I took my Humira last Friday, and it lasted maybe 3 days. That was the first injection in 2 months, and my last injection I had. I got a check this month, as last month I did not get one, so now I can pay Caremark and get another months supply.
Anyways... I am down to 5mg of pred and that is what I am running off of, that and my 800mg of IBU and some Flexaril my mom gave me.
I have been having problems with my neck/back/shoulders thing again. I cannot turn my head to any side. I also get this really annoying stabbing, throbbing pain in my collar bone that comes from my shoulder, thru my neck and stops in my collarbone and then OH the pain! Oh and when I finally work the stiffness out of my neck, and I can hear like fluid swishing around in there. I also have been getting hubby to get my back to crack by pushing down on it, because my back feels like it needs to be popped, plus when my back hurts my ribs start to hurt too. When he does pop it it feels so much better and my ribs do not hurt anymore.
I also have been having a lot more problems out of my right knee. I have been having a lot of twitches that go from my knee up mid-way of my thigh, and it also goes from my neck down to my calf. It just twitches, or spasms. I am not sure. The twitches have also been in my fingers too. I think it is from the increased inflammation all the twitching or spasms. I have been woke up by my right leg jerking, as well.
One day my right knee is mushy swelled and my knee will not bend all the way out, then the next day my knee is a hard swell and is painful and hard to walk on and is stuck in one position. Trying to get it out of that one position is a real B!tch, so I do not even attempt it when I have a hard swell.
My fingers... OMG! They are swelling again. I think the 10mg of pred was keeping them from swelling. At night is the worst, they are really hot, and get stiff really really easily, and I can actually feel them swelling!
I hope the Humira works like it is did for me before. If not I am so SOL and I do not want to be SOL.
Sounds like the RA is way out of control and you might want to call your RD. I don't know if he will up the pred again or not, but you should do something so you are not miserable. It takes time for the Humira to catch up. I am still playing catch up from missing 6 weeks of it. I am doing and feeling better, but not what I was before I got sick. It just takes time. RA is definitely an exercise in patience.I agree call your doc and also ask to see a Neurologist. Be sure you tell him what you told us here.
Is the side of your neck that bothers you the same as the one that they did surgery on? That fluid in your neck thing just sound bizarre. You have to get this checked out.
I know. I know. You hate going to the doctors. But please do so.
No, it is not on the same side they done surgery on; I have always had this fluid swishing around in my neck problem since I was 9 years old. I have told every RD I have ever had and some GP's about the fluid swishing sound in my neck since I was 15 and none of them have addressed it. I also have yet another "lump" on the right side of my neck again. I had those "lumps" on the right side of my neck off and on since I was a kid, but it has been awhile since I have had one, which now I have one. The neck/back/shoulders thing is new though.
My feet hurt so bad and do the snap/crackle/pop and like to swell after I have been on them for a while, longer than 15mins tops. I just hate going to Freak-Mart now, I am always looking for somewhere to sit.
Oh and my right hip is just a pain in the butt! First time I have had just one side of my hips to hurt. It hurts while sitting, laying, standing, but more when I am laying on my right side and sitting down. While standing it does not seem to hurt as bad as my feet, so you can say the feet pain makes me overlook the hip pain and then the back/shoulders/neck pain makes me over look all other pain and I just focus in on that hurting, as that pain is much more great for me to deal with all at one time.
I have been so grouchy, and using the F word alot to hubby. I normally do not use that word, but lately it is my new favorite word to use and it just comes out without me thinking of saying it, it is like involuntery. I used that word alot when I was preggo with son too.
I so do not want my RD to up my pred again. At 10mg it did not feel like it done anymore than the 5mg I am on now. I cannot really tell a difference between being on 5mg compared to the 10mg, except that the 10mg seemed to last a little longer before my next dose. I think if the Humira does not work for me after the next couple of weeks, I will let him know. Or maybe I can call and tell him I am in a flare and need a dose pak.
Aaaaaaaaaaaah.... Life with RA SUCKs Big monkey nutz!
Sounds like time for a dose pack. The sooner the better. You know by being a tough cookie and tolerating big inflammation like this - we let the joint destruction continue.
I hate to call RD too. I hate to go there to see him even more. Do it anyway Joonie, my friend, 1st thing Monday morning.
Gentle hugs Marian- and butt kicking to make call.
Humira worked for me for over a year and then I started to slip. My RD explained that our immune systems tend to adapt and change. He said periodic changes in treatment is to be expected. I started on Orencia infusions and this has been working well since August. Also, set up a "flare plan" with you doc. I have extra prednisone to use in a burst when I flare. I go from 5mg up to 20 and sometimes 40mg for a few days and tapper off. When it comes to any lump---my family doc told me to come in when they appear to get a sample of the fluid taken. He said the sample of fluid can tell them what is causing the lump (RA or not). Good luck---don't suffer--get control of the inflamation and stay on top of it with prednisone! I know the side effects are bad, but for me the trade off is walk---or get puffy. I can handle puffy and a few pounds.
K-Lynn
Oh... I do not have a problem taking prednisone... I am one of the few who LOVE it. I just hate dealing with my RD. He is old and forgetful, and I had to make sure my medicaid was back into effect before something. Which it has been reinstated. I will probably call tomorrow, I have other stuff I have to get done from them too.
Today seems to be a little better, but probably because no rain! YAY!!
Joonie,
Could you have a dissection (a tear in the lining of the carotid artery)? A friend of mine had that and she said she heard a whoosh whoosh right behind her ear in her neck. Her pupils also were differently sized.
Anyone can get them. I think they can be serious, but my friends wasn't a big deal for some reason.
Jennifer
The fluid swishing sound is in the back of my neck. You know when you get stiff and then when you get it worked out and able to move again you can hear the fluid moving around? Or am I the only one who can hear the fluid moving around?
I have told all of my RD's and GP's about the neck problem and they took x-rays and one said I had bone spurs, but I do not think she understood where I was talking about.
Yes, the fluid thing sounds odd. You couldn't find that with an xray anyway. It would be an indicator of soft tissue, something you can't find with a xray, you'd have to have an MRI. I do have fluid on my hip. Hurts terribly at times, no swishing. That's a big joint though. Your neck is filled with small joints. Can you possibly convince them of doing a cervical MRI?
It all does sound out of control. Kick the doc awake.
I am not sure if MRI's are an option for me, as I have screws & wires in my elbow now. I have yet to make it back to bone doc to ask if MRI's are still an option for me or not. I think they can still do it. You just have to keep your elbow away from your head. I kept my belly ring in when they did my knee, they said it was far enough away that it didn't matter. I think it's fine.