Thursday, May 31, 2012

Need Remission Reality Check

By travelluver Friday, February 13, 2009

I've heard that us RA patients can have remissions but after 4 years with it, I haven't had one. 1st year did the steroids as needed, then went on to Methotrexate, then onto Humira for the last 2-3. Right now I do the Metho. once a week, Humira every 2 weeks, steroids as needed, Celebrex rarely, pain meds as needed. I have seen improvements after going on the Metho. & Humira, but no total remission where I felt like I did before RA. Is that even a correct idea of remission? Is remission, just better, or is it more like the normal life before RA?

My Dr. seems happy with me being on the Humira & Metho. but seems leary to change me on another Biologic, as if they are more dangerous with side-effects? At this point I figure I'm already taking dangerous meds but am weighing the results of a life with them or being totally miserable without them. But anyway, I'm curious about the people on here, can you chime in to how long you had RA before a remission, did you ever get one, if you did, what were you taking to bring on the remission, was it from a change in meds? I just want to face this realisticly. I don't want to get my hopes up for a remission if it is more of a rare thing, or patients don't tend to get them in the first few years of RA. Thanks for your info.!

Lene Andersen, Health Guide
2/16/09 11:58am

Although it is possible to have a spontaneous remission or a remission induced by medication that sticks around after you stop taking the medication, they're rare. When they happen, they can last for months or years, but the RA tends to come back.

 

RA is a chronic autoimmune disease and for most of us, that means it needs to be treated on a permanent basis in order to be suppressed sufficiently that we can get on with our lives. With medication, it is possible to live a fairly normal life, although you will likely have to continue to make some concessions to your disease, pain levels and fatigue. The good thing about medications is that they keep pain and fatigue levels down, although depending on how long you had the disease and the amount of damage it did before it got under control, pain levels and fatigue can vary.

 

It sounds to me as if the medications you're on are controlling your disease fairly well and I suspect that's why your doctor doesn't want to change it. There may come a time in the future where your current medications no longer work as well as they do now and that will be the time to discuss increasing the dose or changing the

medication to another biologic. You may wish to discuss the matter in more detail with your doctor to get a better understanding of his treatment plan - keep in mind that it is your body and your disease and therefore it is important that you and your doctor on the same page in terms of treatment. You may want to check out our section on being newly diagnosed for more information and tips and tricks on how to manage the disease and the side effects of medications.

 

I've had RA for over 40 years and have had times of very active disease where there's been a lot of pain and flaring and I've also had periods of less disease activity. However, it wasn't until I started the Biologics (first Enbrel, now Humira) that the disease was suppressed to such a degree that I don't have any inflammation.

 

And lastly, pregnancy tends to cause a temporary remission in women with RA, although the disease tend to come back about 6-8 weeks after birth.

 

2/18/09 11:29am

Hi -

     I have read quite a bit about RA meds and the biologics.  Supposedly, if the first one works well, the second will not work quite as well.  If the first one doesn't work well, the second may be an improvement.  So the doctor is following the research, most likely.

     I have wondered if I will need to try another one at some point...

 

I've said some of this elsewhere, but regarding remission. My RA was caught really early (though I did have wrist damage).  I wasn't sure I wanted to go on any meds, from what I heard, but I got the scare treatment from my rheumatologist who said I could have permanent damage/disability within 2 years.  Turns out he was right, but it took some time to find what was right for me, and some damage occurred.  I had 1 infusion of Remicade (reluctantly because I was terrified). I had bad ants-=under-the-skin-type itching for several days afterward (1 benadryl made it disappear within 10 minutes each morning).  So the next infusion 2 weeks later (loading dose), they put 100 mg benadryl in the IV and told me to take benadryl the 3 evenings before and 3 evenings after, to ward off any allergic reaction.  I was so disoriented by the 3rd day after, I literally fell on my face in a parking lot, got back to the office, said I wasn't doing it anymore.  I'd given it a try.  well, ALL INFLAMMATION disappeared during the next 7-10 days.  WOW. I guess I would call that remission.

So I knew it did work.  When it wore off 8 weeks later, I couldnt even stand on my ankle - without the pain, I didn't even know the orthotic I got in the meantime was wrong for me (non-Rx).  The wrist pain returned.  I got an ankle brace, went to the orthopedist, and was on a long path to the surgery I finally had last year.

     Eventually I started Enbrel, my choice, same rheumatologist.  First injection at dr's office, only very very slight headache (had been slightly spacey with remicade). Second injection/first one on my own, I had anxiety attack, was not really prepared, but got through it.  Yet, 3 days later, I couldn't wait to take another dose, I can't even tell you exactly why.  It revived something in me.  I felt better after a week. (fast responder)  I did have trouble with sinus irritation/infections, and later found i had some allergies I hadn't paid much attention to, and that problem is under control. 

With Enbrel, I got back wrist flexibility (for 2 years, until damage broke through one of the wrist bones) and ankle was better (eventually needed surgery, however, on tendon).    I was able to go off Enbrel for six weeks during the summer after I'd been taking it for a couple of months. I would call that a remission.    Each time I've gone off, however, it's been less time until I need to be back on.  Last year when I had ankle surgery in February, my dr. told me to stop Enbrel 2-3 weeks before and after.  Just to be sure, I went off 4 weeks before and after -total 8! (it was very invasive surgery of my ankle).  By the time I went back i had tripled up on my 100 mg Celebrex and was comtemplating 4/day.  In June I had carpal tunnel release on other wrist.  I went off 2 weeks before, and started up again only 10 days after (didn't ask, had to, pain!)  Luckily all was OK.  I have found that my instinct/intuition is pretty good on this stuff, and get into trouble only when I ignore it or wait too long!

