While everyone is different, I will say how it is with me. For me, I had awful & horrible pain in the balls of my feet. There was also stiffness and swelling in my hands, but the feet were so much worse.

The drugs have helped my pain a great deal, but there had still been some swelling, especially in my hands. I am on my 6th biologic, Retuxin, by infusion. This seems to be helping the most, which is good, because I am running out of options. At this point, I would not say I have that much pain - more like discomfort.

Besides the biologic, I am also on Methotrexate, 4 pills a week. If I go any higher in the dosage, so do my liver numbers. I also take folic acid - 2 pills a day, and vitamin D (5,000 units) a day.

I have never taken prednisone, and am trying to avoid it if possible. Celebrex seems to help a lot, for me.

2 months ago, My shoulder started hurting a great deal. The Dr gave me a steroid shot into the shoulder (rotator cuff area), which only helped about 30%. He ordered an MRI, which showed bursitis and tendonitis. I was getting physical therapy twice a week, which has helped. That, and Celebrex.

My rheumatologist has been very aggressive in treatment, which I appreciate. I have been on Enbrel, Humera, Orencia, Cimzia, Actemra, and now Retuxin. I feel fortunate that our insurance is quick to approve whatever drug my Dr has ordered for me.

Maybe Enbrel will be the drug that does help you - it sounds like it is. That would be fantastic.

Trying to think positive; I feel very fortunate that this disease did not hit me until I was almost 60. My children are grown, and out of the house. I am self-employed, work out of my home. It is very flexible for me. If I can not sleep at 2:00 a.m., I can go to my office, and get some work done. If I want to take a nap at 2:00 p.m., I usually can.

My hands do not grip like I would like - I drop a lot of things. That can be frustrating for me. However, if I am eating food, our dogs are right at my side, to make sure they will do their very best to make sure they clean up the mess! On days where I do have more pain, I take Celebrex. I am sure that prednisone might help more, but the Celebrex does tide me over. My Dr has said, if I ever need to try it, just give him a call, and he would order it for me.

1. In the beginning I would get acute flares in one joint only at a time. Now a few years later and with Humira, MTX, and Prednisone on a regular basis I get a lot of joint aching from various joints especially when I am tired. I only get those single joint flares from Hell about once every 6 weeks or so. Those nasty flares have always taken 3 days to subside.

1. Yes - as I explained above. There seems to be no rhyme or reason - all pain weather the ache or flare is random.

3. We are all different. For me after being on the above meds for 4 years now (Humira for 7.5 months steady) my acute flares have been reduced from 2-3 per week to one every 6 weeks or so - huge improvement. I still get those bad days and also get the dreaded fatigue days a couple times a week. The aching legs and/or arms is a nightly occurrence now however.

It sounds like your med line up is working well for you. In my case, what you are experiencing right now with what your abilities are is something that I would love. I don't think I can ever expect to have that much function ever again.

But that's just me. As I said - everyone has different results. When this all started for me I never in my life thought it would take me out of work and have me sitting in a chair most days.

Trying to understand the disease has been a object of frustration for me. The way I've always been in my life, if I understand what is happening I can find a way to deal with it. I've pretty much settled down now and know what to expect after 4.5 years of this journey - and it's not what I would like it to be. Never being sick a day in my life before this makes it very hard to understand and deal with it. 5 years ago I would have never guessed I would be where I am now.

But I try to live by my motto - it is what it is. One of the biggest problems is not being able to plan anything farther out than today. I don't know how I am going to feel tomorrow or next week or next month. Making those doctor appointments for 3 months out is a huge gamble as I never know if I will be able to make the trip on that certain day in the future.

Sorry - guess I can't really answer you questions that well because the way I see it, you just don't know what the disease is going to throw at you tomorrow or the next day.

I only take prednisone two or three days at a time. And it's just 2.5mg at that, if that.

If you have joints that bother you such as a trigger finger or an ache that just won't let up every day, on your regular visits the rheumatologist, you can ask for a steroid shot (or inquire what you can expect from them).
I have had two fingers injected when they were the only joints still bothering me. After the injections, they never got "that bad" again.

Sounds like you have a great plan in place.

Thanks everyone. From my short experience with this disease I can say that some joints are just achy and some joints have acute pain. That changes over time as well. I can also say that while prednisone does wonders for me I can't tolerate it for more than a few days without getting manic. It took a couple months to get that when when I was first on it. Now it takes about a week.

Also, as much as my Lodine has helped in the past I don't think it is as effective as it used to me. I may discuss using Celebrex with my doctor but she's likely to say that all NSAIDs are the same. I can hear her now!

I'm going to hope and pray that I get a little more relief from the Enbrel. I know for sure that I feel better home where I can rest more and where I have less stress than at work. I have the opportunity to start a small business at home repairing computers but I think it's in my best interest to put in another year and before I look into disability retirement. I don't even know if I'd get approved but I imagine my chances increase if I make a reasonable attempt to work full time even though I'm exhausted and in pain.

I hate to say this because I know that it could be much worse but I am really down. The pain, the fatigue, the prednisone and the fear of my future health have me more depressed than I've ever been. I'm glad I met you folks and this forum so I can share my thoughts and concerns and reach out for help.
Thank you!

