I have been reading the board for a bit and I always make sure to read your posts because they're so sensible and encouraging. I'm really so sorry to read you're hitting a block and feeling discouraged.
Would you mind sharing your story? How long have you had RA? What have you tried and why didn't they work for you?
Thanks, and I hope you're feeling better.
What is the reason that you would want to share my story? You can private message me if you want. Then, maybe I could answer you better.
I only wanted to hear your story because, frankly, I'm scared. I have severe RA and nothing has worked for me yet and I was just wondering if we're similar. I wanted to get to know you better. I had assumed people who had been here longer knew all about you and all you'd been through.
Scout, sorry for the leariness and sounding rude. We get so many spammers. We had someone on here recently that was looking for people to testify to the results with Orencia. They had logged on with "Scout" in their name. So, I just wanted to make sure. I apologize. I hope you find a home here with us.
I would be more than happy to get to know you better. I have had severe RA for 6 years and mine started out atypical. First, I had problems with my eyes, couldn't see and had weird, ice-cold headaches. They thought I had something that only people in their seventies get, temperal arteritimis. It wasn't that, or at least we still don't think so. I was 43 at the time. The next problem was heart palpatations and chest pain. I got pericarditis which is inflammation of the heart and quite serious. I met my Rheumy while in the hospital. He was the first doctor to say that he thought he knew what was wrong with me.
He started me at 25 mg of MTX and 20 mg of Prednisone. I had been at 60 mg of Predisone which definitely cause my heart to race and gave me wicked headaches. He said it was a life or death decision in my case. There really was no choice. At that time, I got the dianosis of Vasculitis and potential for Lupus. Over time, the diagnosis of Rheumatoid Arthritis, Sjogren's and Fibromyalgia were added and the heart and lung problems continued. We are guessing that I've had Pericarditis 2-3 times now. The Cardiologist and the Rheumatologist disagree. I also see a Pulmonologist as the RA affects my lungs probably because I have a long history of asthma and Bronchitis.
I also have Osteoarthrtis in both knees needing surgery on both of them and have it two places in my back which are causing major problems. I have developed a bone cyst in my shoulder joint, a bone spur along the clavicle and chronic tendonitis in my left arm. My left knee is most OA, with a torn menicus. The right knee has RA, OA, Bursitis, tendonitis and torn patellar ligament. Supposed, at one time these where bone on bone. They used Synvisc and PT and that greatly improved the pain and function until this year.
I wear knee braces, wrist braces and walk with a cane. I also have sleep apnea and I'm supposed to be using my CPAP machine but haven't unpacked it since my last move. I hate that thing. But I should get it going. My sleep apnea is mild. They treated me for that to help with the FM.
Now, the Neurologist thinks I have nerve damage which is causing me to have tremors and inability to walk. The Pain Specialist thinks that I have a hernitated disc instead of just OA in my neck. My former Rheumy said I was maxed out on my RA meds. I have also been on Plaquenil about 4 years. They tried Remicade which worked great for me but I changed insurance and they had to switch me to Enbrel which didn't work at all. I could have been injecting water for all the good it did me.
The new Rheumy doesn't want me on any more biologics. One, he said that they are killing people (including his patients). I suppose I am at an even bigger risk because I have a history of infections and the vascultis makes open sores on my body that could easily get infected. A severe infection could kill me. It doesn't help that I am allergic to a couple of antibiotics. So, I don't know what else my Rheumy is going to try next. I see him next week.
I have joint involvement of the ankles, knees, right hip, hands, wrists, elbows, both shoulders and possibly the spine. I have organ involvement of the eyes, nose, mouth, lungs, heart and then the supposed nerve involvement.
I am on the following medications: MTX -25 mg, 12 mg prednisone, 400 mg Plaquenil, Xtalan (for glaucoma, side effect of prednison), Vicodin 3x daily 7/500mg, Mobic 15 mg, Diovan (high blood pressure, side effect of predisone) Flasix, (a diuretic, side effect) Potassium to counteract the diuretic, Flax Seed Oil, Multivitamin, Folic Acid, Calcium/Magnesium/Zinc, Vitamin E, Bacoflen (muscle relaxant usually given for MS), Toprol XL (slows down the heart), Notripline (for Restless Legs Syndrome) and Clonazepam (also for RLS).
