Thursday, July 03, 2008
Hi, everyone my e-mail address changed and I haven't been able to get in. I hope everyone is feeling well!! as for me this past week has been hard for me I was really having pain all over I was away at my brothers house, house sitting and my legs were really killing me my right shoulder still hurts and it's been hurting for about a month now my hands were hurting so bad I just didn't want to move them I have been taking pain pills to relieve the pain. I still have not decided if I'm going to take the Humira my appt. is in August hopefully by then I've made up my mind. But it's great to be back and I hope to hear from everyone and I hope everyone is doing well and have good news!
Hey, everyone I just went to my doc yesterday, and my blood work came back good for my liver level!!!! the bad part is the doc put me on humira. I hope everyone is feeling well, as for me I have been doing well for the past few weeks! but for the last couple of days I started feeling the pain on my knees and feet. I hope everyone is o.k. I have not heard from anyone! I hope to hear from you guys.
I was diagnosed in August of last year. My rheumy started me on Methotrexate right away, 4- 2.5 mg once a week, then increased up to 6 per week. By January of this year and after being on 2 Celebrex and 1 Lyrica daily and 15 mg. of MTX weekly and the disease still progressing, I began Humira in January, and within a few weeks I noticed a significant difference. I felt like I was on a rollercoaster just going downhill until I started on Humira. I know most of the drugs we take are dangerous...asprin is dangerous if not taken properly. I see my doctor every 2 or 3 months for lab work to make sure my liver functions are within the proper levels. I was reduced to 12.5 mg per week of MTX after my last labs - liver functions were high. This week they were down to normal but I have had a 'very uncomfortable' month. Right hip and lower back pain is basically daily. I only take Tylenol Artritis Strength (generic brand) as needed for pain. I also take Flexoril at night if I need it for back pain. My rheumy is increasing my Humira from 1 injection every 2 weeks to 1 injection every 10 days to see if that can get my pain under control. He also ordered an MRI of my back and hip for when I see him next month. I have degenerative disk disease in my lumbar back and herniated disks, the MRI will show if I have pinched nerves, etc. I know I stay with back pain and I hope for some relieve. But I must say, that I don't know where I'd be right now if I had not seen my rheumy and started on Humira. So all I can do is praise this drug. I only hope the price goes down eventually. Make sure you find out about the cost and if you have insurance - how much you'll have to pay. Remicade was much more expensive for me, so I chose Humira. For now it is helping me and I will suck up as much as I can while I'm working and on insurance!!!! Because when I do decide to retire, I'm pretty sure I wont be able to afford this medicine. I wish you all the best.
God be with you,
Audrey
Hi, Thank you for your response.I'm suppose to start the humira in August I have to get some bloodwork done this week, I have not had a flare up in several weeks but out of no where today my fingers started hurting so I guess I'm starting to get a flare up just when I started feeling good! It's like this disease teases me it's funny how when I do not have any pain I totally forget that I have RA, as soon as I try to do something that I use to do here it the pain. I hate taking medication I always did I was hoping I would be able to get away without using the humira! I just sometimes think that maybe I don't have RA and it's just my imagination I go through a denial stage from time to time! I'm afraid to start working and not be able to do it, it's hard enough now trying to get the house work done. I just do not feel like doing nothing I'm even starting to feel alone and helpless I'm not even feeling good about myself! and that is not me. So, do you think it's a good idea to try the humira? because the doc wanted me to do the infusion. Should I try the humira first and see how that goes?
