Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I am 46 and recently diagnosed with RA. I went to the Dr for what I thought was a reaction to bug bites. Turned out it had nothing to do with the bug bites, it wasn't Lyme, it was and is RA. It is funny in a way, because I now can recall all of the single joint pains that I have ignored, blaming them on yard work or maybe I did something wrong in lifting something or moving or sleeping. It wasn't until it was my index finger, my pinky, my opposite elbow, my knee and one of my big toes all at the same time that I starting thinking I should go to the Dr. This, of course, was the last thing I expected.
My entire life I have had a good immune system, never get sick with small stuff or flu. I had chronic pain with my back for 20 plus years and finally had surgery for spondolythesis about 3 years ago, so when pain comes and goes it was easy to blow it off as "I'm just getting older".
Now I wonder if the pain in my feet that make it hard to walk on my heels in the morning is connected, the fact that I wake up and have to rotate my wrists, and probably more things I just can't think of right now.
About a year and a half ago I started suddenly having severe dry eye and inflammation, which took me up to about 2 months ago to get Restasis for. It seems now, that it was connected to the RA. I guess it was probably the second sign that something was going on, but who would ever think dry eye equaled RA? My feet have hurt off and on for years, even more so when I exercised, but I never looked into it.
I think I caught it early by the fluke of getting bug bites and thinking I had Lyme or an allergic reaction. That night that led me to the Dr., so far, has been the worst of this experience. I had chills and was freezing, no real fever though, just slightly over normal. I hurt in all the joints mentioned, it felt like someone hit me in all of them with a hammer. They ached horribly, they were all swollen (rings had to come off one hand), and I couldn't put my flip flops on because it was too painful.
It was about 10 days after the blood work was done by the regular Dr, that they called. My RF factor, a 44 and my anti-CPP (I think that is what it is called) was 250. I went to the Rheumy just over a week ago and am on the methotrexate 10 mg a week and folic acid x 1 a day.
I have done a lot of reading and am worried about what it to come. I watched my ex Father in law go very quickly as the RA attacked his hands and lungs over a 3 year period. I know many people live active lives with RA and I hope that will be my story.
I kind of need to not be disabled, as I have a 24 year old adult son who is physically disabled and I have to be able to lift him, carry him, change him, dress him, etc... How is that going to work if I need help doing my own daily needs?
New and worried,
Kat
My entire life I have had a good immune system, never get sick with small stuff or flu. I had chronic pain with my back for 20 plus years and finally had surgery for spondolythesis about 3 years ago, so when pain comes and goes it was easy to blow it off as "I'm just getting older".
Now I wonder if the pain in my feet that make it hard to walk on my heels in the morning is connected, the fact that I wake up and have to rotate my wrists, and probably more things I just can't think of right now.
About a year and a half ago I started suddenly having severe dry eye and inflammation, which took me up to about 2 months ago to get Restasis for. It seems now, that it was connected to the RA. I guess it was probably the second sign that something was going on, but who would ever think dry eye equaled RA? My feet have hurt off and on for years, even more so when I exercised, but I never looked into it.
I think I caught it early by the fluke of getting bug bites and thinking I had Lyme or an allergic reaction. That night that led me to the Dr., so far, has been the worst of this experience. I had chills and was freezing, no real fever though, just slightly over normal. I hurt in all the joints mentioned, it felt like someone hit me in all of them with a hammer. They ached horribly, they were all swollen (rings had to come off one hand), and I couldn't put my flip flops on because it was too painful.
It was about 10 days after the blood work was done by the regular Dr, that they called. My RF factor, a 44 and my anti-CPP (I think that is what it is called) was 250. I went to the Rheumy just over a week ago and am on the methotrexate 10 mg a week and folic acid x 1 a day.
I have done a lot of reading and am worried about what it to come. I watched my ex Father in law go very quickly as the RA attacked his hands and lungs over a 3 year period. I know many people live active lives with RA and I hope that will be my story.
I kind of need to not be disabled, as I have a 24 year old adult son who is physically disabled and I have to be able to lift him, carry him, change him, dress him, etc... How is that going to work if I need help doing my own daily needs?
New and worried,
Kat
Sorry to hear all of what's going on. You may not notice anything right away with methotrexate, but keep at it. I am on 20mg and it has helped. I also recently started additional treatment with Humira (just took my first injection). Keep with it. Fortunately, I am able to function fairly normal, but I know when I overdo it. It seems as if you have been able to weather a lot of storms, you should be good with this one. One thing, REST, as you need it.
As for your son, keep the faith! with prayer and a good doctor, you will be able to function and make it through.