I don't know if I've covered everything. I do believe that I've had RA longer than 6 years. Several summers before I was diagnosed, I would get really sick from the heat and break out in blisters which are apparently the Vasculitis. Before that I had Irritable Bowel so bad that I had to quit working for several months (another inflammatory process). I also had lots of female problems, Endometriosis and Pelvic Inflammatory Disease (which means the whole pelvis is inflammed) and tubal infections before that. Asthma is also an inflammatory process.
I also get a rash on my face from the sun but since I don't even want to know for sure whether I have Lupus, I don't pursue that one. Besides, I'm pretty much on the meds for that.
Originally, the doctor called my condition Mixed Connective Tissue Disease which where you have an overlap of symptoms from several autoimmune diseases.
I'm also 5'. But that has no bearing on anything.
Now, you must at least tell part of your story and what is worrying you.
Deanna, If I can but in here. I feel so bad about all the complaining I've done when I see all the serious problems you have. You are such a support to others in spite of your pain. You are one special lady.Prayers are coming your way.Please don't feel bad about me. I'm still kicking around and if I felt better, I know I would be causing lots of trouble. In fact, "trouble" used to be my nickname.
But I appreciate the kind thoughts.
Deanna, thanks for taking the time to write all of that out. I'm really sorry you're having so many problems. It just doesn't seem fair.
I was diagnosed in January and haven't been out of a flare since then, I guess. My rheumatologist said my numbers are "off the charts" on all of the blood tests, and I had erosions and narrowing in many joints on the first set of x-rays.
I've been on mtx, which had to be reduced because of elevated liver enzymes, and Enbrel, which didn't work. I've had 2 Remicade infusions and they haven't done anything yet. I haven't worked a full week in a long time, and I'm depressed. She says my disease is aggressive, severe and so far unresponsive, but then she turns around and almost chastises me for not being more hopeful.
What scares me is that I live alone and sometimes it's all I can do to take care of myself and go to work. I honestly don't know sometimes how I feel physically. I mean, do I hurt because I expect to hurt or because I hurt? Am I fatigued because of RA or just because I'm old and fat? Am I making some of this up because I enjoy the attention I'm getting? Sometimes when I've stayed home, I think I could have really gone to work if I'd wanted to more.
Today we had 7" of snow and schools were cancelled where I live, but only delayed 2 hours in the town where I work. I ended up calling in sick because I just wasn't up to trying to dig out and then drive 30 miles on icy roads and then work. I didn't try though. I just gave up before I even tried it. I stood around and cried and looked out my window wondering how I'm going to get through this winter by myself.
So, that's my story and those are some of my fears right now. I have an appointment with the rheumatologist on Monday when I get my 3rd infusion and I am going to tell her all of this stuff.
Scout, I'm sorry to hear that you are having such a hard time with this. But what you are feeling and what you are experiencing is pretty normal in the beginning. First, it can be really hard to find a good doctor. But it sounds like the treatment your Rheumy is giving you (but not necessarily her bedside manner) is good. Second, they have to find the right mix of medications. This seems to be very hard for some people. And, it takes months for them to work.
They have had to pull me off the MTX at least twice for a couple of weeks both times and then they were able to put me back on. While it might be a possibility for you, it depends on how bad the results were and not a good sign that your enzymes shot up so quickly within such a short period of time. Other people are on Arava. In the past, they have use gold. I don't know of any one using that now, but it is still listed.
The Remicade for most people requires more than 3 months to so an improvement. If that works for you, you will be amazed at how much better you can function.
It seems one of your big problems right now is depression. Don't feel bad about that either. Most people with chronic illness like RA have depression. I haven't seen any threads on it lately, but I know a lot of people here are taking something for depression. I definitely would ask for this. I also think you should come here often, post your questions. Also, call the Arthritis Foundation in your area for a support group. If you talk to your Rheumy about the level of your depression, then she will probably prescribe something that will work well with your other meds.
It is scary living alone with this disease. I spent all of last year alone. My daughter recently moved back in with me on a temporary basis and it does help immensely. But it only helps if the other person is truly supportive. You will read volumes here about unsupportive families who just don't get it.
The fatigue and not wanting to do something is a combination of both the RA and the depression. Actually, not even attempting to shovel snow sounds like a very smart thing. Your joints and muscles are more frail than they used to be because of RA.
