Question and update

By yiyelli Sunday, July 17, 2011

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I hope that everyone is doing well. so this is a mini update, questions or maybe just a place for me to reach out lol. I have been on Orencia for about a year and trying to figure out if it is working, Is this is as good as it gets or do I need to try to talk to my doctor about starting a whole new biologic. Maybe it is working and my strange symptoms the last month are from being sick and not on methotrexate for two weeks and getting my Orencia infusion late.Every time I think I get a handle/understanding of this whole RA thing it says haha just kidding. So my hands and feet were where the disease really hit me. After about six months on Orencia my hands and feet feel so much better but my knees over the last month have been killing me. They crack are stiff every step hurts which has lead to very irregular sleep. Also, my lymph nodes behind my ears gets swollen and I feel like they have fluid in them and have had some jaw pain in the past during flares. Too bad we can not pick the joints it effects. Sorry if I am rambling but husband does not really understand he tries but I always feel like I am whining about something.... And I am tired of that lol. It's hard to figure out what you should just accept as part of the disease and that I have to deal with it or if I should try to see what other biologics might due. I don't want to start over again. I even talked to my Psychiatrist who I now see (thanks RA) now that myADD, fatigue, brain fog have become unmanageable about not being able to sleep dealing with chronic pain, trying to raise two children etc and she said you are too young for all of this ...... Guess my RA did not get that memo. So maybe it is the sleep deprivation, frustration but had to get this out there so I know I am not crazy lol. This is such a great group and have learned so much from all of you. Any advice, coping tips p,ease send them my way. It is hard to not beat yourself up when your two year old wants you to carry him and you can't:( thanks for listening sorry if this is all over the place name it on lack of sleep. I either go days with only sleeping 2-3 hours to sleeping 12 lol. deep breaths right...... I am on vacation next week with family in Florida so at least that gives me a week to figure out next steps and have a medal dose pack just in case :) Gentle hugs Yael

Comments (5) | Add comment

yiyelli

7/17/11 3:55am

I was two finger typing on my iPad... Lol

V, Health Guide

7/17/11 9:03am

Sorry to hear you have trouble sleeping. That just makes the RA worse, which I am sure you know! LOL I'm probably not the person to answer your questions, becasue I just started meds this past May, and am still trying to get my RA under control. That being said, I don't like hearing that you have swollen lymph notes and that your are still so fatigued. Have you talked to your RD about all of this? I am no expert, I am just a patient like you, sweetie, but it doesn't sound as though your RA is under control to me. I would definitely tall you the doc about your concerns. I hope you have a good vacation and get some rest and relaxation!

Ratnapriya

7/18/11 3:32am

I do not at all like this swollen lymph nodes business. Since you are on biologics it is important that you talk to your rheumy ASAP about that lymph node. Also you do not seem have that med working for you. We with RA know that with pain you cannot sleep. So you are not alone.

Wish you a quick remission.

Ratnapriya

Debra

7/18/11 9:19am

One of the interesting things about our runaway immune systems is that they seem to find ways around the medications pretty fast. See your doctor and switch to another kind.

I understand because I am in the same boat. So far only my first six months on Methotrexate made me feel anything like normal. Since then I've tried Enbrel, Remicade, and Simponi. Each might have helped at first, but it was hard to tell. I'm seeing the doc today to discuss a new one.

Lene Andersen, Health Guide

7/26/11 9:18am

if your symptoms are new, don't accept them, but contact your rheumatologist to discuss the issue. Changes in symptoms are the key - obviously, you don't need to call your doctor in a panic if the changes are for the better, but if you had been okay and things get worse, that's definitely worth a call. And when you feel like you're whining, remind yourself that you have a chronic illness that's attacking your body. It is okay to express your difficulties - hiding them get you nowhere. Perhaps one of the things you can do is send your husband to this website so he can learn more about what RA is and better understand what you're talking about.

cleaning is a huge aspect of coping better, so I'd recommend you talk to your psychiatrist or family doctor about your problems so they can be addressed. If you're not sleeping well because of pain, ask for some painkillers or a referral to a pain specialist. Still, if your pain levels have increased, your first call should be to your rheumatologist as it may be a sign that your meds need a booster. Perhaps you're having a temporary flare due to having been sick and have had a delay in medication and you can talk to your rheumatologist about getting a bit of prednisone to help you recover.

Lastly, I'd also recommend you check out our ADHD site - there are some wonderful people over there who may be able to give you some pointers on how to cope with that aspect of your situation.

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