? about RA progression | Arthritis Information

 

I have questions regarding the progression of our lovely disease.... I was diagnosed within a year of becoming symptomatic back in April '07. My rheumy told me we caught it early. I started on plaq, but added MTX and Enbrel within 6 mos. of starting. I have been on this protocol for almost a year now, continue to be symptomatic, and have more symptoms popping up. I am showing signs of deformity in my feet. Is this just the normal course of things? I thought that since we caught it early, and treated aggressively, I would have avoided (wishful thinking) things getting worse and worse. It's obvious that I haven't gotten to the right mix of meds yet, but I am wondering if when I do get to the right combo if I am just destined to have things keep progressing? I read that the most damage occurs within the first couple of years. Is that true for the people here? I just want things to level out a bit. I just recovered from back surgery, and now I have my arch collapsing in my foot at rapid speed. I creek, crunch, swell and hurt in a new place every day. I am feeling like if this is happening with the amount of medication I put into my body each day, what's the point of taking the meds?

Reading this back is kind of a downer. I don't mean to sound hopeless. I just really want to understand how this works. On the other hand, maybe ignorance is bliss. Thanks for any input!      I really don't know the answer. I find this disease very very confusing. I read a lot of contradicting information.

graciesmom, its very hard to understand how our RA is still doing so much damage and we hurt still even though we are taking our meds. If you are feeling like this on your current meds maybe you need to make an appointment to see your rheumy to change something or add something else. It can take a few years until the right combination of medication is prescribed. I have been on most and I still get sore and tired, but have learnt to cope in my own way, you will as well, its frustrating but please vent on here anytime you feel you need to

Maybe you should point out your concerns to your RD and maybe it is time for a meds change. How about trying an IV biological? Might get all those symptoms in check.

I wish I had all the answers for you.

When I'm miserable, I complain to my RD and he changes my meds.  I do know when I last added Enbrel, I had about 10 months of no pain!  I loved it. 

I definitely think you should talk to your RD.

Graciesmoom,  What are your doctor's thoughts on the increasing pain and damage?  Have you talked about a change in meds, increasing MXT?  If you haven't talked to your RD about this you need to make an appt. and discuss it.  Ask questions about the meds you're on and also about the IV biologics or Humira if you haven't tried it. 

Progression is different for each person.  There's no standard to base damage and progression of the disease. 

It took me over 4 years and many different med. combos before I reached clinical remission. I also have PsA so my case is a little different.  My best advice is to talk with your RD and if you're not satisfied with the answers then seek a second opinion.  Lindy

Hi Graciesmom, I wanted to tell you about a visit to my GP once after diagnosis of RA.  I was angry as the pain was overwhelming and said to him, "I don't see the point of taking all these drugs especially pred if they are not working", his reply was - "Imagine how bad you would be then without them?"  I always remember that now when I get fed up with my meds, it is true as I tried to come off on my own by weaning the pred and I was bedridden, so try to remember that even though you are still in pain, the drugs are a godsend, I don't know how people managed before all these wonderful drus, it must have been tragic for them.  All the best, Janie.Gracie - I hear you.  After 18 months of MTX, plaquenil and 5 months of Predisone, nothing had changed.  Since switching to minocin and from synthroid to armour thyroid, its been a miracle.  So, I have just learned about switching meds.  If it isn't working, demand a change.  Take care and we are pulling for you.  CathySometimes the TNF you are on isn't the best for you. Like maybe Humira or Remicade would work better than Enbrel. Also they do keep adding meds too. See your doctor soon, complain loud and clear. They can increase doses too. It can take a long time to get the right combo, so get back to your RD for a change.


Thank you for the responses and words of encouragement. At my last rheumy visit in September, I did talk to my rheumy about my meds. At that time however, I was on the tail end of recovering from two back surgeries, followed by meningitis, and osteomyelitis. I was off of my meds for about 6 weeks in the summer while all of this was happening. I had only been back on Enbrel not quite 6 or 7 weeks when I spoke with the doctor. I asked about going to twice a week on Enbrel, but he said insurance wouldn't even
consider it if I hadn't been on it 6 months continually. I started Enbrel in January, went off of it the third week of May, and started back on it in July. I was really close to the 6 month marker prior to my first
surgery... So, I have been trying to be patient and just waiting it out until I can add another dose of Enbrel.
I have tried Humira before with no effect after 6 months. My rheumy has gradually increased my MTX 17.5 mg to 22.5 mg over the course of the last 1 1/2 years. He has never prescribed pred for me. My range of motion is good and swelling comes and goes, but isn't horrible - I know I am lucky there. It seems like whenever I go for my appointment, I'm not in very bad shape. That sounds horrible, huh? But I don't think he thinks I am doing too poorly. I am happy about that, but I know I am getting worse. I am due to go in next month, so I need to be urgent with him when I talk with him next time. I feel like my path is definitely leading toward the iv infusion. I'm just not good at the waiting game.

