My name is Jennifer Thatcher and I was diagnosed with Juvenile Rheumatoid Arthritis at 13 years old, which was 17 years ago – gee I feel old.
I am writing this blog post as there are a few newbies out there and I hope this helps them along their way. The sad thing is there will always be newbies out there as unfortunately I will not be the last to get RA.
Once upon a time RA was difficult to treat but with all these new drugs RA can be manageable and sometimes even go into remission.
When I was first diagnosed I was put on aspirin, then as the years went by I was put on many anti-inflammatories. As my arthritis became even more active I was put on my first Disease Modifying Anti-Rheumatic Drug (DMARD), Methotrexate. This helped to treat the RA for a while, then again the disease activity started up again and I was put on Plaquenil and then later on Arava. After all these failed I started my first Biological Disease Modifying Anti-Rheumatic Drug (BDMARD) which was Enbrel. This gave me some relief for a while but again became ineffective. So at the moment I am on my dream drug Orenica! So with trial and error I have found a treatment that makes it possible for me to work full time and be able to enjoy having fun with my husband and friends.
It can be frustrating at times when a drug does not work and unfortunately as everybody is different not every drug will work or even work the same, and the same with the side effects. So continue to work with your doctor for the best solution for YOU. If it helps, note down how you are feeling including any pain and fatigue and if you experience any side effects. Be as open with your doctor as you can because even the smallest detail might help your doctor get you on the right treatment. So please do not give up hope. As research continues they find more advanced drugs and better treatments for RA. Once there was just Aspirin and now there is a whole range of different drugs.
Another frustrating thing of the medications is a lot of them take some time to work. Most DMARD and BDMARD’s can take up to 3 months to work. Where the anti-inflammatory drugs and corticosteroids work nearly instantly. The side effects of the drugs can be scary but you need to be able to discuss this with your doctor and weigh up the benefits and risks associated with the new drug. When I first went on Enbrel the side effects did scare me and I had to have a few tests to make sure I was able to start taking the drug. Once I saw what the drug could do for me after discussing this with my doctor I knew it was the right decision for me. I was able to go back to the gym (bike riding only mind you) and to aqua aerobics. Once Enbrel’s effects wore off on me and my site reactions were getting rather large and the tingling in my legs and feet started I knew it was time to move on to my next drug. So after discussions with my doctor we decided on Orencia. I have had fantastic results with this drug and have been on it for over a year. My side effects are not severe, with only a stuffy nose and tiredness after the infusion and are usually gone by the next day. I have also got another great team member on my side to help me with my RA and that is my infusion nurse that gives me Orencia – bonus! When dealing with RA you must keep in mind that you are trying to slow the progression of the damage done to your joints. Also you want to stop any progression to any other organs. So being patient helps but when in pain and fatigued this can be hard. Having a support group around you is very helpful.
Growing up my parents were fantastic and now my husband is my rock. Possibly the reason he is so good is because he grew up with his mum and dad having arthritis. He is usually the one telling me to slow down and to think about how much I am doing and how it will affect me the next day/next week. He usually cooks my dinner, takes me anywhere I need and is very helpful getting lids off, lifting heavy things and reaching in low and high places. But best off all he is my strength, listening post and best friend when I am not doing well. But when I think back to previous loser boyfriends I am glad I met them and moved on. As much as it hurt at the time I know they would never be what I need them to be now. I only have a few close friends but they are the best and very supportive. I did have many friends in high school but possibly people I would not share my deepest secrets with or my health problems. Now the friends I have are people I can really rely on. I have been known to take them into the doctor’s appointments with me when they have driven me, as I could not drive at the time. Some have had the pleasure of dropping over to find me in my PJ’s but I knew it would be OK. We just sit around chat, eat and watch movies when I am not doing so well. I don’t do the party scene anymore as I need my more than 8 hours sleep. So friends might go but you will know who the keepers are and they truly are your friends.