely that this is RA and as others have said it's really excellent that you have been caught early and that this drug is working well for you. It is an aggressive drug but it does slow the RA down brilliantly for many of us and that's why you are actually very lucky to have been diagnosed in time for the drugs to make a significant difference. But I know myself that people like us don't actually feel all that lucky relative to the general population, friends and family who aren't on these potentially toxic drugs.

So I do understand exactly how you feel having been there myself many, many times over the past year since diagnosis 10 months ago. But everyone here is right to point out that it's much too soon to be thinking of turning your back on them yet.

However, as Williby has said, if I were feeling pretty pain and stiffness free AND my CRP was down to 1then I would also question the wisdom of going up to 20mg of MTX. Perhaps you could tell your rheumy nurse or GP that you aren't happy to do this and explain why. I think we do have to be careful that these doctors don't sometimes get a bit trigger happy and don't use a sledgehammer to crack a nut. Tilda xxx

[claireyj]

Thanks everybody xx Keep you updated and will defo question the incease to 20mg Mtx gonna take hubby with me as a bit of back up :)) next time x

[cazh]

Hi Claire,

I had this ASO titre test done when my GP was trying to find out what my joint pains could be, before I was referred to a rheumatologist. Mine came back negative. I researched it at the time and understood it to be a test for possible rheumatic fever. Found this online: -

labtestsonline.org/understanding/analytes/aso/tab/test

"Formal name: Antistreptolysin O Titer

The ASO test is primarily ordered by itself or along with an anti-DNase B to help determine whether a person has had a recent streptococcal infection. In most cases, strep infections are identified and treated with antibiotics and the infections resolve. In cases where they do not cause identifiable symptoms and/or go untreated, however, post-streptococcal complications (sequelae), namely rheumatic fever and glomerulonephritis, can develop in some patients, especially young children. The test, therefore, is ordered if a person presents with symptoms suggesting rheumatic fever or glomerulonephritis and has had a recent history of sore throat or a confirmed streptococcal infection. Since the incidence of post-streptococcal complications has dropped in the U.S., so has the use of the ASO test."

Sounds as if your MTX is really working - I've been on 10 mg since May, and although I feel much better, have just been told to increase to 15mg, as rheumy nurse felt there was still some swelling in my hands.

Hope you get info (and re-assurance) from your consultant that this increase is for the best.

Caroline.