Your bloodwork and what you tell your doctor regarding how you feel will determine if you actually have RA. Of course it's not what we want to hear, you have RA, but we have to do all we can do to help keep this disease under control to our BEST ability and you MUST be able to trust your rheumy!!! My rheumy wanted to start me on Remicade after the disease was still progressing after MTX, Lyrica and celebrex for 2 months, but I checked in to the cost of it all through my insurance company and my doctors office. Remicade is very expensive - infusions cost approx. $5,400 for ONE. I had to come up with 10% every 2 months. I couldn't afford that - I'm divorced and live on only my salary. So when he suggested Humira infusions I asked about the shots I could give myself at home. My rheumy is 25 miles away and working makes it difficult to take off too much time, so I opted for the Humira injections at home. I've given myself allergy shots for over 5 years - I could do this. So since January 2008 I've been giving myself an injection every two weeks. I went last week for my checkup and he increased my meds to an injection every 10 days. He had taken me off of 1 MTX down to 5 per week because my last liver functions blood test was high. I've noticed more pain since then and it's getting worse, so he increased my dosage. I tried mowing my small lawn yesterday and was basically crippled by nightfall. Hot bath, cold pack, heating pad, pain pill, etc. just to mow 1/2 of my small lawn. Something I've always taken pride in was my yard and now I can't do anything!!!! It's so darn frustating, but God takes care of me and gives me other things I can do inside to keep me busy. I'm having an MRI of hips and lumbar in a week or two so he can see what damage I have. He's pretty sure I have at least 2 herniated discs, don't know yet what can be done about that? Believe me, you are not alone in this dreadful disease...it is a scarey time for me also, and many of us get depressed, but you have to remember to take control of as much of your treatment as you can! Get involved with your doctor and show him you want to fight this disease! I'm trying to get as much treatment as I can while I'm working and have insurance coverage so that when I retire in about 7 years I will have done all I could while I could afford the care that I probably will be without. My mother has osteoarthritis with scoliosis and all three of my daughters seem to have a little of the scoliosis in their backs and now they also all want to be tested for RA because of my diagnosis. It makes me so sad that we pass on things to our children...bad things like these diseases.
I pray you will make the right decisions for YOU - we're all different, but I KNOW that without Humira I don't know where I'd be right now. I wish you wellness and happiness.
AudreyBee
Hi, Right now I'm not working I just finished school in May, and I was taking a little break I went to school for Medical Assistant and now I am looking for a job! but my fear is that sometimes it's hard for me to use my hands because it hurts so bad!!! and part of being a medical assistant is drawing blood, taking vitals and giving injections I'm afraid that the day will come where I need to draw blood or give an injection and I won't be able to do it I mean what do I say to my boss I can't do this today, I don't know when the pain will go away, or the stiffness that's my job they would depend on me to be able to do my job! I just don't know because really want to go back to work and having a new job I would have to be there on time and do what they expect me to do! and alot of time I can't even get out of bed because my knees are so bad that I can't even walk! If I would have been diagnosed with RA before I started school I wouldn't have started.This is really hard and scary and I'm so tired of it because I'm limited in what I can and cannot do.
YOU'RE GIVING UP BEFORE YOU START!!!! Don't give up just yet! I'm telling you once you get on medicine like Humira you WILL notice a difference. I sit all day (which is fine as long as I don't have to get up!) and I'm on a computer all day, typing and answering phones and calculating....always using my hands and my fingers. When I first went to my rheumy my elbows were red and swollen, my wrist was swollen and I could barely move my left hand. All this would have continued to worsen if I had not seeked help. If you have a GOOD preventive rheumy you will get started right away on meds that will help prevent RA from damaging your joints. That's what you're looking for right now.....preventing damage.... you must start on meds asap! It's 4:40 p.m. right now and my knuckles are swollen and stiff, but I'm still typing away. My back is killing me right now, my left foot is numb and I know I'll be suffering tortures when I try to get up, but I DO IT!!!!! You can't give up before you start a job! you went to school for a trade to help yourself...now you have to help yourself get a job and do all you can to get yourself well or on the way to recovering a flare up! I have a daughter basically doing the same thing righ now. She finished dental assistant school, had a job and got laid off due to cut backs, got depressed and now sleeps till 11:00. That's not like her, but she also has hyperthyroidism and is not taking her meds because she can't afford to go to the doctor because she doesn't have a job....vicious circle! Weigh the pros and cons - you were not given a death sentence just yet Madeline, you have to get up and GO! Don't give up on yourself!
