Find another rheumatologist! A good doctor will listen sympathetically, not be dismissive of your symptoms, will explain treatment options and ideally will work in partnership with you to find the treatment that works best for you.
Treating RA and lupus is a process...it can take a while to find the right medication or combination of medications. You might want to see a rheumatologist who focuses on lupus, since that's a pretty complication condition.
With a full-time job and two kids, your plate is full, I understand....which is all the more reason to keep looking for a doctor who you feel you can talk to and work with. Getting a reasonable amount of sleep, rest and gentle exercise can help with the energy situation....but the right medicine can also be life-changing.
Being angry is very common, and very understandable. Getting support and having a safe place to vent your feelings can really help. There are support groups around---often through hospitals or the Arthritis Foundation---that can help. Other people who have RA will understand what you're going through, and may be able to give you some practical tips and ideas to help you, too.
If the anger---or depression---is just really hanging on and interfering with your ability to cope, then seeing a counselor/therapist person can help.
Are you happy with your rheumatologist? If you're not happy with that relationship, maybe it's worth investigating other doctors in your area to work with. A good doctor should listen to your complaints, and really be committed to working with you to find the best treatment.
It does sound like you've tried everything....do you exercise? There are water fitness classes that are designed by the Arthritis Foundation. YMCAs and many other pools offer them. I find then really helpful, both to ease joint pain and increase mobility, and also from a mental health standpoint.
Hang in there and keep working on it...I know it's tough, but they keep developing new treatments, and hopefully you'll hit on the right combination at some point.
Is there light at the end of the tunnel? Having dealt with this for 3 or so years, I would say yes---but it is a journey. Finding the right medication or combination of medications that work for you can take some time. There is a trial and error element to treating RA, it seems to me.
But working with a doctor who you can trust, and who you have confidence in, is really important. Finding out all you can about RA is also helpful. The Arthritis Foundation is one good resource.
I also have a generally low white blood cell count, and that has made finding the right meds a little tricky, since the biologics can lower your white cell count even more than it already is. BUT I've been able to find one that works for me, and the results have been very, very good---no pain and no morning stiffness, so I would say just stay the course, work with your doctors and keep a hopeful outlook. There are lots of different treatments available, so hopefully you'll find the right one eventually.
Re: staying healthy and avoiding infections, I use a hand sanitizer all the time, I take vitamin C and other supplements and mushroom extracts, and I really try to avoid people who are sick. It's a little harder with small kids, but hopefully you're immune to a lot of what's out there since your oldest is 8.
Taking a Arthritis Foundation water fitness class--or any water fitness class, really---is extremely helpful to get your joints moving in a painless way.
It really does sound like your RA is not very well controlled. I wonder why your doctor hasn't tried you on any biologics, if you do have RA. Have you considered switching to another rheumatologist? If I were you, I would look for a new doctor. Good luck and best wishes...View Thread
I have been on biologics for about a year, and it is working really well for me.
As far as cost, most of the major brands have patient assistance programs. I have health insurance through my employer, and was able to sign up for a payment assistance program, and my monthly co-pay is just $5.
I know that both Enbrel and Humira have these programs; I'm sure most of the other ones do, too. You can look at their websites for more information.
I am currently taking MTX and Humira, and the results have been really good for me. I wake up without stiffness, have no pain, and even this terrible weather we've been having in the Midwest has not been bothering me. I recently had an ultrasound on my wrists, and there has been no progression of the disease since a year ago. This is really important because RA if untreated can really affect your mobility.
I was hesitant to start the biologics as well, but now I am convinced that it was the right move. Just make sure you are carefully monitored, with regular blood tests, etc. to watch out for side effects.
The other thing I am doing is going to water fitness classes (Arthritis Foundation and regular classes) four times a week. It is tremendously helpful.
Good luck and best wishes. Don't give up....it's a process, and sometimes finding the right medicine or combination of medicines can take a while.View Thread
Hi, nmacky. So sorry you are worn out and depressed...
