How many good days do you have? | Arthritis Information

Just wondering how many good days a week the average PA person has. good meaning ,not having to rest,able to do most the usual activities,work and make dinner. grocery shop and clean etc. Bad meaning just able to work that day or laying around most of the day. this is for people who have been on there meds for a while.

kel

Up to 6 months ago I had probably one good day out of seven. Currently, it's five good days out of seven. Taken me a long time to get there (over 4 years) of dmards and biologics. Eleven years since diagnosed. LindyLindy, what changed 6 months ago? Did you change meds,increase meds,anything different to your diet?

There are good days??

Hi ANB, I switched from Remicade to Humira and it took 6 months of decreasing symptoms to reach clinical remission. I've been in RA clinical remission for 6 months or so. The psoriatic arthritis is still active but isn't reflected in my labs or on xrays. Life is good right now and I'm so hoping that remission continues. LindyWhat exactly constitutes remmission? Is it when the pain and swelling go away or just the pain?

On physical exam: no pain, no visible signs of inflammation or swelling. Labs are all normal, and MRI shows no synovial fluid. There are some other signs but these are the main ones. Somewhere on the forum I've posted the clinical remission criteria but not sure where I posted it. If I find it, I'll post again. Lindy

So if the pain subsides but you still have swelling, that means you really aren't in remission? Also x-rays do not show signs of synovial fluid do they, or is that just through an MRI? What are they checking through an X-ray?Xrays show damage, MRIs show if there's synovial fluid. If you have swelling, no you're not in CR unless the swelling is from longterm damage. To be in CR you have to meet ALL the criteria for CR. You are headed in the right direction but not quite there.

morning stiffness less than or equal to 15 minutes

no fatigue

no joint pain

no joint tenderness or pain on motion

no soft tissue swelling in joints or tendon sheaths

erythrocyte sedimentation rate -(a blood test which measures inflammation) less than or equal to 30 in females and 20 in males

While there is no way to determine who will achieve remission with therapy, patients with a negative rheumatoid factor and CCP antibody as well as a normal C-reactive protein (another measure of inflammation in the blood) appear to have a better outcome. In addition, patients taking combination therapy (e.g. methotrexate and a TNF inhibitor) are more likely to achieve remission than those taking either drug alone. Nevertheless, patients on monotherapy (eg. methotrexate only) still may achieve clinical remission. The longer the disease remains in remission, the less likey it is to become active again.

Linb or anyone........

Is having dactylitis considered long term damage and remission or active flare? I have had it for almost a year now and wondering if Humira & mtx at current dosages has stopped working for me.

Thanks for all the info Lindy... :)Hi Windyone, dactylitis will get better with being on the drugs. What doses are you taking, how often? You may just need an adjustment in meds. Have you noticed any change? Better, worse than when you started drugs?

Zanna, you're welcome.

It got worse after an infection in the same toe and I have had it for coming up on a year now. It improved quite a bit after I started my meds again when the infection was done but now it stays red and swollen. It is better than it was but will not go away. Pretty sure there is joint damage because it won't bend anymore at the joint nearest to the nail. Just the top portion of toe is still red and swollen unless I do alot of walking. Then I can't walk on it for a day or two. I take humira 40 mg once x 2 weeks and mtx 15 mg a week. been on that regiman for about two 1/2 years. I was down to 10 mg mtx at one point. The increase back up to 15 mg has not made a difference. Now my other nails are looking worse along with more joint issues. I probably need to go back in to the rheumy but the thought of increasing my meds is discouraging. I just wonder if the damage that is done will always be that way or if it really will get better by increasing or changing meds. Damage is there usually forever. Sometimes the drugs reduces inflammation and swelling and it makes the damage much less painful. With what you're describing I'm not sure what is damage and what is active disease process.

Fear this disease more than the meds......believe me I know. Like I said before it's taken me over 10 years to reach clinical remission. Two years ago I could barely walk, had to use a cane, a power chair and was limited. Now I golf and hike. I have damage but nothing I can't live with and I only reached remission when I started using Humira every week and now I'm injecting every 10 days and hopefully in a few months I'll be back injecting every 2 weeks. I wasn't going to accept anything less than clinical remission. I didn't just want to feel half way better. Lindy

Thanks Lindy. I don't the fear the meds as much as the disease. I will check with rheumy to get a final on answer on whether this is a very long flare of it the damage is permanent.

Will let you know....

wow didn't realise clinical remission was so definitive.

Have posted elsewhere but will try here as well. I've been on Arava for approx a year but have recently had the dosage increased to 20mg.

Have now developed a very itchy rash. Driving me bonkers. Have had a rash before but never this bad .

