I am new here. Whereas, my diagnosis if fairly recent (Feb, 2007) my rheumatologist says it is not new to me. He believes I have had it for at least 20 years based on my history. For a year prior to seeking a second opinion I was told by my PCP that I had Fibromyalgia. At the time I went to her I had a history going back over three years with pains and muscle problems. At 18 I had a severe knee problem that the docs after many many tests labeled as Juvenille arthritis. Hence the 20 year estimate. None of the treatments were working and I was getting much worse. Currently my entire back, neck, shoulders, forearms, wrists, hands - including fingers, hips, knees,ankles and feet are effected. Since my diagnosis and Xray of my back showed bone spurs on the lowere vertabrae and fractures in the tissue that connects the vertabrae to each other. I have had to stop working. I cut my hours to just 4 a day and it was still to much. I have been on Celebrex, Sulfazine, Methotrexate since late may(currently at 17.5 mg)- taken with 3 mg Folic acid daily and Leucovorin 5 mg 8 - 10 hours after the Methotrexate. 6 weeks ago he added Arava 20 mg a day. As needed I take Phenergan (to combat the side effects), Hydrocodone, Skelaxin, and prednisone. This does not even account for what my Neurologist has put me on due to other problems.
So far no relief. The pain meds keep me moderately upright and mobile and ease the pain just enough the make the days bareable. The doctor told me if the Arave doesn't work we will try Enbrel (once a week self injections) or Remicade (once a month IV infusion). I get lots of advice from friends and family. A good friend who is a nurse said go for the once a week injection. My sister and another friend said IV infusion.
I am really tired of having to spin the wheel of meds to see which one we try next. I want my mobility to at least maintain if not improve. It bothers me greatly that I have family who live about an hour away and I can't drive that far.
Does anyone have experience with both of these meds? I don't like the idea of having to give myself a shot nor do I like the idea of an infusion that takes 2 or more hours a month. Do they let you get up and move while doing it? Or would they let me use my heating pad? Does one work better than the other? That is what I really want is to use the one with the better chance of success. I have always been a realy do it yourselfer. I could rebuild a carburator when cars still had them, change a tire and lube a car by age ten. Ten years ago we bought a home and my father in law decided we needed more gottering and I was the one assisting. I also built 3 large flower beds, a raised vegetable garden and an herb garden and tended to them all the time. Now it hurts to sit for 20 minutes. I made the mistake of mowing half my yard one day and I knew I was in trouble. As I stepped inside I yelped in pain. The muscles will spasm and knot up all the time and they are very visible. A couple of months ago it got so bad my husband had to sit me up in bed, lift me out, help me undress, dry me off from the shower and help me get dressed. Occassionally it still reaches that point. So I am really hoping to get some relief. Any suggestions?
I have been there, exactly where you are. But i changed course about 18 months after i had been on the full lot, sulphasalazine, methotrexate, prednisolone, brufen, folic acid. I didn't feel any better and i felt nausous all the time and the fact that i had to keep getting blood tests to check whether my liver and kidneys were handling it, turned me off big time. So i took a real risk. I stopped taking everything and spent the next 2 years trying to find a natural treatment. I've since had bowen therapy, some wierd chiropractors version of illiosacrillic (or something) treatment, normal chiropractic treatment, naturapathy, meditational pain management, yoga specifically designed to release the pain and flex the specific joints, physio, bowel cleansing, acupuncture and now i have been attending a chinese therapist for 18 months who uses cupping. This has been, by far the best treatment and had the best results and I feel like i have really improved from the vegetable who needed help to get dressed 3 years ago.
My gp is not happy about it, but allowing me to try and this chinese guy is telling me that the toxins in my blood and bowel are feeding my disease and if i can get them under control, i will be half way to curing it. Who knows, is he conning me? Well all the others, including the rheumatologist reckon they could control it or cure it, and i gave them all a shot. He costs me a week and I have been going for 18 months, the stupid private health cover only covers me for 0 pa of natural medicine, so i am out of pocket heaps, but i haven't got the side effects of the medications.
So i don't know whether it will work or not, if I could just break through I 'd be happy. I always was a 'fix-it' person, but i am very frustrated that i cannot 'fix' this!