However, you might want to start to think about both your living situation and your job. Is there any improvement that you can make in either of these? For instance, you mentioned that you are older, would moving to a place that had others close to your age help? I moved into a Senior Mobile Home which I am technically too young for. But it is a nice community here that seems to watch after each other. I feel safer, I'm not in an apartment any more. Another option might to be to consider a roommate, but those can have their downfalls. But think about your options. Some people decide to move closer to family. But this is only a good option if you really can depend on family to help you out if you need them.
Work is a different situation. Disability is a hard path. However, you might want to discuss this possibility with your doctor. But I wouldn't want to go there until you get some of the depression under control. If you are over 50, you're chances of getting it are better. What counts against you right now is that they haven't been treating you very long. But sometimes, a combination of health problems will get you there. Unfortunately, you pretty much have to live without income during the process. If your depression is severe enough, it might be enough to get you disability.
But the question is do you want to work? Sometimes we are in jobs that are no longer appropriate for us after this illness hits. Several people have had to consider changing professions or quitting. You know that if you keep having a lot of abscences that will probably impact your employment. What you do not want to lose is your insurance.
What you really need is someone to talk to. I suggest that you also try and get a referral to a good counselor because you have a lot of really serious questions to consider here.
Living alone with this is incredibly hard. My kids are really afraid something will happen to me when I am alone. But I'm used to it. I will go to the ER if that is what my instincts tell me.
I have also started investigating getting help with my household matters, etc. I want to stay independent and I'm hoping my daughter will want to move on with her own life. I don't want her to take care of me the rest of my life although she seems to want to do it. She has health problems too, so I do a lot of taking care of her.
In all my troubles, though, I have always felt that there is this tug to the direction that I should be going in. I do feel like God is in control of it. I bought this place right about the time my shoulder went out, moved during PT for it, then had to quit my job and then my daughter needed a place to live which means she can pay my rent. Every single thing has fallen in place even though I haven't had the faith to see it at the time and I often seem to be falling apart.
You just keep coming back here. There are some great people here that I am very proud and lucky to know. I don't know how I would have made it through this last transition without them.
Do not give up. There is nothing wrong in calling the crisis numbers in your area and talking to someone. A good cry can work wonders and sometimes that can be the first step to you getting help.
As far as the winter goes, take steps right now to find someone who you can get to shovel out your drive way. If you are starting to feel like the drive on icy roads is too much, can you car pool, take public transportation or work from home? Can you work out the responsibilities of your job differently so that it is not so hard on your right now? The chances are very good that you will get better over the next few months. Another option to consider is taking a bit of time of work. Do you have Short Term Disabiltiy or Long Term Disability? This has helped me regroup and get a handle on things more than once.
Again, don't give up. You can survive this. You are just going to have to reach out and grab for some help. You already took the first step in that direction by posting today. Keep reaching. We all need each other.
I expect you to keep telling me how you are doing. My heart goes to yours.
Dear dear Deanna...... I'm so glad you shared your story. I knew you have been through a lot, but certainly didn't know the extent of it. You are such a bright light for all of us here and, I really love all your posts and your insight into this horrible disease. I too, live alone, work, maintain a good front for all my friends, but there are times when I just want to cry ... and then I hear about you and wonder why I feel so bad for myself. I'm probably just scared about what this will be in the next year or so. Like today, a friend of mine too me to lunch and called me later, concerned. He said I looked like I was in pain, had paleness in my face, and wasn't my perky self. I was just tired.. Methotrexate yesterday...so today is always a bad day. And my remicade is due, so maybe that's why I'm not 'chipper'... But tomorrow is another day, and a baby shower, and rest...rest...rest..Your words help me too. Change the day of your MTX to a day when you don't have to work the next one if possible. If you can get you friends to be more supportive at work, it can really make a difference. I felt mine were indifferent although I worked with them for 6 years. The only one to call and check on me in all these months was my boss. They don't even answer emails. No wonder I felt like their gestures were always artificial.
But what a golden friend to show such concern. People outside my group would say things like that, but not those that worked right next to me. That hurts but it made it so much easier to leave the job. Other places, my co-workers were like family. That would have made it very hard to leave.
That's what I hope for you, caring people that will stay with you no matter what.
Thank you so much for your wonderful insight. Yes, this friend is also a healer. He wrote a book called "The gift of hands that heal" after his son was killed in an auto accident. He has been a great person to me.