Hello Greg, I am only 10 months in and still don't feel my treatment is optimized although I guess you could say that I'm getting a little more comfortable with my new normal. At first the pain was acute usually in 3 or 4 spots at once lasting 2 or 3 days and then the joints would be pain free and moved on to another location. Most of the time it would be the same joints on the other side that would flare next. I was a total mess and didn't know what tomorrow was gonna feel like. It would change within a couple hours sometimes. At first it was mostly my hips, and shoulders that gave me the most problems along with my fingers, and wrists. Most days now it's just a lot of stiffness and pain in my wrists and finger joints. I also still have minor aches in my hips, shoulders, and feet but nothing like it was in the beginning.

I understand where your coming from with work and the work around home. I just went back to work 2 weeks ago and I'm taking it day by day and don't know what the future is gonna hold. I use sledge hammers and lots of other heavy tools on my job which makes it extremely difficult. I do pretty decent on most days once I get everything loosened up, and some ibuprofen. I have taken etodolac, diclofenec, and indomethycin. Good old advil does the trick for me.

Every person is different with the disease. We all hurt the same but totally different at the same time. What's helps and what makes it worse I can't figure out. Some days I overdue it and pay for it. Some days it's like the more active I am the better I feel. I count myself lucky as I have not had any fatigue from the disease at all other than a day or two after my mtx when I first started it.

As far as the pred goes you will find a lot of people take it differently. Some have taken it for years and know what works and what they are doing with it. I would check with your rheumy on this one. To bad it makes you manic. Strange how these med affect everyone different.

Sounds like your on the right track with your meds and wishing you the best. I use to flood the board with questions a few months ago and didn't ask half of the the ones I had. Haha. This board has been a blessing for me. They are some great great people here and a world of knowledge for people like us that's just learning the ropes. Good luck

PW39,
Thanks for sharing! If you can use a sledgehammer then there's hope for me working on my lawn. It puts things a bit in perspective as I don't think I'd be able to handle a job like yours right now. Best of luck to you!

One final question for everyone:
What is the deal about morning stiffness being a major symptom of RA? I feel no worse or stiff when I wake up than I do at lunch. In fact I feel better after a good night's sleep and worse as the day goes on. Does anyone else feel the same?

At the point where I went in for my first appt. with the Rheum, I would be stiff and hurt for hours after I first got up. It took 2-3 hours for my feet to stop screaming/burning. It was also to the point that if I sat still for more than 30 minutes, my feet would hurt. A lot! Since I do a lot of driving for my business, this was not a good thing. I live in a small town, doing some bigger shopping means almost an hour drive. Even the closest fast food restaurant is 45 minutes away.

When I go to my Rheum appt. (2 hours away), I always have to fill out a pain question sheet. On that, it always asks me how long my pain/stiffness lasts in the morning.

I am not a good sleeper. Getting 5 hours of sleep would be unusual. It is usually closer to 4 hours. As I said earlier, it isn't that I am in pain so much as discomfort.

As far as the morning stiffness - that question seems to be on every form I fill out at the docs plus they ask me every time. I'm like you and feel no different first thing in the morning than the rest of the day.

But I did experience that morning stiffness in the very beginning before starting on any RA meds. I think it is the one symptom that the biologics take care of easily. I haven't had that morning stiffness for years now.

Hi Greg,

Interesting questions - and I asked all of them myself. We RA sufferers are different in our disease path but have a lot of things in common!

I have pain that fluctuates from joint to joint. Not all joints are painful at the same time with me. (Thank goodness) I do have low chronic pain at times with more acute, sharp pain in another location. The meds work, but I have yet to find something that makes me completely pain free. However, I am much better than I was when I first went to the rheumy about 5 years ago. Any progress is better than none in my book.

Morning stiffness - I had stiffness in the morning when I first went to my rheumy. It lasted about 2 hours at that point. Since then, and with use of my meds, I do not have much morning stiffness on a continual basis. I think the meds have certainly helped me in this area. When I have flares, I have more morning stiffness now.

Prednisone - I do well on a 5 day taper. I have been on many tapers of differing days and amounts. If I go longer than 5 days, I find many more side effects that I do not like.

It sounds as if you are on a good course and that the meds are starting to make a difference. I truly hope that you continue to do well. I completely understand your concerns about your future health. We all have them. I try my best to concentrate on the things that I am able to do not those that I am unable to do. For instance, I have played the piano all of my life. In the last 2 years, I have been unable to play due to pain and stiffness in my hands. I got tired of walking past the piano everyday and being reminded of my inability to play. So, I sold the piano so that someone else could benefit from it as much as I had in the past. I never think about that anymore. I enjoy other things instead. I refuse to let this disease get to every part of me. I will find enjoyment in the small things in life!!

Don't ever feel bad about posting or asking questions. That is how we learn from one another. This group has been so great for me. It allows me to learn new ways to cope and to also feel that I am not the only one in the universe that has health problems. Keep asking questions and keep encouraging others along the way!