On a positive note, I think my back feels better (finally) than it has in about 20 years (and I am a young 42
). Janie you are right, who knows what I would have without the meds?

Thank you for helping me muddle through this...Welll...I think it is different for everybody.  I didn't start to notice damage 3 or 4 years in.  My feet were damaged first.  It took 8 years for my hands to become noticeably damaged.  I was on nsaids the first 2 years, next plaquenil and prednisone, next arava, prednisone and enbrel, next humira, prednisone, and mtx, loads of steroid injections, rmeicade, kineret, orencia, now rituxan.  I am sure I am leaving something out but I know a lady here in GA, only takes plaquenil, has occasional flares and absolutely no joint damage. so it really does just depends on the individual. what are the docs saying?  are they calling it aggressive?  They call mine resistant to treatment and severe RA.

hope you find the right therapy soon.  stay active, maybe get in some physical therapy. eat healthily. get enough sleep which is very important for us.

take care.

Shelly - I was diagnosed sero-negative, but tested positive anti-ccp which my dr. said anytime the anti-ccp is positive you have potential for moderate to severe. I started out mild, but progressed pretty quickly and believe I am moderate. I am sorry you are resistant to treatment. I am fearful of that, but I know I have many more options to try before I lose faith. I have pretty significant damage in my foot which has progressed very rapidly over the past year. Steroid injections don't seem to relieve the joint in my arch at all anymore. You are right about staying active, although it's sometimes difficult to have the energy. I feel full of excuses for the first time in my life. I used to have a huge amount of will power and determination. I feel like the antithesis of that now. I try not to get down about it, but it is so hard not to have the strength or energy to accomplish 1/10 of the things I used to do. It is probably a good lesson for me to learn to slow down a bit. I am not wallowing is self-pity, though it may sound like it. I am just trying to adjust to my new normal and feel like I am still able to accomplish things that are important to me. I have started to ramble, sorry. I have had RA for almost 17 years, and my first RD told me that the disease "waxes and wanes" like the moon. In other words, sometimes you're all swollen and racked with pain, other times you can enjoy life a lot more and do things you though you'd never do again. When it's bad I try to remember it'll improve, and when it's not so bad I remind myself not to take on new things that will make my life difficult in my next flare.

Hi Graciesmom,

Don't worry about sounding like self-pity or down, at least not with me.  I know this is just a temporary state and you will be back to being motivated once you have processed all the surprises of RA.  It is really scary to have this disease. it is constantly changing and we are constantly adjusting.  we are entitled to some down time every now and then, why not.  I have those days too.  I think we have more than our share to begin with. because we deal with everyday life plus a potentially crippling disease on top of dealing with life and life is tough all by itself.  .  so  don't beat yourself up too bad. It's makes us stronger, that's for sure. Just spoil/pamper yourself from time to time. 

for me it is being out in nature, feeding the birds, I love carnations, so having fresh cut carnations or a colorful bouquet to place near the computer makes my day, coloring, water painting, etc., other things I do when the weight of the disease is just too much to bear and I am stuck indoors. gentle hugs.  Hang in there. take care.

Hi Janie,

Yes, this is true, especially in the beginning. and even now there are 8/10 pain days, and there are 9 to 10 out of 10 monster days. 7/10 days are a distant memory and a goal I aim for now. for a small percentage of people who have ra the pain seems constant. learning techniques to cope with the pain, whirlpool therapy, heat pads, pain pills, preferably an ra therapy that works are all helpful with coping. all in all "practicing" a positive outlook is helpful too.  I do believe mindset is key to coping. however, I sure would like a CURE for RA soon!:)

thanks. take care.

 

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