Lynh

Lynh, yes, clinical remission has a very defined set of criteria to be met. The reason for this is if there are any symptoms then you're not in clinical remission and damage is continuing. Google clinical remission.

You should call your doctor if you've developed a rash, it could possibly be a reaction to the increased dose of Arava and your doctor needs to know. Lindy

If I wake in pain, I am awake, thus I am here, its a great day Im sorry to say im not so enthusiastic.Remember one thing. These forums generally represent the downside of PsA or other types of Arthritis. People generally turn to forums such as this when looking for answers and advice on the pain or troubles they are having. Think about it. If you have a condition that is in remission it's unlikely you are searching or participating in forums. Fact is, your probably not even thinking about your condtion. The vast majority of people with PsA find relief from meds and live happy pain free lives. I have PsA and take 20 mg of MTX a week and have no pain whatsoever. Knock on wood!

there is no such thing as not having damage from this condition (Over time). I consider myself to be in control of my fate as much or more so w/o the drugs. do I have some damage after ten years, yep. Do I have bad days, yep. but I must say the damage from drugs was worse to live with than learning to manage day to day life. the drugs are designed to reduce swelling and side effects of the condition not guarantee remission. I found my own treatment regiment and control symptoms better than I ever had on drugs. you needs to fear the disease but you had better fear the drugs. you are putting your life on the line everyday you take it. this post was hijacked but I thought i'd post my 2 cents on this and "how many good days do you have" I consider a good day being made up of being able to do my daily routine. Work, Fishing, Hunting, Yard work, RC racing ext. do I do it pain free everyday? nope. I decide to get out of bed everyday, stretch, hot shower, and get moving and live life. when I was on drugs I was restrained chemically and unable to get going. Most people suffering from this condition are disabled from the drugs faster and more sever than the condition. What’s a good day? it is what I make of it.

Hi Lindy - Is the infusion session of Reimcade painful? Does it take 2 hours? Do you do it your self at home?

Billy
Hi Billy and welcome to the forum. The needle stick is about the same as for a blood draw and the actual infusion isn't painful. It should take about 3 hours for the first few infusions. After that it will take anywhere between 2 and 2/12 hours and no it can't be done at home. You need to be monitored by the infusion nurse and you need to be in a medical setting in case of an emergency reaction. Lindy[QUOTE=Ranger05]Remember one thing. These forums generally represent the downside of PsA or other types of Arthritis. People generally turn to forums such as this when looking for answers and advice on the pain or troubles they are having. Think about it. If you have a condition that is in remission it's unlikely you are searching or participating in forums. Fact is, your probably not even thinking about your condtion. The vast majority of people with PsA find relief from meds and live happy pain free lives. I have PsA and take 20 mg of MTX a week and have no pain whatsoever. Knock on wood! [/QUOTE]

There are several of us who are in clinical remission or have been in clinical remission who continue to participate in the forum. The reason is simple: We want other forum members to know there is hope and clinical remission is possible. If you've had the disease for a long time and were bed bound and developed complications from the disease then you think about it frequently, even if you're in remission.

Some of us have several arthritis related diseases and forgetting about them is just about impossible because when one is in clinical remission the other isn't. I was in clinical remission for RA and PsA for about 18 months but I continued to write about hope. I'm no longer in remission for either due to a gum infection that lasted for 4 months and I had to stop my meds. I'm hopeful that I can achieve it again. Lindy

I suffer every single day. I am new here but I recognize Ranger from another place... I am lucky to get one week every two months. I am on my fifth week of methotrexate though and am really hoping that improves.

I didnt know people with my disease could lead normal lives. To be honest I am more than just a little sick of waiting for these meds to work.

My rheumy told me there is no remission for PA.

Hi, Tim,

I'm in my early 60's and am slowing down as it is, so I don't really miss the days of high energy. I'm on 17.5 mg of MTX weekly and have been on the drug for 16 years. It took a couple months for it to kick in. Usually it's started at low dose and then ramped up as needed. For as long as I've been on MTX I have a "down" day about 36-48 hours after taking the pills. By that I mean that I don't do a lot of physically active things that demand a lot of energy. In short, I've learned to pace myself. I've never once in all these years since beginning MTX laid around because my energy was zilch. I may not be able to run a marathon, but I can walk 1.7 miles in 25 minutes EVERY day - which isn't bad for me. I still swim and sail. In short - there's nothing that I like to do that I'm not able to do.

Give MTX a chance. I'm sure you know to take Folic Acid, right?

This forum doesn't seem to get a lot of lurkers so check out the RA section of this forum. A lot of us with PsA tend to post there.