I was so scared 2 months ago. My labs were crazy high RA over 969 i know it’s sounds crazy high. my ESR 58, CCP 116, others normal. inc CMP CRP..
I am on plaquenil 200 mg 2 times daily for 2 months..My new labs show RA down to 649, still very high, and ESR was only 4 hooray!! rest normal..and i feel good..nothing like what most of you are going through..have been close but not as bad..
I have also been tested for Hep c Non react or negative forgot what it said, also Ana is negative.
Does anyone know if my ESR being 4 means remission? They didn't repeat the CCP yet. I don’t see my rheumy Dr till next week. and that’s because i called..for my results, and asked for and explanation, of my tests..I am hopeful and grateful. I do know this can change since i was recently diagnosed..but think i have had it for yrs..Any info appreciated i Google and get different confusing info..but here it seems like you all care and help each other which is so comforting…Good luck all of you!!!
I am on pain meds , and i have lowered my intake by less then half within the last Month.
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joniv
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Hi and welcome. Firstly that's great news that your ESR is down to 4 and you are feeling much better, less pain etc. I don't know if you see in remission - only your rheumy doc can say whether you are really. It is worked out differently in different places. In some parts of UK its done by your DAS - that's your disease activity score. In others such as mine neither tge tern remission nor DAS have ever been mentioned to me. I only know these things because of this site really. I think Rheumatoid factor counts for something on the DAS but not that much if you bear in mind that some people are sero negative but still have aggressive RA where others are positive and don't. I know ESR and CRP are important for some but are meaningless for others - so I really wouldn't read too much into these. The main thing is whether you have painful and swollen joints or not really. Hydrocichloraqune (Plaquenil is just the trade name) is good for some but it is the least heavy duty of all the disease modifying drugs so if you aren't found to be in remission its likely that others may be added in such as Methotrexate or Sulphasalazine. Stay around here and find out more. Take care, Tilda
Thank you Tida , I am glad i found this site and also grateful for all the feedback on blogs etc. Your answer makes a lot of sense. I have been looking around this site and have learned a lot here already in a few hours.. Glad to have a place to go, and see others who understand and have knowledge, or just need more like me now. I will be staying around i feel welcomed already..Thanks Joni
As Tilda says, it would be the rheumatologist who decides if you are in remission, and they would use a variety of ways to measure that - bloods, DAS, examination of your joints, and just generally asking you how you feel. Its not really any one of those things on their own though, but looking at the bigger picture.
Hi Thank you, My Rheumatologist doesn't seem to be to interested in talking..he hasn't done the scores like i see here..he tells me to make a fist, turn hands different ways.. but has never examined hips, knees or anything else. But he tells me he knows a have a severe type of RA..so i figure hes just going on my Ra ccp and esr...I am seeing him Monday to see what he says about knew bloodwork. My pain a decreased over 70% within 2 Months. I know that seems fast. maybe the Plaquenil is working better and faster then expected...I do know that is really fast and may be coincidental but i hope its so. Again thank you Joni
Just one thing Joniv, I think you are based in the States? There are other Americans on here which is great. However you should bear in mind that most of us on here are based in the UK so you may want to bear that in mind when comparing notes about rheumatologists because here we have the National Health Service which most use. If you are paying for your healthcare through insurance etc you may want to get a rheumatologist who examines you more thoroughly and doesn't simply go by your bloods - you have more choice than we have so I would demand a bit more if him re examination and discussion on Monday. Tilda x
Wow Tida i love the UK. (movies especially).it sounds like your Dr's are better, i'm on disability since i had my neck, many yrs ago. My insurance isn't good, not that ill complain i know lots have it worse It does sound like your Dr's pay more attention to exam's which i feel is really great!! But i'm just going by my Dr..i really need to find another, just don't have the means.. insurance only covers this one in my area.
I hope it's OK if i stay on here..would like to know the differences also..more knowledge is best if figure..Joni
Of course its okay if you stay around Joni - there are two other regular contributors from the States. It does mean that many of us don't really have a clue how your Heath system works and you will read people talking here about state benefits and the NHS a lot. Its definitely not the case that doctors here are better - they are a mixed bag like everywhere. Its a shame yours won't talk more I think. And if he says you have very aggressive RA then why has he only got you on Hydroxichloraquine - the most mild of disease modifying drugs? I wish you luck with your next meeting with him - maybe you should tell him about things you learn from this site and he might buck up his ways a bit more?! Tilda x
He wanted me on MTX..but i waited till i had more blood work i just didn't think he examined or even gave me his time at all for questions, plus he never explains,,now i see lots of you on it ...So when i see him i will let him know. I don't feel like he notices other things with my RA..just seems like reports are his thing..Thank you Tida..hope your feeling well
MTX is a very good drug for many and with Hydroxy (Plaquenil) its been excellent for me. Having a week off both as my immune system is fighting a heavy cold so my doctor advised me to drop them this week. Early in the morning here and I'm getting my kids up for school soon. Tilda x
Sorry to hear that, sounds like you have a great attitude . Which is something needed, with all your going through. I'm afraid of what MTX might do to my immune system.there are so many side effects. I worry it might cause more problems, but i'm changing my attitude, seeing lots of you here saying how good it works. When i said i didn't want the MTX,,He said i need to be on sulfasalazine then..I'm going Monday, maybe i can get him to explain more...do you know which has less sid effects? feel well Tida
Everyone is different in their responses to these drugs Joni and I can't advise. To me it sounds as if he's an okay doctor but just poor communication skills perhaps? The meds he's suggesting are the ones we all get put on and the sooner you start the sooner the chances of the disease being halted in its tracks. They take a while to work so there is some urgency. MTX is the stronger of the two and they both mess with your immune system that's how they work but you've got to realise that your immune system is over reactive anyway. Be firm with him about needing answers. Tilda x
Just have to say, I feel dumb..never even thought about the fact my immune system is over reacting...sounds obvious, but i wasn't thinking like that...Joni
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