I was just diagnosed with ra in sept. Doc put me on methotrexate. Had to get off cuz liver counts were high. He is running blood work and is talking about putting me on enbrel Tried predinidone but have bad reactions to it. Enbrel doesnt sound much better then methotrexate. I had christmas with my family on xmas eve. It was at my house. People kept asking for something and I finally got to the point that I said I just cant do anymore. Oh and added to that Sat I was going down the stairs and my knees gave out. Ended up being brought to er. Sprain the left ankle knee and wrist and the er doc said I bruised my left hip pretty bad. He also said there was alot of swelling in those joints including both hands for just being a sprain. Imagine that. I did tell him I have ra but it was like he wasnt getting it. Anyway back to xmas. Today being xmas is usually just the day for me and my fiance to rest. The kids are with there father. When I got up this morning I was super stiff and in a lot if pain. I was still really tired so I took a pain pill and went back to bed. Got up agsin at one and had a relaxing lunch and my fiance ran me a hot bubble bath cuz he could see I was pretty sore. I got done with that and went to my room and started to read and fell asleep again. The next thing I knew it was 7 pm. My fiance had dinner almist ready so I got up and went upstairs. The only thing is my hands had gotten worse throughout the day and when I woke up I could hardly move my fingers. He ended up having to cut up my food for me. I was crying this had never happened before. Yesterday when I would put a limit on myself people would tell me that just because I have ra doesnt mean I can rest. They think I need to push myself more! Alot if good that did me. I just get si depressed at times. I try to explain to my family and the just say push yourself. I feel so alone. Like no one understands. My best friend has been wonderful in helping me out but I dont want to say to much cuz I dont want to sound like a whinner. Are these feelings all normal? Any suggestions?
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Dearest Robin,
I am so sorry you have been suffering. You are new to this disease, so I want to explain a few things. Hope that is okay.
Methotrexate is one of the first drugs a rheumatologist will prescribe for RA, along with NSAIDs ( non-steroidal anti-inflammatory drugs ) such as Naproxen, Ibuprofen, Celebrex, Cataflam, etc. For severe flares, and until the other drugs "kick in" we are often given bursts of prednisone to lessen the pain caused by the inflammation.
Some people cannot take MTX (methotrexate) at all, but some of us can take it at a reduced dosage. For instance, I started out on five pills of MTX a week, but had to reduce it to 3 pills a week because of one liver enzyme being elevated. Since then I have not had any issues. There is also injectible MTX, but it is difficult to find sometimes. Arava is another DMARD ( disease modifying anti-rheumetic drug ) that is sometimes prescribed instead of MTX. It is said to be harder on the liver than MTX, but I know one person who could not take MTX, but can take Arava, so we are all different. We respond to drugs differently.
Biologics, such as Embrel, have been life safers for many of us. I refused to read the warnings on the drug until I had taken it a few weeks. I started out on Humira. It helped a little, but not nearly enough. I am now on Orencia, which has lowered the inflammation markers in my blood ( SED rate & CRP C-Reactive Protein) to normal levels.
Are you taking any NSAID at all? NSAIDs reduce inflammation and help a lot with the pain, too. I cannot take NSAIDs regularly because the make my blood pressure go up a lot. Do you have any blood pressure problems? Has the doctor prescribed an NSAID for you?
What type of pain pills are you taking, Robin. It sounds as though you need addl meds or stronger pain killers until they can find a biologic that works for you. The bad thing about treating RA is that it is a trial and error process. What works for one patient will not work for another. It takes a while to get the med combo right for each person.
As far as your friends and family go, you must be true to yourself. Take care of yourself. RA is an autoimmune disease, so it affects your entire body. The fatigue can be overwhelming. We understand this here, so feel free to post any time you would like to share or vent or celebrate a victory. Some friends and family will probably never "get it". You will make new friends and find out who your real friends are as you go through this process. I know you are suffering, and I am so, so sorry. Can you call your rheumatologist and get in to see him/her?
Please take the time to read about the Spoon Theory. It may help you to understand how you need to manage your energy. And it may help you explain RA to other people.
The Spoon Theory written by Christine Miserandino | But You Dont ...
Dear V
Thank you for that story. I will use it with my friends and family. As far as Nsaids go I can not take them because they to raise my blood pressure and I have some called Barretts esphogus. I am on blood pressure meds also. I do have an appointment with my doc Jan 8th. I seem to have more questions and get less answers. It feels good to have someone understsnd! I was in the injectable methotrexate because of my bad stomach. Thank you sooo much for taking the time to respond to me. My best friend has been wonderful but like the spoon story when we go out stopping at six or seven places or walking in a mall takes away "spoons". Today has been a good day. My hands are working better then they did on christmas and from that fall down the stairs i took on sat i seem to be doing better with to. There are days when i feel good emotionaly and think I can deal with what the ra is going to throw at mefor the day then thete are the days that emotionaly i am not fit to be around anyone. on those days when i am having problems doing something i get angry then cry. I guess this is part of it. Again thank you for taking the time with me. At least I now feel like there are people that understand and I am not crazy.