I'm glad you finally got a diagnosis, that is half the battle. The second half of the battle is getting on good, strong meds. Especially if you need to be physically fit to take care of your son.
10mg of mthx- is that oral? Because you might find the injectable works better and doesn't hurt your stomach as much. And if mthx doesn't work completely, don't sit back like I did for 5 years, sucking up the pain (you sound like that kind of person) and not complaining. Mthx can work very well on its own, or in combo with a biologic.
Don't be afraid to ask your doctor to see a PT and an OT.They can be very helpful. I saw an OT when I was first diagnosed, and I got some nifty things, plus wrist guards that really helped me for many years (I've been through a lot of pairs)
And please post more here - let us know about your journey and don't be afraid to ask questions. We are not doctors, but most have lots of experience to share.
I am not so sure that dry eye is DIRECTLY related to RA. It is more of an indication of Sjogrens Syndrome, which you may have along with RA, or your RA symptoms could be from Sjogrens.
Sjogrens is difficult to diagnose and often has a false negative on blood test. There are Sjogrens centers, in CA, PA, MD (Johns Hopkins) and hers's a link to other Sjogrens resources: http://www.medicinenet.com/sjogrens_syndrome/city.htm
I can't believe how so many stories start to mirror my own. Dx'd about the same age, same weird joint pains in more than 1 spot, fever chills etc.. Although I didn't have the dry eye problems I do have the back issues & going through back issues as we speak.
Good luck & check back often. There's a bunch of good people on this forum!!
I am on my 2nd biologic (Enbrel) along with MTX injections.
Be sure to keep a journal of some type and keep your Rheumy updated on what works for you and what doesn't. example: Humira did not work for me but had to wait and give it 5-6 months before changing to Enbrel.
I am lucky in that I can email my Rheumy and send pictures of the swelling, etc. This lets her know how the treatment is working for me. I can't reiterate enough how important it is to keep your Rheumy updated. Keep records of your progress.
I wish you the best at taking care of your son. Hopefully you can continue to do so for years to come.
Gentle Hugs
I took my first dose of Methotrexate last Sunday, expecting upset stomach, but nothing happened. I guess I got lucky, as I have read many people have this side effect.
I am guessing that the Dr. didn't put me on any additional meds because the pain is not that often as of yet. Of course, I am a bad judge, as Marlene mentioned, of my pain levels after living with horrible pain for so long. All of my discomfort at this time is just an annoyance more than painful. There are times when it hurts and keeps me awake or interferes, but that has been here and there, not daily, yet.
My feet constantly ache and feel like I did too much, even when I didn't do anything other than walk to the kitchen. It's like having a headache that won't go away, but in my feet. They feel bruised.
The RA showed up in my ankles first, then the wrists, and now, it's everywhere. I've been on MTX for years, and tried, Humira, Simponi, and Zeljanz. Now, after knee surgery, I'll start Orencia. Sad you got RA, but good you got diagnosed, so you can get on the meds to stop the progression.
With MTX I found that every year the dose had to be increased. Over the years, once I had been at max dose [25mg] for several years, my disease started getting worse. It was time to add to the arsenal.
http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Reactive-Arthritis
Reactive arthritis can affect the heels, toes, fingers, low back, and joints, especially of the knees or ankles.
You mentioned a disabled child. My much younger brother has cerebral palsy and until my mom died she took care of him entirely feeding him, washing, cleaning....everything. My mother insisted on doing everything herself. Wouldn't let anyone help her.
Finally we talked her into getting some relief and allowing him to go to a special day care. The van picked him up and brought him into the house. It was good for both of them.
Currently he lives in a group home with other men around his age who also have varying degrees of mental and physical disabilities. He appears to enjoy life and they have round the clock staff to supervise and direct activities.
If you haven't yet, please look into what might be available to you in your state. The reality is that you may not be physically able at some point in time to care for him and you need to set things in motion.
Lynn
I take Hydroxychloroquine for the RA and Cevimeline for dry mouth.
It will take a couple of months to know if the RA med will help my symptoms. I am on a very low dose.
I am also worried about what will happen in the future. I have always tried to take care of myself. I've never smoked, very rarely drink alcohol and stay active. It makes you wonder where this comes from. I have read that it has to do with genes and environmental issues.
I've read that diet can help symptoms. So, I'm going to learn about that and see if it helps.
I wish you the best. Hopefully, we will get support and peace of mind from this forum. Take care.
I am very lucky that I have a lot of help with my son. He does go to the adult daycare during the day and I have 4 wonderful care givers that come in to help me when I need it. I may end up using them more as the future brings whatever it may. I will keep him at home with me and my husband for as long as humanly possible, but it is nice to know that these programs are there if I need them.