Second round of BW

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Second round of BW

Postby missgamecock » Sat Feb 27, 2010 11:48 pm

Absolutely NOTHING has changed. My inflammation factors are still very high even though I am on 15mg of mobic (anti-inflammatory) which is the maximum amount and 10mg of prednisone a day.Nothing changed at all. How depressing. So we know it's not viral, it's not because I had surgery and that it is most likely autoimmune most likely RA.

The nurse said no wonder you feel like crap and that they had expected my rates to have lowered with three months of meds. We are still waiting for the RA and lupus test because those had to be sent out.

The nurse said the dr said to continue all meds. If I need pain meds to call (I have a rx for lortab for the joint pain). I am to keep my appt on the 8th with the rheumatologist. I was talking to a guy at work that has RA. He said that when I see the rheumatologist, I may have to go on injectables since that much anti-inflammatory and the prednisone did nothing. ACK. I don't want to stick myself with a needle! I mean I can handle needle sticks (who can't after PE?). It's just the "thought" of giving myself an injection. If it works, I am willing to try it at this point. I get exhausted with very little work. My joints swell at any type of activity. Example, I shampooed the upstairs carpets (didn't move furniture or anything, went around the furniture) a couple of weeks ago. I had to leave work the next day because I was so "sick". It took 2 days to recover. He said you have to rest when you need to rest and do what exercise you can when you can do it and are feeling up to it. He said the injectables (humira) worked awesome for him and he started feeling better within 12 hours of injection. I just feel my really busy life coming to a huge STOP. I am having to figure out how to do the things I used to do a different way.

Fortunately, my work is being awesome. They have offered all of us work at home up to two days a week. Since they moved me to the hospital right by my house, I really do not have a need for it unless on bedrest or maybe if school is closed, sick kid. I sent an email to my boss and explained what was going on (I feel terrible because I JUST started there in July, but I must not be doing too bad if they moved me to a hospital by my house to make life easier for me and to give the engineers someone they can just stop in and talk to). I told her I go to the rheumatologist on the 8th. Not all the time, but sometimes I get really sick (very sore, malaise, exhausted). I gave her the example of when I did the carpets. She said she had no problem for me putting in for work at home adhoc. That if I was sick like that again, I could go home and rest for awhile and then work that night if I was up to it to make up the hours. HOW FREAKING AWESOME IS THAT?

So I am really glad to have such a supportive work place. I was just really bummed nothing had changed. So off to be poked and prodded by the rheumatologist. Just answering their paperwork was extensive and exhausting. Symptoms that they have you check off, I never even thought of. Like mouth sores. I used to get one or two a year. I have been getting 5-6 at a time every few weeks for the last 6 months. I thought it was because I wasn't brushing well or something. It's an autoimmune symptom! There are other things that I never thought of. The hospital that I am going to is a major university hospital. It's the one that I went to for my endo and they were WONDERFUL (I would deliver there if I had to go before 35 weeks if I could but they send you to the OTHER childrens hospital and hour and a half away. I live between both hospitals equally). I havn't really had too many issues since the dr cut it out last May. I still have issues with the adenomyosis. Not with the endo too much right now. Supposedly their Immunology and Rheumatology clinic is very good.

Sounds like I am getting an answer as to why PE so many times for me.
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Re : Second round of BW

Postby trish » Mon Mar 01, 2010 01:16 pm

Glad to see you have such a supportive work place! Hope you find solution to feel better soon. (((HUGS)))
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Re : Second round of BW

Postby aggie95mom » Mon Mar 01, 2010 04:49 pm

Definite kudos to supportive bosses! Hope the rheumatologist can help you out. FWIW, I wasn't taking an anti-inflammatory at the same time, but I didn't get any relief for my lupus like symptoms until I went on about 30 mg of prednisone for three months and then ramped down to none. Isn't it interesting how many "symptoms" you have when you look at their check list. I was another cold sore person that my GP said I got due to stress. Turns out she was wrong :)
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Re : Second round of BW

Postby ladybug76135 » Mon Mar 01, 2010 08:17 pm

Yeah for bosses that understand!!!! It sucks that you still don't have any definitive answers. At least you know you're not crazy and imagining your symptoms. Keep us posted.

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Re : Second round of BW

Postby tree » Wed Mar 03, 2010 11:44 pm

I hope you get some answers and feel better soon. The bloodwork/drugs/still feeling terrible cycle gets really tiring. Good luck with the Rheumy.
I am running in a similar circle, and it is frustrating. It always seems like getting the explanation for PE will be worth it, and I hope you get that.
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