I know, I know... have not been posting in about a week or so. My days just run together.
Remember when I posted about my hubby sleeping and his breathing and all? Well... he went to the lung Dr some time last week, and then the next day had a broncoscopy done. They found secretions in his lungs, they took samples and he finds out Tuesday what they have to say about it. They put him on Advair inhaler and another inhaler, and since then he has been breathing well at night. No more of him shaking the bed because he is not breathing right. And he has not been snoring either. They do not think he has COPD like 1st Dr thought. They do not think he has sleep apnea either. They think it is some form of asthma. Since he started his inhalers, he has been sleeping better and not as fatigued as he was being. I guess because he is getting more oxygen now.
I LOVE Remicade! It REALLY does wonders for me! I mean I do not even notice it is time for my next dose of prednisone. But I take my pred anyways. I wish I could come off the pred already.
I have been doing REALLY GOOD! GREAT! EXCEPTIALLY WELL! Since I got my last infusion. I have had little to no swelling, not much pain in the old joints, and joints are much more functional! I think I am doing so well this time around is because I done 2 of those 21 day prednisone tapers back to back and when I went for my infusion I already had little to no swelling, so the Remicade did not have to do so much for the swelling as most of it was gone already. That is what I think anyways. I really have noticed a difference this last infusion about how it does to keep my swelling at bay.
I guess most of my pain comes from the swelling. Little to no swelling and very little to no pain. I do still have pain... mostly feels like bone on bone rubbing, but I'll take that over the other pain any day.
Like I said much more functional. Still afraid to do things for fear of over-doing and I just want to ENJOY doing so well before I go off and do things. PLUS, I am still having problems with fibro and pinched nerves. SO... even though RA seems to be under control, I still have other conditions to worry about.
I must admit... that I have noticed I seem to be fatigued since my infusion. It is like I have no gumption and just feel blah and tired all the time. But my mind is very active, it thinks of things for me to do, but I just decide I am not going to do them for fear of over doing, and wanting to stay doing as well as I have been doing since my infusion.
I can make complete closed fist on both hands! My knees hardly swelled! My jaw, I can open my mouth wide enough to fit a spoon in all the way, no more slurpping food off the spoon. My back hardly hurts like it was. I can extend my arms out more and reach things in the cabinets! And many other things I was not able to do. Heck... I do not even need help getting out of chairs or off couches, and no more rocking back and forth to get to a standing position when sitting! I actually walk "normal" and at a fairly good pace and best of all I can keep up with hubby again!
I am just not sure if it is the Remicade that is causing me to feel fatigued and light headed or if I have something else going on. You know a couple of weeks back I had insomnia, but probably from that high dose of pred I was on. My days and nights are mixed up again, but I STILL have to make myself go to sleep, other wise I will sit up for a couple of days.
The new fibro med I am on, well... it makes me have vivid dreams and dream weird stuff, but it knocks me out. It seems to do squat for my twitching I have. The Nortriptyline helped with the twitching I had/have. The twitching is really annoying, to say the least. I am starting to get use to all the twitching. The twitching I was having of my right eye brow has not been doing as much, so maybe the new fibro med is working? I just starting take a whole tablet of the new fibro med, and that is about the same time the right eye brow stopped twitching so much. My neck is still bothering me. It is do to fibro so I am told. I think it is fibro too. I have not been taking my muscle relaxers 3 times a day like the neurologist told me to. I just cannot get myself to remember to take it thru the day.
I have another appt with my RD some time this month. They rescheduled it because she was going to be out of town. So... I need to call to see when that appt is, I did not write it down as I was in bed asleep when they called to reschedule it. But maybe then I can talk her into getting me off the pred.
Well... if you read all of this and made it this far. Thanks for reading it all! Thanks for caring!Hi Joonie - Glad to hear that remicade is working for you. It must feel good to have some range of motion back and no more slurping. While you still have other issues, it's great that there may be progress in at least one condition. Hope the tests come out fine on Tuesday for your husband.
Take care
Cathy
So glad to hear that you're doing well!!
Better living through (bio)chemistry!!!
Hey Joonie
I was so glad to see your (very long
I am so glad you are feeling pretty good right now and sure hope it continues for you.
I hope you hubby it okay
I had a med that was given to me for fibro that gave me not just vivid dreams but vivid nightmares
Hope you have a good weekend! Oh, and I am famous for forgetting when apts are
Have the kids figured out what they are going to be for Halloween this year?
LaWTG JOONIE!!
It's so good to hear about someone doing well. I wish you many more great days!!
take care
HI Joons, so happy for you, please pray that I have the same response to Rituximab! Great to read all your news, love Janie.XX
That's interesting about your husbands asthma. I developed RA 4 months after BF developed asthma. I wonder how common it is for the two conditions to be prevalent in households.
I'm glad the Remicade is working so well for you.can you tell me what new fibro medicine you are on. I was on lyrica but it was not working well for me. Hi Joonie,
Glad to hear you are doing so well. I haven't been online for a few months and have missed ya. Remicade worked really well for me as well, before I became allergic.
I hope the kids are doing good.
Crispy
Edit: The baby is my little granddaughter. She just turned one yesterday.
crispy2008-10-13 10:46:31Hey Joonie
What FM med did they give you? I'm not looking to switch meds, but I'm curious.
Glad your feeling better!
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