      I was never given methotrexate or prednisone, my liver enzymes were high when I was diagnosed, and I already have low boen density (though not quite into osteoporosis yet).  I have wondered what I will do if things deteriorate - maybe antibiotic therapy if all else fails.

     Am having a lot of trouble with stress/sleep/depression at the moment.  this has not always been the case!  It happens as/when the Enbrel is wearing off.

     Would welcome any feedback from any interested party.

Ellen

57 years old, 25mg Enbrel 2x/week, 100 mg Celebrex 2x/week approx. at the moment. Cyclobenzaprine (Flexeril) when needed. Some sleep med occasionally.

 

2/18/09 12:12pm

Ellen, Thanks for your info. Every bit of personal experiences helps me get a realistic idea of how I'm doing too. I have went off the Methotrexate & Humira as well for surgery. Before that I was thinking I wasn't sure it was doing much but after stopping, I started to swell almost immediately & on a daily basis! Once I started back then the swelling quit. That convinced me to stay on them and not change but time has passed and maybe I am just getting antsy again for a bigger improvement.

But recently, this past week I'm swelling in hands, feet, even my calves feel swollen & like small contractions of the muscle-weird I know. Plus my eyelids & face swell too. Do you or anybody out there reading this ever have swelling of your eyelids & face? Mine sometimes well so much that my eyes are almost closed in the mornings?  I've been up for a few hours now & my eyelids & everything else are still swollen. We have had a change back to cold weather though so this could be the trigger. I'm trying to hold off on the steroids as much as I can but when I get into this pattern it's usually the only thing that works on me to break the cycle of swelling. Thanks for listening!

2/18/09 12:25pm

I have not heard of any face/eyelid swelling, that sounds very serious to me, possibly an allergic reaction.  If it were me, I'd be on the phone to my doctor right away.  If your throat started to swell you'd have a real problem.  Face/eyelids are not joints or large muscles.   The one time I started to have an allergic reaction (to Levaquin, an antibiotic, when I had pneumonia), I had this weird feeling of lips/tongue swelling, and tho' i couldn't see a lot, I took a Benadryl just in case.  later my doctor said, don't take the same drug again, it will get worse each time, and then become serious.

So - I would check this out with my doctor, asap.  This does not sound like arthritis.

Best wishes, and let me know how you're doing!

Ellen

2/18/09 12:32pm

I have Fibromyalgia as well. But I have told my Rheumy about the eyelids & face swelling. This has been going on for about a year. It doesn't happen everyday but I'd say every other week or so, sometimes just for 1 day or for a few. It never happens by itself, always with the hands, feet, & other areas swelling too. Rheumy didn't have a problem with it, chalked it up to the inflammation w/ RA. I haven't ever had throat swelling so maybe that is why he dismissed it? I've learned to live with it but it is scarey when the eyelids are almost closed!

2/18/09 12:45pm

Hmm, - that's a new one for me.  I have some Fibro, and I have heard some very strange stories of unexplained symptoms.  And had a couple myself, but nothing as scary as that.  So - I'm glad you're OK.  Will look around and see if I can find anything else relating to it.    OUr amazing bodies can be our best friend or worst enemy!  But we can't *divorce* them so we've got to make the marriage work somehow!

Do the steroids reduce this swelling?  Not that I'm recommending it, just curious.

Thanks for writing, keep in touch!

Ellen

2/18/09 12:54pm

My body is my worst enemy for sure! It LOVES to betray me! LOL

On your question- yes, the steroids always take the swelling away or shorten the syptoms of any of the swelling I have no matter where it is. I just tryyyyy to not take the steroids if I can because they drive me into a starving eating machine! What is that saying....darned if you do & darned if you don't. Well, my typing time is over....hands going numb. It was great talking to you....I'll look for you on here in the future. I try to get on everyday & check email & check this website.

2/18/09 12:57pm

Hi - don't feel you have to reply right away at all... I understand that!

Just looked on wrong diagnosis.com about facial swelling, apparently it's alot more common than I realized.  Sometimes allergies, sometimes a possibility of lupus (one can can lupus along with RA).  Other times, no one knows.... well, I'm glad you're not in danger.

I have had funny 'flash rashes" as I would call them.   One minute I look in the mirror, it looks like a red rash.  a minute later it's gone.  Go figure.  I'd forgotten about that one.

Blessings,

Ellen

4/ 7/09 12:31pm

I am on MTX and 10 mg of prednisone daily.  I wake up with puffy eyelids and bags under the eyes several days a week.  It gradually goes away after I have been up for a few hours.  I have tried to figure out if it is tied to anything I eat, drink or do in the previous 24 hours, but I haven't found a specific connection. 

Anonymous
Anonymous
9/25/09 9:40am

I've been living with rheumatoid arthritis for 7 years. I was diagnosed when I was 19 years old. I've never gone into remission. I'm currently taking plaquneil. methotraxate and enbrel. I was doing remicade injections before the enbel. When I first started taking remicade it really helped me but after a couple of years the posivtive effects wore off. The meds help but they still don't take away the pain completely. The concept of remission seems hard to wrap my brain around but I believe it's possible. It hasn't happened for me but maybe one day...

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By travelluver— Last Modified: 12/19/10, First Published: 02/13/09