Maybe you should consider finding a doctor who is a little more empathic. A doctor who tells you to "deal with it" doesn't sound very helpful. Are you seeing a rheumatologist?
I know you said you don't like medications, which is very understandable, but perhaps this is a discussion you could revisit with a doctor who is sensitive to your needs and concerns.
Maybe my story will help: I am also very averse to taking medications (I think most people are) but I've worked with a (very patient) doctor who convinced me to do a trial of methotrexate, and it helped to some extent. She kept encouraging me to try Enbrel, and after a year, I gave it a try. I was really resistant to taking it, but I had some changes in my personal life which required me to do more driving and other activities which were really exhausting me, so I tried it.
It was really helpful. In less than a month, I could do much more, with less fatigue. I could get dressed more quickly, carry groceries more easily. I started sleeping better, and actually woke up without morning stiffness. (Really, I don't work for a drug company!) I can also go out in the evening after work, instead of coming home and plopping on the couch. I even shoveled snow once, although in retrospect that was probably not a good idea! I was just so excited that I could do it.
RA is a progressive disease, so the great thing about these biologic drugs like Enbrel, Humira and the others is that the can actually slow down or stop the progress of the disease.
For me, the benefits outweigh the risks. I don't want to end up unable to use my hands and have problems walking and carrying things as I age.
It is depressing to not be able to do things, to have chronic pain, problems sleeping, etc. So I understand how you're feeling. My sincere suggestion, based on my experiences, is to find a doctor who you like and trust, and be open-minded about the medications.
A competent doctor who puts you on RA medication will monitor you regularly for side effects and will work with you to find the right drug or combination of drugs that work best and safely for you.
Good luck and best wishes...don't give up the fight.View Thread
More ideas, in addition to my previous post: Use an electric mixer to mash potatoes (don't peel them). Get a good, well-balanced chef's knife. If you can't carry a pot of boiling pasta to the sink to drain, use a slotted spoon to remove the pasta into a bowl. Use nonstick pans for easier cleanup. Get help with the hard stuff!View Thread
This is a great discussion! Pans with two handles are really smart. When I started having problems with my hands, I switched to Corelle for dishes and bowls. They are extremely lightweight and easy to handle.
OXO makes a lot of products that are easier on your hands. I really like their big V-shaped jar opener. Their vegetable peeler is also good. I also bought the electric "As Seen on TV" can opener that you place on top of the can and it goes around the can by itself. That one is a winner.
I recently needed new mugs, and spent a lot of time comparing, lifting, etc., before I made a decision. Sometimes the differences are subtle, but they can make a big difference.
Xperky, Corning Ware is really heavy, especially when filled with food. Maybe you can switch to metal pans or use aluminum disposable-type baking pans.
It's also helpful to get large-size tweezers, etc. There are also nail clippers designed for people with hand problems.
I hope if anyone else has any great tips, they will pass them along.View Thread
Two comments: 1) Don't be terrified by what you read. Every case is individual, and often it's people with more challenging cases who participate in forums. You may indeed have a great response to the methotrexate, and early intervention has been shown to slow down or stop the progression of the disease. I have had satisfactory results with the MTX myself and haven't had to add any other treatments, etc. Be patient; there is a fair amount of trial and error in finding the right medication, but you can get help.
2) I find an anti-inflammatory diet helpful. There are several versions out there, but the main features are plenty of fruits and veggies, whole grains, lean protein and healthy (unsaturated) oils. Foods to avoid include refined sugars, highly processed foods and foods high in sodium. I also take fish oil daily. Dr. Andrew Weill has an anti-inflammatory food guide, and there are many books and other resources.
Good luck to you. It sounds like you are taking the right steps...working with a rheumatologist, doing research and looking for answers. Just take it one day at a time, and make time for activities you enjoy to keep your stress levels manageable! View Thread