I am starting to feel better finally. Is It remission, I don't know, but I would like to stop taking my methotrexate 20mg per week & prednisone 2.5mg daily. I am not having any side effects at all other than weight gain but I am sick of all the pills. Can I stop methotrexate and still battle this RA pain in the ...? I really need a night out to party!
The short answer is no. The reason you're feeling better is because you are on methotrexate, which is a drug-induced remission. If you stop taking methotrexate, your RA will come back and flare again if that happens, you risk causing damage to joints that will affect your mobility in the future. Unfortunately, at present there is no cure for RA and you can expect to be a medication like methotrexate or one of the other DMARDs (disease modifying antirheumatic drugs) for the rest of your life. There is vast progress being made in RA treatment and it is certainly possible that down the line, there will be medications available that you only have to take e.g., once a year, but for now, that's not the case.
However, I'd still recommend that you take a night off and go out and have some fun - you're feeling better and that's definitely something to celebrate. Just remember that you cannot drink alcohol while on methotrexate, but in my experience, it's entirely possible to have a really good time while sticking to nonalcoholic drinks.
Thank you Lene for your response. I will try to keep focused, although it is hard at times. I am 39 and have ser- negative ra plus sjogrens. I am also on Restasis for my eye pain & burning. Because I am sero-neg I think maybe my illness is just a fluke. But I have been batteling this for 4 years and just dx this Feb. I also was seen by a rheumy at the age of 3 with the same problems. The doc then said nothing in the lab to indicate RA. Here we are 36yrs later. Thanks again, Pamela
there are many frustrating things about this disease - it can take a long time to get diagnosed, especially for those who are seronegative. So many are left to their own devices, with the disease creating more and more damage because doctors don't know enough about blood tests (we have a great post about lab tests and what they mean, including that 20% of people living with RA are seronegative). There are even some rheumatologists who refuse to diagnose an absence of a positive RA factor, which just boggles my mind (also, it makes me want to throttle people, but let's not talk about that!). it's hard enough too come to terms with having a chronic disease without having to beat your head up against the wall of physician ignorance. That said, coming to terms with the reality can be a very liberating experience - we just posted a link to an interesting article about a study that shows how acceptance can help you get on with your life. When you no longer stick your head in the sand about it you can focus on how to reclaim your life, making it about you first and the disease second. I highly recommend reading a book called The First Year with Rheumatoid Arthritis - last year, I wrote a post including a review of the book and an interview with its author. I've had RA for over 40 years and there were things in that book that I found very helpful.
Have you considered counseling? It's normal for people who have a chronic illness to every now and again need a little bit of help in adjusting and developing coping mechanisms. Counselors specializing in cognitive therapy can be especially helpful. you may also want to check out our area for people who are newly diagnosed - it has a bunch of posts on the various aspects of life with RA that may help you.
Lene, I completely agree with you. A bit of bio-feedback would be helpful. Can u believe there are no group RA meetings within 60 miles of my home but a million hospitals. In my experience, I need to talk to someone who understands RA. Most people including councelors are ignorant about the disease, not being harsh or anything. Infact, some docs don't either, only rheumys. I just want a normal life. Although I have been feeling pretty good lately. Which again misleads me to believe I will be ok without all of the meds. I know that that is a false statement though. And as for the docs that don't dx RA because of negative labs, shame, shame, shame. I feel it is a lack of confidence and experience that leads them to make those devistating errors. I am just glad I finally found the right doc.
First, I ned to give you the links I forgot about yesterday. The post about blood tests and our area for newly diagnosed. Sorry about that. You may also want to check out Arthritis Introspective to see if they list an RA support group in your area.
As for counsellors... they may not know much about living with RA, but in my experience (and I've seen a few over the years), a good counsellor who does cognitive therapy can go there, even without having had direct experience with people who have a chronic illness. It's a matter of skill - find a good one and they can help you through pretty much anything.
Lene, Thank you for the links. I did have a chance to review them. I will get busy looking for a support group soon. I am also sorry you have had to battle this for 40yrs. Here I am complaining and there are people like you who have truely suffered most of your life. I hope you are having more good days than bad. I am curious though, do you work. There are times I am affraid to persue a more adventureous occupation but am affraid of a flair. I currently work for my father who is an Internal Medicine Doc. Of coarse you know my job flexibilty is without saying. It has been wonderful, but he will eventually retire. Any job suggestions friendly to those of us with RA?