You are definitely not crazy, Robin. I hope your doctor can help you when you see him in January. If not, look for another rheumy!
It does sound as though he is trying to help you and slow down this disease w/a biologic. You are limited with meds because of your other health issues. Most of us are to some degree, so don't despair and don't feel alone. You most definitely have lots of good company here!
Please let us know how you are doing. In the meantime, you might want to check out this article by Lene Andersen: A Beginners Guide to RA: Pain Management
Blessings,
V
Robin, I too have been through the same as you as far as the lack of support and understanding.My famiy truly didn't get it believe it or not until 2 yrs when my symptoms started physically showing themselves. Now its all good. But sad it took that!!!!! Alot of what your going through is very "normal" for us RA "heroes", cuz thats what we are!!! Most people think its the regular old persons arthritis.NOT, as you know. I as like you have a bf that I WOULD NOT HAVE TRULY SURVIVED ALL THE ANXIETY, PANIC, DEPRESSION AND ALL ELSE WITHOUT HER. My husband was initially in denial because for so long, I was the rock of our family for the reason he is disabled due to having spinal stenosis and having surgery alomg with permanent nerve damage. He was very weak. I thought he was going to die on me at 47..... But, GOD is there with you always(if this is your belief, I don't want to offend you if not). He has given my husband strength back and he strong again, so he can help me. We do alot of tag teamin on everything... My 3 grown still at home kids help too.. What I'm sayin is in time they will help. But enough about me. I am here for as are all of us on this site. It has been my other rock. Weird how a website can sorta be your BF too. But these people are awesome!!!!!!! Please listen to V, shes been my ROCK, she doesnt know this but I guess she does now,lol. And Lene, she my inspiration. Her story makes me have strength, it touched me. Keep pluggin away, rest when your body says to and always listen to your doc and take your meds, and again follow your gut and LISTEN TO YOUR BODY... Take care Robin, may you be blessed in the new year.
Dear Angie,
Believe it or not I alreagy feel that connection with you. My fiance had back syrgery in may. He is now fused from L2 thru L4 and hehad a lamanectomy plus he has spinal stenosis. It has been a long road with him but it actually looks like he might get to go back to work at the beginning of February I do thank God (that is my belief) that this ra didnt raise its head then. I have read and read V's post. She is becoming my rock here to. The other stories I read help alot too. I jjave printed out and passed out that Spoon Theory story to my family. Some got it but some didnt but today that is ok. My 15 year old son did get it. He is like a mother hen over me when I am having a bad day. Tomorrow I see the rhumey and find out whats next med wise. I am learning that is for sure. I realize now that if I push my self hard for a day or two I pay for it for a week afterwards. I got to sit thru most of my sons wrestiling tournament but then had to go home. Three hours on bleachers was starting to hurt. When my son came home I told him I was sorry I couldnt stay for the whole match. This part brings tears to my eyes still. He sat down next ti me and said mom I love you and i was glad to have you there. He pulled out a medal and gave ir to me he had gotten first in the tournament. He said mom this is for you
I wresteled for you todau and you have earned this. He told me that I inspire h amd that I am a strong person.
Dear Angie,
Believe it or not I alreagy feel that connection with you. My fiance had back syrgery in may. He is now fused from L2 thru L4 and hehad a lamanectomy plus he has spinal stenosis. It has been a long road with him but it actually looks like he might get to go back to work at the beginning of February I do thank God (that is my belief) that this ra didnt raise its head then. I have read and read V's post. She is becoming my rock here to. The other stories I read help alot too. I jjave printed out and passed out that Spoon Theory story to my family. Some got it but some didnt but today that is ok. My 15 year old son did get it. He is like a mother hen over me when I am having a bad day. Tomorrow I see the rhumey and find out whats next med wise. I am learning that is for sure. I realize now that if I push my self hard for a day or two I pay for it for a week afterwards. I got to sit thru most of my sons wrestiling tournament but then had to go home. Three hours on bleachers was starting to hurt. When my son came home I told him I was sorry I couldnt stay for the whole match. This part brings tears to my eyes still. He sat down next ti me and said mom I love you and i was glad to have you there. He pulled out a medal and gave ir to me he had gotten first in the tournament. He said mom this is for you
I wresteled for you todau and you have earned this. He told me that I inspire h amd that I am a strong person.