I was feeling quite positive that despite the dx, I could beat this, and that I must have a mild case...Have been taking Mtx and Prednisone 10mg day for about a month now. Am having bloodwork done every fortnight (Does everyone do this...getting bruised arms already...)

Anyway, went back to Rheumy and got massive shock that my anti CCP is now greater than 250, in fact so high that they dont even bother with a number. The Rheumy explained that this is the greatest indicator that my RA is both rapid onset and also people with high anti CCP have greater likelihood of severe RA, leading to deformity and disability....

All my positivity (or was it denial) has been blown away. I dont understand how it can go to normal to off the scale in a few months?

What is anti CCP anyway? Can it be high and then go low again? iIs it just related to RA or does it have other significance? Am I definitely likely to get a severe case now? I am in my late thirties with 3 young children...am so worried about the future...

I started out with bloodwork often as you are doing but now I get it every two to four months because it has been stable for a while. 

Your feeling good may be more due to Prednisone than to suppression of your RA.  Prednisone is a strong anti-inflammatory that does a lot for most symptoms of RA but does less to stop the permanent damage than most other RA medications.  Most of us do not feel our RA is controlled unless we can get off Prednisone, or to as low a level as we can achieve.

I think your stress about the future is more likely to have an adverse impact on your health than properly controlled RA.  Many people with any chronic illness need some kind of medication to relieve stress and anxiety.  Those are sometimes as effective as specific RA medications for helping a person.  I hope you get effective treatment.  God bless.

Edited to correct error where I give information about CRP but call it anti-CCP.  I got my hands started before engaging my brain.  Sorry about that.  I try to be helpful, but I can make mistakes.  God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

I've never seen a specific number. Mine just comes back HIGH which is anything > 60. That is the top category at my lab.

It can go back to normal, but if you have chronic RA then it will likely stay high.

I have to disagree with Grandpavan. Anti-ccp is not a measure of inflammation. I think he was thinking crp which is another measure of inflammation. Anti-ccp is an antibody against a protein. If you have these antibodies its associated with RA/autoimmune diseases.

I also don't think it means anything about the severity of this disease for you. I think a high one means that you are likely to have chronic RA, but it gives no indication of whether or not the drugs will work for you. I have the high anti-ccp and got great control with Enbrel (as soon as it came out) and now great control with Rituxan. If these drugs had been available when I was dx'ed, I'm sure I would not have as much damage.

Being relatively new to this game, there is no reason to believe that you won't do extremely well. My rheumy told me to find Drs. for hands, etc. that are oldish (at least 50) because they just aren't see as much damage any more with the new drugs.

You are not doomed. But, you are likely to need quarterly visits to the rheumy and take drugs to control it. You can do this. You will most likely do very very well.

At first my bloodwork was negative too. That is very common.

I've had this for 20 years. My daughter was 1 when this started and she has grown up and is doing quite well as your children will too. They adjust. If you can't do everything that is ok. The children also learn about health issues and learn to respect people's differences and needs. It can actually be good for them.

Judy

Start 1989, DX RA 1994 On Rituxan, plaquenil, mobic, minocycline- In remission.

You can ask for a copy of your lab results and then research what all those tests mean, if you are so inclined. The lab always mails me a copy and I have a growing notebook where I keep them, along with explanations of the various tests. I feel more in control if I know what's going on, but that's just me. Others are more comfortable not knowing. The thing with this disease is that you have to do what works for you.

As to being doomed. No. You are not doomed. Your life will be different than what you'd planned, but the future can be bright. Twenty years ago, this diagnosis would have meant a strong probablilty that you'd be in a wheelchair within a decade.  That is no longer the case. There are many different treatment options available, and it is possible to halt or severely limit disease progress.  My RD told me that he believes we can totally prevent joint damage; the treatments are that good now. That's me; it depends on what your x-rays showed initally. If one treatment doesn't work, you will try another, and keep trying until you find the right one that works for you.  That is why you faithfully see your rheumatologist.  Attitude plays a huge part in how well you do.  Stay positive, take you medicine, work with your doctor, and do low-impact exercises.  And on those days that you can't stay positive, forgive yourself and start over again.

If you still have questions after reading this board, write them down and take them to your next doctor's appointment. Definitely ask about your prognosis. Sorry so long-winded. HTH
+Rachel

 

+WarmSocks
______________________________________________________
Aiming for NED
  Plaquenil, Sulfasalazine, Methotrexate, Folic Acid, Feldene, Prilosec, Verapamil, Maxalt, Diclofenac Gel, vitamins

Warmsocks, I am like you and pour over every detail...its amazing how much you can suddenly find out about things one previously knew nothing about, and now Im analysing bloodwork results and the like...

Judy your words are encouraging that you managed with your daughter since she was one, and it is true, they do adapt. My three and four year old know that I cant do certain things with my hands. This leaves us stumped at times like when they need something fixed or the top off a jar or something. My four year old was suffering from scruffy hair as I tried my best to tie it into a neat braid in the mornings but it ended up looking awful and falling apart. But she decided to have her hair cut in a bob which is very chic and she now loves it....i felt terrible about it but she has assured me that braids are dumb and bobs are the way to go!

Thank you all once again, you inspire me with your knowledge and positive attitude

RA and little ones is interesting isn't it?  Your little girl sounds like such a sweetie!!

All of my girls (except the baby) and I have long/longish hair -- I don't want to cut it!!  We have some braid days and some ponytail days. 

I'm glad that you found our board.  It has been so wonderful for me to have a support group without leaving the house!!  How great is that!?

I hope you post often!

Take care,

Shu-Shu

In that case, I highly recommend a trip to the library or bookstore for two books

+WarmSocks
______________________________________________________
Aiming for NED
  Plaquenil, Sulfasalazine, Methotrexate, Folic Acid, Feldene, Prilosec, Verapamil, Maxalt, Diclofenac Gel, vitamins