Had my RD visit today | Arthritis Information

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Welp got a new DX... Restless leg syndrome. She said that is what is probably making my legs jerk at night, the feeling like they fell asleep, and the need to move my legs. She said or it could be a combination of RLS & Fibro.

 
She asked about what my neurologist said about the possible TIA. I had to explain to her how my insurance got messed up and now I have to get it straightened out. and how my neurologist will not see me until I owe him no money. She is still if-y about the Remicade and does not want to raise my dosage, but she is going to. So my next Remicade infusion on the 30th I should be getting 400mg. She really wants to switch me to another biologic.
 
She RXed me Lyrica... for fibro and to see if that helps with the RLS. Let's hope my insurance will approve the PA for Lyrica. They probably will not, but let's hope they do!
 
We both decided that the Imuran is not doing a very good job. So... I told her I was willing to give MTX another try. She is starting me at 2.5mg and then we are going to see how that works out for me. She did not like how I got cold and then hot when I was on it the last time, but that was at 7.5mg.
 
This time the little Remicade stamped figure only had 4 joints circled and she said that was the best one yet. She was really pleased, but said I should not have as much inflammtion in those areas as I did today. She said a little inflammation was ok, but I still had more than she liked to see.
 
She gave me Darvocet for break-thru pain. She did not want to give me anything else, as she did not want me to get addicted. I asked what I was to do if that did not work, because she told me to take it once, and she said to just call in and she would RX me something a little stronger for when and if I flare bad like I had been. I said fine with me!
 
I told her I had not been taking many of my Ultrams since my infusion. I only took maybe 2 a day when I would flare just a little when it was storming after I got my infusion. She said that was really good. She was happy the Remicade helped with my pain.
 
Oh and she mentioned taking MRIs of my hands again LOL! She has been talking about that since I began seeing her
 
I did not mention anything about being depressed, because quite frankly... I do not feel depressed now. I actually feel pretty good, mentally. It was just the pain I was experiencing that was messing with me.
 
She RXed me another med, but I cannot remember what it is.
 
Oh and she said my insomnia was caused by the fibro. So... she said if we can get the fibro under control a little better, I should not have insomnia that much anymore. Which would be nice.
 
Well, I guess that is all.
Sounds like a pretty good visit! Glad to hear it! It should have been a good visit... My appt was at 3:30 I got called back at 4:40 and did not leave until 5:56! It was just me, my RD & the clean up lady
 
My hubby & son were out in the car snoozing!Good luck with the increase in your meds. I hope it works well for you.I am glad it went well and that you will get more remicade! But the only time I ever had insomnia was on darvocet. Not a good drug, they may take it off the market soon, maybe she could rx percocet? Seriously google darvocet if u haven't alreadyJoonie, Lyrica has really helped me with neuropathy and leg pain.  For the first several weeks expect some side effects but they'll go away as your body adjusts.  You may be sleepy when you first go on it.  Actually, sounds like a decent appt.  and Katies right, Darvocet may be pulled from the market.  Take care and I'm really happy that you're doing so much better.  LindyDarvocet is a crappy pain reliever - not really any better than just taking acetaminophen (tylenol). Thanks everyone!
 
I hope this fibro can be remedied. And I hope Lyrica gets PAed. I keep have trouble getting most of the "popular" meds my RD RXs not PAed. I am not sure if they are not sending in PAs or they keep getting rejected. I told my RD about it today, and she said they are probably rejecting to authorize them.
 
Did not know that about the darvocet, thanks for telling me! She told me just to take one when the Ultrams do not work. But she told me to take 2 Tylenol arthritis if the Ultrams themselves do not help with my pain, and if I have pain come on after all of that like I was, to take a Darvocet. She only RXed me 15. I am just hoping I will not have a need for anymore than 2-4 Ultrams at most, or none like now. I have pain, but it is not pain med worthy. It is mostly tense muscles and tension pain I have from the fibro. Not much joint pain, and the pain I do have in my joints is easily ignorable.
 
My hubby finally told me how he knows when I am not doing well, or in a lot of pain. He says my face is scrunched up and I move around like a zombie. He said I can go weeks with my face looking like that and it never looking any different until I get my infusion. Then my face goes back to being normal looking. Kinda weird I say.
 
I think I have more productive appointments, if I go when I am doing well. I seem to be able to remember things a little better and am a little more talkative. As compared to when I go for a visit when I am in a flare. Because most times by the time I see her I am hurting worse and just ready to go home.
Joonie,

Sorry to read you have RLS.  I have that too.  It feels like bugs are crawling up the bones in my legs.  It's is frustrating when it happens.  I took Requip for a short time, but found that when I got my iron levels more in the mid-range, the RLS went away - well almost.  It probably creeps back once every six months.

It sounds like you have a great RD.  Very thorough!  I have to admit that the Darvocets weren't very helpful for me.  The Tylenol Arthritis might as well be candy too.  The only thing Tylenol does do for me is bring down a fever if I have one.  It does nothing for pain.

I hope you feel better soon.
Joonie,
 
I sure sounds like you RD is a keeper.  I hope you continue to improve and that the meds make the RLS better I cannot tolerate iron supplements. I have this weird thing about if I eat more than one peanut butter sandwich I will bleach up the iron taste for days. It also will make me feel sick to my stomach. I just cannot tolerate iron for some reason.
 
I have to try to find vitamins with very little iron in them, and that is hard to do. I found on brand one time, but walmart no longer carries it. If I take a supplement with iron in it, I burp the iron up and then I get a wicked headache and not feel very well.
 
I have always been like that about iron since I was a baby. Both of my kids had to be switched off formula that had less iron in it, because they would throw up the formula and not keep it down.
 
I do not think I am anemic. I was tested for that some time last year. And I was having all the same symptoms I am having now with my legs jerking, twitching and "falling asleep".
 
It is just that normally when my legs do that, I have a lot of inflammation going on, and I know I do not have that much inflammation going on now, so it should have went away. But it has not this time around.
 
 
When pregnant, I couldn't keep down the pre-natal vitamens.  Dr. said it was due to the iron.  Instead, I took the Flinstone's chewables with iron.  They didn't cause an issue.Yeah... it was one of the pre-natal vitamins that I was taking that did not give me the iron issue, but our walmart does not carry it anymore. I am not even sure what the name of the brand was. I just knew it when I saw it LOL!
 
Joonie, there are LOTS of multivitamins available without iron - at Walgreens, Walmart, Kmart, you name it.  Just got to dig around a bit.  If I take a multivitamin, it's always the one without iron.
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