Hi there!
I just found your site as I was looking for any information to help me cope with my diagnosis of RA. I think this site is very helpful for new patients to know there are others out there that are experiencing some of the same things I am. I currently am only taking prednisone and plaquenil, I have only been on it for two weeks but my RA doctor swore I would feel 100% better by the next afternoon. Well two weeks later no better and getting more discouraged by the day. I am looking forward to getting some more feedback as to what you all have been through and any suggestions you may have to help me. I would really like to know when and if the fatigue ever ends.eh, I don't want to talk about it because for me, its the worst
part. I will say tho that it has improved some since starting
DMARD therapy. It certainly isn't where I would like for it to be.
But one thing I will say. PLAN your day so you can take a rest,
even if its only 15 minutes but longer is better. Even if you
don't sleep. Just get comfortable and be absolutely quiet.
It does help.
HI, Jay
I think the one thing that stands out the most for me with RA, is that every single one of us is unique in what course our disease takes. It really does help to read these boards though - you'll be amazed however at how many other people ARE experiencing what you're experiencing. The different drugs seem to affect people differently.
I am on Plaquenil and a low Prednisone dose following major pain and disability when I was diagnosed out of nowhere in 2002. How much prednisone are you on? Do you have a pain medication to take also while it all gets figured out? I also take methotrexate by injection once a week and that has just been doubled because of some new swelling and a new node that has appeared. My first node -at least I think that's what it is. Waiting to hear back from the doctor on that one. The combination of these drugs seem to have brought the disease under control for me and for that I am grateful. Be proactive in your own treatment plan - always know why your doctor is doing each thing. I hope you quickly find the combination of treatments that work for you.
I am on alot of pain meds. I take 100mg ms contin 3 x's a day plus 4 percocet and still have alot of pain. I hate to think what it would be like if I wasn't taking them. I am on a 5mg prednisone with 200mg plaquenil. I don't go back to the RA doctor for another 3 weeks but so far I can't say I see a remarkable difference. My husband seems to think once the meds take affect that I will be back to my old self. I'd like to think that also but now I'm not so sure anymore that that's possible. I love this website so far because I have no one here that understands what this is like. They all think I'm just a big baby. I try to plan my day for a rest period buy I have a 10 year old and that doesn't allow for rest periods. I also work 9 hour days so I can't get much rest there so the weekends seem to be my time to spend sleeping most of the day. Look forward to getting to know all of you and hopefully getting to understand this disease better.Jayaz,
You'll find lots of ideas on these boards on how to 'bring your family along' with what's happening to you. I have found that people generally hear only the 'arthritis' part of 'rheumatoid arthritis' and they don't really understand what the difference is. The difference is huge and some people refer to their 'autoimmune disease' rather than using the term RA. There's a good article on this Website actually that outlines all the ways RA can show itself - not just in our joints. Maybe you could print that out and leave it lying around!
If you come across any other magazine or newspaper articles about it, maybe you can get your husband/others to read them and they can learn more of what you're going through. My husband didn't really get it at first either - it's a big adjustment for them too and it takes time. Somehow you come to understand what the 'for better or for worse' part of the marriage vows really mean! You are not being a big baby - don't buy into that for a second.
Jay---You are on a lot of pain meds but it sounds like you need to increase the Prednisone and start on an NSAID. Then you could probably decrease some of the narcotics. I dont think that it was reasonable for the doc to tell you that you would see improvment right away. It does take time and you are not really being treated adequatly for inflammation. It is a wonder that you arent knocked out all of the time with all of those drugs. I am all for treating pain, but if the cause of the pain can be treated then that is where the focus needs to be. I dont think people have a good quality to their lives when they are in a fog from meds. I know it is necc. sometimes, but alot of times it just masks the real problem. I hope you will be able to address this issue with your doctor soon and get some relief. Good luck and keep us posted on your results. Also welcome to the board, you will find lots of good info here!I hope you find a balance soon too. I know that painkillers of that magnitude can cause fatigue also. I take testimony from doctors, and the pain management specialist talk a lot about fatigue being a major side effect of the pain meds. I agree that those doses sound pretty high. I am no doctor, but I hope you can find some other medications that help wean you down on the pain meds and get your inflammation down so you need them less.
Thanks everyone for your support. I suppose I should have mentioned that the first reason I am on all the pain meds is I also have a lower back issue and that is what started me on the pain meds. I am hoping that I can get weaned off of them soon but am afraid of the results if I don't have at least some pain meds. My husband just told me that he just wants me to be fixed. I told him from what I've read it's not an issue of fixing but of coping and I can't expect fixing unless it's remission. I don't think that's what he wanted to hear but I can't lie to make him feel better. Well, I'm glad I found this site and can't wait to hear more from everyone.
Hi, welcome.
I'm pretty new too and am going through the same thing with the fatigue and adjusting to all the meds. I started with back problems and an OA diagnosis and 8 years later got diagnosed with RA in addition. I too started on low dose prednisone and am still on it a year and a half later. Next came plaquanil and that took some adjustment. At first it made me very dizzy and I was walking into walls at achool where I teach. I'm sure some of the students thought I was high.I have since adjusted to that. Methetrexate has been hard for me but is helping to arrest the inflamation. Enbrel was the latest addition. I am still fatigued, but not as fatigued as I was before.
I find exercising every day to be extremely important. It helps me sleep better and helps my mood. By the end of a work day it's the last thing I want to do but I find it really does make me feel better so I do it. Even If it's just getting in a warm water pool and moving around or floating, it helps.When I started out at the gym I could hardly move and felt really out of place. I did a few exercises the physical therapist taught me. I could only do 2 minutes on an exercise bike with no resistence. Now I do 20 minutes on the bike, 15 on the treadmill, and about 20 minutes of stretching exercises. Next I go into the warm water pool. I've found a whole bunch of people like me there either with arthritis, or recovering from various orthopedic problems. We are our own support group. That way I complain less to my husband.
A hot bath right before bed helps my joints relax enough to get some sleep. If you sleep, you'll feel a lot better the next day. By the way I can't take any pain medication at all due to allergies so I've had to come up with alternative ways to manage the pain. The RA hasn't stopped me from doing most of the things I enjoy doing. I just have to do them in short spurts and rest up before hand. My husband and I will be traveling to Rome this summer Enbrel and all.
Just hang in there, I still think you need more anti-inflammatory meds though.....I never hurts to ask the doctor. Good luck!Thanks to you all. I feel so much better just having people who understand. I just will have to be patient and let the meds do their job. I did tell the RD I wasn't getting much relief and he told me to increase the prednisone to 3 tablets of 5mg and that I couldn't take more than that a day. I never did much exercising because I walk almost 2 miles a day at work. That to me is enough exercise. I will start if the RD suggests it but until then I guess I will try to do things in small doses rather than all at once like I'm used to. My poor son doesn't understand why mommy can't go to the park or mall with him like we use to. I hope one day to have enough energy to again.