You know, I'm not a big fan of comparing degree of suffering - it invalidates your feelings. Within the context of your life, your experience and your feelings about it are completely valid, as are mine, yet, compared to a child starving to death in Darfur, I'm doing just fine. But that doesn't negate the fact that some days are really hard and much harder than they used to be or the fact that you have experienced real loss of ability and are therefore experiencing real feelings of grief.
The good thing about having lived with RA for over four decades is that it gives you perspective. RA comes and goes, it ebbs and flows and there are good times and sometimes bad, but throughout it all, life still happens and you live it. Hopefully most of the time, good medication will help you live your life with your RA muttering in the background.
Although I'm not a big fan of comparing "degrees of suffering", I am a big fan of shooting for the moon. I think it helped that my parents always expected that I would do my best, while still accommodating my disease. It meant that I went to university (I have a Masters degree in social work), I've worked in corrections and human rights and I am now pursuing my lifelong dream of being a writer - one of things I do is work as Community Leader for this site. I'm going to give you another few links - first to a post about working with RA that has links to resources about accommodation. According to the Americans with Disabilities Act, you are entitled to be accommodated in your job (e.g. by different ways of doing your job, flexible work hours, working from home, etc.) and that could be a great help to people with RA. Also check out my interview with Gayle Backstrom, author of I'd Rather Be Working - it's a terrific book about working when you have a chronic illness that includes a very interesting process called "Rethink, Refocus, Retrain" that can help you figure out where you want to go next in your career. You may also want to check out the post I wrote on going back to school, which also includes information about the accommodations you are entitled to within the educational system (e.g., longer time for exams, extended time to do your degree) that can make it easier for you to complete a degree. And lastly, check out my recent post about expectations and shooting for the moon. It may take you longer to get there, you may not go in a straight line or do it the same way as other people, but achieving and fulfilling dreams is definitely possible.
You are definately right. Someone always has it worse. I do keep that in mind when I find myself loathing in self pitty ( a bad day). I guess although I have been living with RA for years, possibly since childhood, I still feel I need more information about my illness. I have always been a questioning student. I want to learn all I can to help me understand what is in store for me. My last most recent flare was unbearable, 9 months of hell. My knees were so swollen I could hardly walk 20ft. without shutting down. I spent most of the time in bed with my legs elevated. After injections and about a month of PT, started to feel a little better. In fact a lot better. I am moving aroud just fine. I have RA in all of my joints but for some reason it hung on in my knees forever. It definately was a very dark time for me. THIS is what I fear the most. Starting something and not knowing when or if terror may strike again where I can't walk. I will definately review all of the posts you sent me and keep my illness tucked away. I have a BFA from youngstown state. I am a professional artist and use every joint in my body to create. Just don't want to start something and have to take a nap for another 9 monts. Little fearful but I think somehow I must try.
I think you may have misunderstood me - although it's not a bad idea to keep perspective, I actually think a nice go around with some self-pity can be helpful. You have the feelings of sadness, anger, etc., you have reason to have those feelings because it within the context of your life, there are real issues related to the RA and taking some time to experience these feelings can help you work through them so you can move on. However, I usually tell myself that whereas I shouldn't wallow in self-pity, it's okay to take a good swish in the self-pity pool in it every now and again! Write angst-filled poetry, have a good cry with some chocolate and then dust yourself off and get back to living your life.
Living with the unpredictability of this disease can be very difficult - I call it living under the shoe (as in, waiting for the other shoe to drop). You have to live with a sort of willful blindness, and assume that you'll be okay, live as if you'll be okay and in every now and again, when the RA flares up, you deal with that and when you get out on the other side, you go back to what you were doing. It means you do it in sort of fits and starts, but the important thing is that you do it, right?
I would love to hear more about your art and I bet other users would find it interesting and possibly inspiring, as well. I'd encourage you to write a SharePosts about your experience with RA in how you continue to create and be an artist.