Hi Greg,
Since we're all so different the answers you get may be all over the place. I'm in my 6th yr so a bit further along my journey than some & less than others. Honestly, I try to live day to day and not look too far ahead. Things can change too much and I'm happier for it.

The length of morning stiffness is one of those measuring sticks drs use to gauge disease activity. Less stiffness the less active the disease is supposed to be. By active I mean inflammation. That's the demon plaguing all of us and is the cornerstone of autoimmune disease as a whole. With RA, the immune system is short-circuited and attacking healthy tissue. Inflammation is the weapon it uses.

Pain on meds is still usual..even pain meds. It's like a game of whwck-a-mole somedays. Meds just control the progression but doesn't necessarily wipe out all the pain. In 6 yrs, I've never had a pain free day. I don't have flares either. Mine is a pain baseline of a "6" with good days & bad days. My swelling has been active & severe for 14 months. When the meds aren't working, it's like being stabbed with an icepick 1000x a day in random joints all day long while having the flu. Mine also started in my feet and then went after big joints like my shoulders. It took 3yrs before settling in my hands. The mtx helps my wrists & hands the most. I'm high activity with RF & anti-CCP off the charts. My case isn't the norm by any stretch. I also have psoriatic arthritis & my tendons/ligaments/attachments are being attacked along with muscle & spine involvement.

It sounds like you have a plan in place that's working for you. There's a lot of unknowns with AI diseases. All you can do is trial & error with the meds and hope to find the right cocktail to keep you comfortable and functional. It's progressive & seldom does one med handle everything going on.

I've never taken celebrex but I've been on meloxicam/mobic since dx'd. I take 7.5mg AM & PM. That seems to help and 2 pills is better than several. I also take pain meds, Remicade infusions, mtx injections, gabapentin for nerve pain and supplements- 5000mcg vitamin D, super b complex, folic acid and a multi vitamin. No processed foods or soda & eat fresh as often as possible. I have 4 different types of pain that I treat daily. It's a ton of meds a day but it usually keeps me out of bed most days & out of a wheelchair (so far).

Take care and I hope you can still do the yard work that seems to make you happy. We need things/hobbies that bring us joy. It keeps us out of the Black Pit and gives us a reason to get out of bed in the morning. This disease takes a lot from us & the little things matter so much. Chronic illness & pain brings a lot of changes-physically & emotionally.

Emerald

I was diagnosed almost four years ago. We are all so different! If your experience with Enbrel is that you are improving, that may continue. Things might just keep on improving. My experience is that DMRDS work slowly. I have been taking Orencia for almost two years, and I am very slowly, still improving.
My RA has moved around, used to be hips, knees, wrists and hands. Then it went to my feet, but they seem to be doing better. My knees and hips are no longer a problem, generally.
I no longer have morning stiffness, I only get it in the afternoon. Anyway, I could go on and on about RA moving around, but I will cut that one short.
Orencia is my third biologic. Be mindful should you start to decline, they sometimes will suddenly just stop working. But as long as things improve, keep on the treatment plan you have.
Lynne

Thanks everyone. The thing is I don't think I've ever had morning joint stiffness. So what does this mean? I do have symmetrical joint pain but in the case of my feet the pain seems only to be in my right foot. The left has been fine while the right has acute pain. I also have a negative anti ccp and some mild blotches on my face that look like psoriasis. The rheumy wants me to have them checked by a dermatologist to confirm if it is psoriasis. With an Rf factor of 49 and very symmetrical joint pain and only swelling in one digit (my right thumb and it hardly looks like a sausage) I think that the diagnosis of RA is correct though I've wondered since day one if I have psoriatic arthritis as well. I do recall more swollen fingers in the beginning too. My Vecra DA score, for what it's worth, is 45.

Either way I'm going to push myself to get out in my yard like I did today and avoid "the pit" because I was pretty close to falling in a couple days ago! Thanks everyone and keep the advice coming.
Greg

Yeah just keep after it greg. As far as going back to work so far I'm just lucky that I work with good people and friends that help carry the load and look out for me on the bad days. Your lawn looks as good as any I've seen. I live in KY and you have the best looking bluegrass I've ever seen. Lol. Good luck!

To answer 1-3 from my perspective it would be yes to all 3.
We all react different & can have have different degrees & symptoms.
So for me Celebrex did nothing but I know for others it's been a huge help. Good old prescription Ibuprofen for me. Had good results with a newer anti inflammatory but insurance would not cover.

Mornings are the worse for me. Depends on the day what will bother me.
I've had head to toe 24hr pain. Then again days with just hands & feet just enough to be aggravating.

Really if you have a single doubt in your mind about your diagnosis get another opinion. If I'm not mistaken the treatments the same but of course you want to know.
Glad Enbrel is providing relief. It helped me also & as mentioned stopped just under 2 yrs. then again many continue with the same med for years. After reading from others here I realize how lucky I was to have relief from Enbrel as it was the first treatment for me.
So many play the waiting game in attempt to find what will work.

Smart move educating yourself. Understsnding this disease is difficult.
I'm not sure the doctors fully understand or acknowledge all the complications involved.
Good luck & hope you do continue whatever it is your heart desires.
Sammy