Seronegative RA - RF and CCP markers negative

[Amy_Lee]

Great information that I have been looking for.... Hopefully I will soon be free from drugs one day in the near future.

arthritis.org/health-wellne...

[shareasmile]

Thank you for posting that article! I have been off of Enbrel for several weeks now--sick, then had surgery, then sick again. I don't seem to be suffering terribly as a result. I was diagnosed as seronegative and have had only one positive test-- ANA of 1:640. I almost feel like I could go without the Enbrel and see what happens. Nervous though! I don't want to lose the ability to get it if I need it!

[Amy_Lee in reply to shareasmile]

I am in remission for a few months since my rheumy declared it. I also hope that I can be drugs free one day. However, it did mention that it would be risky to go without drugs to maintain the remission. Just like you, I am worried too. I guess, all of us are worried really. I will continue to read more, to see if I can find something more convincing and comfortable for us.

Kindly do let me know if you go on drugs free remission. I like to know if you are okay. I sincerely hope that you can maintain your remission without drugs too. However, do let your rheumy decides because he or she knows best.

[Snazzyact in reply to Amy_Lee]

I personally know no one who has stayed in remission drug free.

[Amy_Lee in reply to Snazzyact]

Worrying really to go drugs free. Will have to be very careful on this. I will read up more for future decision when the time comes.

[Snazzyact in reply to shareasmile]

Be careful. When you go off a drug that has been helping, then decide you need to go back it, there is a high likelihood that the drug will no longer work for you. I know docs who will refuse to put you back on a drug you've stopped. So give it a lot of thought before you stop. Good luck !

[Amy_Lee in reply to Snazzyact]

You are right. Hoping so much to go drugs free but then I am very worried about what I read. It is not the time yet, when the time comes, I will then worry about it. Let us enjoy what we can do now until then.

[shareasmile in reply to Snazzyact]

Actually, while taking that break from Enbrel for sickness, I started getting those aches and pains back. Mine aches usually start in the elbows and hands. Then moving to my feet and ribs. It is easy to forget about these feelings when the medicine is working so well. Fatigue is a biggy that has crept back in also. I am back to my weekly jabs now and am thinking that a drug free remission may not be in my future! But I am still smiling that I can function near normal with it.

[shareasmile in reply to shareasmile]

"My" aches.....lol

[Amy_Lee in reply to Snazzyact]

shareasmile , thank you for the information. We need more patients who had the experience on the drug free remission to tell us if this is the right thing to do. I will read more on the drug free remission material when I am free so that I have a better knowledge to decide later.

I met my cousin last night and told her about my disease. She said that she has a friend who has the same disease but most of her figures are bent now. She said her friend tried not to take the drugs including pain killers because worry about the side effects. I would say this is because she has not enough knowledge to decide for her own body and now ended in very serious pain these days. Apparently she needs to go for more serious kind of treatment now. My cousin said I did not seem to be like her friend at all though I have the same disease.

I know read up more to equip with the correct information is the key for us to move on with minimum adverse impact on our bodies.

[Hidden]

Thank you Amy for posting this.

[Amy_Lee in reply to Hidden]

Suzannedale,

You are also in remission, am I right? Were you also seronegative? I have been in search of this article after my rheumy declared that I was/am in remission. I asked if I could be drugs free one day? She said that it would take a long time to slowly reduce the drugs first and she had no promised on the drugs free issue. Therefore I tried to read more to see what next would come.

[Hidden in reply to Amy_Lee]

I am almost in remission ( I hope). The mtx seems to be helping me. Slowly, but surely I will be in clinical remission.

I was diagnosed seropositive in 2014. Last month I was diagnosed seronegative ( I have a new rheumatologist that wanted to re-do all my bloodwork)

I will be thrilled to be in remission with or without the drugs....but it would be nice to be drugfree

[Amy_Lee in reply to Hidden]

Once the mtx is working, slowly you will feel less pain and you will be toward the remission stage soon. Just make sure you work closely with your rheumy to tell him the truth of what you feel and how you feel, I am sure you will be there very soon.

Very sad to say that to be in drug free remission is too risky. I am very worried though I like to be one of them.

[Hidden in reply to Amy_Lee]

Yes I hardly have any pain now. My swellings are also going down...Funny how naive I was to believe that remission would happen overnight.... It's been since mid September that I felt the mtx working.

I think there is nothing wrong with slowly decreasing your dosage of meds. (With the advice of your rheumy)

I would be OK taking a lower dose of meds for life if I could remain in remission. Only time will tell, but yes it is very risky.

I seem to recall Cathie being told she could be drugfree once she was in remission. Then when she went drugfree the disease came back fast and hard.

[Amy_Lee in reply to Amy_Lee]

I was almost back to normal after 1 year treatment. But my rheumy wanted to observe me for a few more months until he finally declared I was/am in remission.

The process is slow, you need to be a bit patient with yourself. Also, very importantly, we must tell the truth when we see our rheumy. Some RA patients would rather lie so that they can take lower dose of mtx. I find this is indeed not wise to do so.

I have a friend here who was in remission for many years, recently her RA relapses and it hit her hard. She is in great pain now. I am certainly very worried.

Read this, we have to think twice of drug free really.

arthritis.org/living-with-a...