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Hi, My name is Tracy and i am 40 yrs old. I was just diagnosed with RA 2 months ago. My doctor immediately put me on prednisone (7.5mg/day) and methotrexate (10mgs)/week. Because of increased pain, I just went through my 2nd round of increased prednisone starting at 40 mg/day down to 7.5 mg's/day. I'm still in such pain. Will I always be in such pain? My ankles, hands/wrists and neck, especially, are in great pain still. My question is what is normal now? Is this level of pain expected in the beginning of diagnosis until the medication kicks in??? Should I always expect to be in a small amount of pain? Or is it okay to assume that this chronic pain will go into remission at times with flareups? I'm weary of the pain. I have a very active 18 month old toddler and it's hard to take care of him in such distress. It's hard to remain positive when all you feel is pain with no let up. I'm currently waiting on an appt from another doctor to seek a 2nd opinion to make sure i'm on the proper treatment for me. Any advice and help would be greatly appreciated. I'm thankful to have found all of you.
Hi Mstracy, I am a loved one of someone with RA, my boyfriend. He was diagnosed this year, and from that day, I have been researching, reading as much as I can about RA and treatment. I go with him to all of his appt.s and bring a binder filled with all his labs, meds, and info on ever med on the market for RA. I ask tons of questions, so many that the RA docs are shocked at times. They will put you on meds and not even tell you all the side effects to look for. Forexample, if you are started on Plaquinel, you need to have an eye exam before you start because it COULD (rare, but could) cause some retinal damage, which was not informed to us by the MD. Okay off my soapbox, first drugs they usually start on are steriods and Methotrexate or other DMARDS. I beleive you can go up to about 20-25mg week, before trying something else. My boyfriend is on 20mg/week and it does not take his pain away, he feels like he's 60 (he's 31)! I have also read that being more aggressive in treatment in the beginning is better to reduce joint/ bone damage. So just ask your MD what his plan is for you. Remission means you are living with min. to no pain, to get back to where you were. It is a struggle and I have cried a lot but I know there is a light at the end of the tunnel, and you will find your light too! Thanks for listening and let me know how your 2nd opinion goes....
HI, My name is Steve and I am 29 yrs old. I was just diagnosed 2 months ago with RA. Like others my Dr put me on prednisone and also a anti-inflammatory. I went through 2 major doses of the Prednisone and is really seemed like it worked, but the Dr took me off of it do to the long term side effects and just left me on anti-inflammatories. I go to the Remotoligist this week to so what they are going to do for me. It really scares me cause they have had me on several different meds and they havent worked. I have a brother that has Chrones and takes the Remacade fusions and they work for his Chrones and also his RA. I am just so tired of the pain. I work for a local Sheriffs Department as a 911 Dispatcher so i work on a computer alot and also sit alot, and its like it takes everything to get up out of my chair and to just move around. The next day is the worst, and its getting so bad i have missed work, not being able to get out of bed. I also have 2 young boys 7 and 4 and they are so active there are days i cant even do anything with them i hurt so bad. Does anyone have any help what i can do just to get through the next few days. I feel so bad some days i feel older then my dad and he is 60. Please i will try anything. Thank you
Hi, I am also new to this site and was recently DX with RA 6 weeks ago. So far I have been on a Medrol pack, which was a miracle drug for sure. Then my reumi put me on MTX 4 pills a week and prednisone 10mg daily along with Folic Acid 1mg daily and Darvocet for pain. I also have servere DJD in my neck and lower back and have horrible pain and headaches from that. I just went today for my appointment with the reumi again and he took me off the MTX because of the side effects (nausea, stomach pains) and switched it with Avara 10mg daily for now, he decreased my prednisone to 7.5mg daily and that is about it. I guess it is true when they say you feel like a guinea pig in the beginning, or maybe for the rest of our lives looking for the right cocktail so to speak to keep ourselves moving and with as little pain as possible. The prednisione is the only thing to date that has kept my pain bearable, so I am alittle afraid of how I will feel with the decrease, but the side effects of this are also not good.
anyway I am 46 yrs old and have 3 grown children and a wonderful husband. We have 4 grandchildren 1 boy, 6yrs old, 3 girls ages 4, 1 and 2 weeks as of today. they are great and wonderful and just a great distraction from my misery at times, just pure love and they call me Mimi.
I rencently have not been able to work and that is a big financial burden for my family, but with my husbands salary and his support we have been getting along OK for now. I hope to be able to find something for maybe 2-3 days a week where I can have a little freedom to sit if necessary and stand if necessary because doing either for any lenght of time is really hard.
Anyway I am also a good rambler, so I will go for now and hope to meet you all and offer whatever support I can and get much needed support from others who are dealing with the same issues as I.
Hi, my name is Cyndi and I'm 30yrs old. I have my first dr appt Friday but arthritis runs in my family and I don't know what else could be making me feel this way. It takes 20min or more to drag myself out of bed. Some days it's hard to walk and carry around my 13mth old son. Like Steve, I work at a 911 center working at least 40hrs a week sitting in a chair. My two days off I spend at home between a heating pad and ice packs for my knees, back and wrists.
My question is how do you handle your employer? Any suggestions on how to tell them and how to explain to them? Also, do you go to work in pain and are there any suggestions as to what one can do to relieve pain when you are at work?
Hi, My daughter is getting a lot better by taking apple cider vinegar/molasses and Manuka Honey. Why not look at the Margaret Hills website and or this excerpt from her book
http://www.mypharmacy.co.uk/health_books/books/t/treati...s_drug_free_way.htmn It seems to work for so many people. If you cannot bear the apple cider vinegar then you can get capsules. You also need to be careful re. vitamins/mineral and your diet. Very interesting book and many people swear by it. Worth a try! Take care.