I'll pray for you and hope you will get a better attitude about this wretched disease and how to cope with it.
Blessings,
AudreyBee
Hello! I don't think I'm giving up, I'm just afraid! I don't want to hurt anyone if my hands are hurting I would not be able to do my job! right now I am looking for work. I am just hoping that I don't have a flare up while I am working because that is what scares me! I'm the same way as you I type and I do push myself knowing what is in store for me later that night, I take any kind of pain pills so I can move around, before I was diagnosed with RA I was working at a hospital and I had no clue of what was going on with me and why I could not get up in the morining or why it was so hard for me to drive and why my hands couldn't hold anything and my neck was killing me and it got so hard to park the car I did not understand what was going on with me! but I pushed myself everyday and it hurt like hell!! and I would make it to work crying but I did it and I would do the same now, but the only thing is that my job would be different now because I would actually will be having full contact with the patients adults and childern and I am afraid giving an injection or drawing blood if I'm having a flare up on my hands because when that happens I feel like I do not have control of my hands! and it is really important that I give an injection the correct way and when I draw blood that I am able to push and pull out the tube that the blood goes in and not drop it because if I do that means the patient would need to get there blood drawn again or an injection has to be done over and they would not be very happy with that! It is hard enough to give an injection or draw blood from a child that has to be held down by several people can you imagine if I screwed that up.
You know what? Your description of the pain you've been going through sounds like the same thing I've been going through. That's what all of us with RA DO have in common....the dreadful pain that no one can understand unless they've been through it. My co-worker is on vacation this week so I couldn't go to my rheumy out of town. I got squeezed into my internist in town after work cause he knows my condition. I could barely get up and walk into his office only to be told he wouldn't give me a shot in my back or hip without results from an MRI (scheduled in a week or so). He couldn't give me Toradol for pain and inflammation because I was already on 2 Celebrex a day for inflammation. As much as I didn't want another RX I did take one for generic Lortab to help with the pain. Just a 5 mg one or two 4 x a day as needed for pain. Well my pharmacist told me try 1 during the daytime and take 2 at night, so I took 2 at bedtime. I slept like a baby and woke up so much more relaxed this a.m. I plan on taking on this a.m. after breakfast - I'm so glad I don't have to be in pain all day again like I'm been all week. If my co-worker was in I guarantee I would have been out for at least 2 of the past 3 days.
Madeline, if your appointment is in August with your rheumy, can you put off getting a job until you meet with him/her to find out about what meds you'll be on? I don't know your marital status, if you have another income in your household so you could put off the hunt for a job until you get yourself going on meds for RA, possibly Humira or Remicade to help suppress the disease. That way you'd be feeling better than you are now. After that, you'll just have to take it one day at a time and pray for God to guide your hands in the tricky things you're so worried about, i.e. injections, drawing blood.
I've added your name to my prayer list today. I hope you feel better really soon.
Blessings
AudreyBee
Hi, I have thought about not working until this is in control! but I don't know how long that will take, so I was going to work until I could not do it anymore! I don't want to be missing work 2 or 3 days because of this disease either I work or I don't we are limited in what we do. But I am going to see my doc on the 11th and see what she says, but as for now I am planning to go back to work! hopefully, God willing!! and I will take it day by day and just wait and see what happens I guess. and your right no one understands what this feels like they will say well I have arthritis and it does not hurt that bad your so overly dramatic and I start to cry!!! because there is no way to explain it to them unless they are going through it, they will see my hands and my feet swollen and say maybe you hit or twist your knee or your foot without realizing it and I will say no you just don't understand the kind of pain this is, I also tell them to look it the RA so they can have a better understanding, and if I am near my computer I search for them so they can read it and see it for themselves. But they won't ever know how bad this pain is. I will talk you later!