I did create a shared post back at the beginning of the year. I was so optomistic that I would tackle this illness no matter what came my way. Little did I know it would tackle me first. As the illness lyes dorment under my shoe, I fear when it will drop. I really have to stop living in fear of the next flare. I really appreciate your approach on things. I am first, and RA can wait. I should just go for whatever I dream is possible. We do only live one life and there are so many things I haven't accomplished. This thinking does feel so much better than worry and concern. I am not being blind though, only living for today. Maybe I'll redecorate my home, re-painting all of my walls, new window treatments, artwork and all. NA, my hubby would kill me, for I just did all of this 3 years ago, while in remission. But the thought of doing what I would like to without the RA burden in the back of my mind feels less restraining. I know I make the decisions while I can and RA is just along for the ride.
Absolutely! You're in control, no matter how good or how bad it gets. I'm going to refer you to one more of my posts I wrote after reading a brilliant quote by Michael J. Fox: "I don't have a choice of whether or not I have Parkinson's: I have it. But other than that, I have a thousand choices, and I can't let myself be sunk by the weight of that one non-choice...". When things are hard, I read that quote and remember I have many, many choices.
I just checked your post and I do remember reading it. I'd still love to hear about your art, though.
Lene, sorry it's taken me so long to get back with you. We had a death in the family. My Grandfather. All is well though. I will be gathering my thoughts for a shared post. Thank You for all of your words of wisdom. It has surely helped. Pamela
I'm very sorry to hear about the death of your grandfather. Losing someone close to you is never easy and I hope you and your family can remember him with love and telling great stories about him.
No rush on the SharePosts - do it when it feels right to you.
Thanks You for your sympathy. He was a great man. Pamela
Lene, I just love your writing (as I've said before) but this "old" post brought it front and center again for me. You're the best and validated my feelings some time ago; thank you from the bottom of my heart.
Thanks for saying that! It means a lot to me if I can be of help.
That is hard for me to do! No drinks. I am on 15 mg metho a week. The other night I had a lemon drop martini with vodka and the next night had a half of a glass of the martini. Once in awhile I will share a beer with my husband. I am finding it very difficult to lay off all the alcoholic drinks forever. We are in a wine club and I also drink a few glasses of wine every other month. I know it is prob doing something to my liver...but the reading of the ALT in my blood is still within the range...although the reading has been going down and I wonder if that is the good thing or bad thing? Carole
The best advice I can give you is to speak to your rheumatologist about another medication. There's a reason they say absolutely, positively no alcohol with methotrexate and if your lifestyle makes that impossible, switch medications to stay safe and healthy.
Please understand that I'm not making any judgments about your lifestyle and neither should your doctor. It's important to have a life when you have a chronic illness - it can't all be about RA, because that's a surefire recipe for depression. You have a well-established life that gives you pleasure, which will help you get through the rough spots with RA and that includes your wine club and the good news is that there are a bunch of treatment options for you that will allow you to drink in moderation. Also, one of the benefits of a glass of wine is that it's a wonderful painkiller/muscle relaxant, as well as having been proven to be good for your heart.
In terms of your decrease in levels, to be honest, your doctor is a better person to ask about implications of that test result.
Good luck! Please let us know how things go? Down the line, if you're up to it, would you consider writing a SharePost about this experience? There's so much focus in our lives on medication and treatments that we often forget that the rest of life have to be lived, as well and I think it would be interesting for our users to read about your choice.
In answer to stopping MTX: My Dr. took me off of it because of elevated liver function studies. I was having blood work done every 6wks which showed untoward effects on my liver. I was then placed on Arava (lefluenomide) instead. Along with the prednisone 2.5mgs. bid, I am feeling great. There was little or no nausea in the beginning and I didn't notice any loss of hair. I take Arava once a day and folic acid 800mgs once per day. (I get it in the vitamin section at Walmart). It has kept me in remission...my C-Reactive Protein and kidney function test have been within normal limits. I'm slightly achy when the weather changes in my hands and wrist (I live in NE OHIO), but other than that I feel fine.
The only advice that I got from my Dr. was to avoid the ibupropens and naproxens with Arava, because it will affect kidney function.
I drink wine on my methotrexate and i'm fine, I let the doctor know, they keep an eye on my liver monthly. Cheers!