I'm 46 years old and have had RA for the past 15+ years. I haven't taken anything for pain for the past 9 years! I have learned to manage my pain, with the help of my occupational therapist from the Arthritis Society. I have pain every single second of my life somewhere in my body. So why not take medication? Let me tell you!
1) My rheumatologist told me that there are three methods of treatment to slow the progression of the disease: first is plaquenil, then gold treatment, and then methodrexate (which is a chemo therapy drug).
I was very leary to take plaquenil because you can lose your eyesight, which is why you need to get your eyes checked every 3 months by an optomologist, not an optometrist. I finally decided to take it anyways after the first year of having RA. Got my eyes checked 3-4 times and everything A-okay! I stopped taking it a little over a year later. I decided that I would try to manage the pain because the side effects of drugs make me nervous.
So the plaquenil was in 1994 or so. By 1998, I couldn't take the pain anymore in my knees. When I would stand up, I would have to stand and not move for about a minute just to "get a hold of the pain" so that I could move. The pain was unbaerable! It was then that I decided to go back to my rheumy and she put me on the gold treatment (liquid gold is injected in your system). She also wanted to give me prednisone shots for the pain in my shoulders, but I told her that I would put that off to see if the gold shots would take care of that. It did! The gold shots were to be taken once every week for a # of weeks, then every 2 weeks for a # of weeks, then 3 weeks, then 4 weeks. I would get a blood test to check my platelets on Monday, and then get my gold shot on Wednesday. I was on my second shot at the 4 week interval when the problems started. I noticed that after my shot, I would be bedridden for 2 days. I couldn't breathe deeply without getting chest pains. I went to my family doctor and asked his nurse if she knew of the side effects of gold shots. She came back with a "white" face! She gave me a photocopy of the side effects. The shots were causing me to have inflammation of the respitory tract. I also noticed that I was supposed to have been monitored for the first 15 minutes of every shot to make sure that I didn't go into annalyctic shock! Nobody ever told me about these side effects, not my rheumatologist or my family doctor who was giving me my shots!
About two years later, I was starting to have problems with my blood. I just recently got my anemia under control. I lost about 51 pounds in 5-6 months! My stomach/colon specialist was the only one who said that this wasn't normal. I'm okay now!
My blood specialist told me that I have to get a certain type of blood test every 6 months to check for melanoma (some type of blood cancer). Doctor told me that I have protein in my blood. I later found out that gold shots can cause your kidneys to leek protein into your bloodstream. Nobody told me about this side effect!!
I then decided to go see another rheumatologist (we only have two in our city). He wanted to put me on methodrexate and Vioxx. I cried in his office and it was then and there that I finally accepted my disease. It took me 8 years to accept it.
When I asked him the side effects of methodrexate, he wouldn't tell me. He said that it would scare the shit out of me! My dad found this Physician's book of some kind that tells you everything about certain types of medications. I read on methodrexate and couldn't believe it. I told my husband that it was a chemo therapy drug and it can be fatal.
When I asked him what would happen if I didn't take it, he said that if I didn't, I would be in a wheelchair at 70. If I take it, I would be in a wheelchair at 60. I decided that I would rather be in wheelchair at 60 with a healthy liver then be in a wheelchair at 70 and with more health problems from the drugs. Especially after my experiences with side effects.
I use a wheelchair now at 45 when I go shopping. It's easier on my feet and knees, and saves my energy. I also use those electric grocery carts that they have in stores now too!
I don't take any meds at all! I have a very high pain threshold. I got no choice! Pain management helps and, believe it or not, "mind over matter" that lasts as long as 30 minutes. I have learned how to get my mind off of the pain, especially when going down or up stairs. The times that I don't have much pain in my knees, I can't sleep! LOL I am so used to having pain in them, that I have to then move them in certain positions that give me more pain. Weird, I know! LOL But... if I have too much pain in them, I can't sleep either cuz it hurts to move them.
The way I see it, the medical treatments available for RA doesn't not take the pain away. It just slows the progression of the disease. So what's more important to me? The pain or possible side effects of meds that can cause me more health problems and I will still have pain? I prefer to take nothing.
I have a new family doctor for several years, and he can't get over me not taking anything. My RA factor was 5,000 several years ago and he said the highest he's ever seen was 200. My naturopathic doctor once told me that, in his opinion, my RA will burn out! Not sure what he meant by that.
I can talk more about my experience with RA and my naturopathic doctor if you want me to. Just let me know. My hands are sore now! LOL
I will say, however, that my chronic illness has been very hard emotionally on my 15 year old daughter. If you have kids, try not to show your pain in front of them. It does affect them. More than you know!
In my experience the pain is temporary although it does recurr. Once the disease modifiers start to work you will feel better.
I wish my doctors had put me on prednisone when I first got sick it would have given me three years of life instead of disability. I am on them now with a different rhuematologist and they definitly help.
You did not mention any non steroidal antiinflamitory drugs such as sulindac or ibuprophen they should probably be part of your arsonal as they help manage the pain and inflamation.
I have had RA all my adult life, now over 45 years. I can tell you rheumatoid specialists are SO brainwashed by the drug companies as to be dangerous. They will not tell you how you can help yourself because they get no kickbacks. I was on several of the drugs when I was too young to know I could just say no to the doctors. I did the research myself, at the medical library (before the internet) and found other countries manage RA very nicely with fasting, then vegetarian diet. I can promise you, staying clear of animal protein is of huge importance with any inflammatory disease. I have now been vegetarian for many years - it is worth changing your bad eating habits to feel better, and it can get you off drugs.
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