One month is all I get | Arthritis Information

Share
 

So... the last few days... my RA symptoms have been making themselves increasingly well known.

 
Friday night my hands, not my fingers, my hands like in the middle of them were so painful I wrapped them up in a heating pad and fell asleep on my in-laws couch. I had no pain meds with me so... sleep was the best solution.
 
Then Saturday... My left hip was doing the same thing my right hip has been doing for a long time now. AND my hands were hurting. Sleep was the only way to feel better and taking pain meds and muscle relaxers.
 
Also on Saturday... the same time my left hip/leg/toes pain was going on... the left side of my neck the muscle there, was twitching something fierce. I mean it was moving my head to the left, that is how bad the mucsle was contracting and releasing. It was just  a weird feeling all together.
 
This morning... my fingers on both hands are now swollen once again, and very stiff and hard to bend. I am guessing it is because of the decrease in pred, and that the Remicade is wearing off already.
 
The pain is bearable, but I see now that this weening off pred, is not going to be exactly what I was hoping for. Just means increased symptoms and less relief for when the Remicade wears off.
 
I was laying here thinking... someone take the pins outta the voodoo doll already! Fine.  I'll take them out.  Maybe.
 
Well, a month isn't very long, but it's still a month which is better than what you have had in the past.  I wish you could have more, but I'm glad you have at least some time.  It is disappointing to hear that you're sliding back though.
Oh and also...
 
You know that area on your ankle... well not exactly your ankle, but where the achilles tendon is... but off to the side of that just between the achilles tendon and your ankle bone?
 
I have been getting like this pain there... like something has been over stretched. It is not new, persay. I only experienced in the past when the prednisone was not enough to make it good away.
 
Does anyone else get that pain in that area?
Yes, she was talking about changing me, but she also said she thought Remicade was my best option. She said she did not feel the others would work as well for me.
 
If I can just get her to let me have it again every 6 weeks instead of every 8 weeks. I would be ok. I do not even want my dose increased, I want the frequency increased. I am on 300mg. I get 3 vials. I respond well to the 300mg, except it does not last that long.
 
She will not give it to me every 6 weeks because the last time she did well... ya'll know what happened to me and she is scared to increase the frequency again.
 
One good thing... is it did not make me feel fatigued this last infusion like it did the 2 others before it.
 
I also know when it is wearing off too, because I am wanting to sleep again. Started beginning of this week. Plus, my knees have been really warm again, along with my elbows.
 
I am afraid to start something else new, when this is working just fine... except needing the frequency increased just a little.
 
I will know what I am doing with it all on the 17th.
 
 
Oh and my wedding rings are stuck on my fingers. I'm so sorry Joonie!!  I am not nearly as bad off as you but I do get pain on that part of my ankles.  For years and years, I have had trouble with stretching out my achilles, and feeling like I could never get it stretched (this would start when I played soccer).  So I'd try to stretch it more, but that just made it sort of itch/feel crazy.  And that is the same problem I've had with my wrists, on the back.  I remember when I was younger I always felt like I had to stretch out my wrists there.  I have lost ROM in my wrists but I guess so long as I keep walking (and not wearing heels) I shouldn't have any issues with that in my ankles!
 
I wish there was something I could do to make it better for you!  Hang in there...
So sorry to hear the remicade didn't get you relief longer than one month.  I wish you the best.  I also get that pain at my ankles...I actually hate it when it happens.  I use ice on it and it helps with the swelling.  I can empathize with you about the swelling.  My hands, fingers and ankles are totally swelled up.  Today is my day for the enbrel shot and that usually helps it.  Good luck to you Joonie, feel better soon.  Hiking_galwell Joonie if you can't increase the dose or the frequency and you don't get 8 weeks free of active inflammation you need to do something else.  That would either switch to rituxan or orencia or add something besides prednisone to the remicade.    What is your rheumatologists backup plan?Increasing the frequency seems like the ticket.  I hope you can convice your doc.  Hang in there.You are tapering prednisone too correct? Maybe you are feeling the effects of the taper and it has to level off?
Hope you feel better!

http://www.fotosearch.com/bigcomp.asp?path=PDS/PDS134/200377068-001.jpg

 

Joonie...Found the doll....I'll take the pins out for you!

Hang in there girl, sounds like you are going to have to make adjustments in your treatment. I don't know much about all the ins and outs of the different meds, but I am learning....and I can certainly remove those darn pins..

Joonie, I have a nodule like lump in nearly the same place on my left ankle.  It hurts BIG time.  I'm going to be starting Remicade again on tuesday afternoon.  The dose I got the first time around was the same that you get now, but it will be double to six vials this time around.  My doc said it can be moved to six weeks between infusions but no sooner.  I hope it works a little better this time as I really want to taper down on the pred. 
Bob[QUOTE=bob_h76]Joonie, I have a nodule like lump in nearly the same place on my left ankle.  It hurts BIG time.  I'm going to be starting Remicade again on tuesday afternoon.  The dose I got the first time around was the same that you get now, but it will be double to six vials this time around.  My doc said it can be moved to six weeks between infusions but no sooner.  I hope it works a little better this time as I really want to taper down on the pred. 
Bob[/QUOTE]
 
 
Bob - I hope it works for you this go around. Will you have to do loading doses again? I know what you mean about the tapering the pred. I am doing that now as well. I am down to 8mg from 10mg. I just started the 8mg last week.
 
I have had a couple of infusions that did not feel like they were helping me much and then I have had infusions that made me feel really hopeful, like my last infusion. I wonder why that would happen?
 
Please let us know how it goes, Bob. I am rooting for the Remicade to work its wonders on you this time around.
Hahaa... I am telling you ... it felt like I was a voodoo doll LOL! I mean it was body parts that had not hurt like that in awhile and then the left hip/leg/toes crap was just like how my right hip/leg/thigh/toes crap is, but not as bad, but enough for me to stay home and sleep it off and not eat the whole day and take pain meds.
 
Buckeye - I do not think my RD has a backup plan. I have thrown her for a loop. She is being very cautious with me, because she is not sure why I would have the BP, rapid pulse and that thing that mimiced a TIA. None of the drs I have been to can find a reason for any of it. They are just giving me meds hoping that they will fix what is wrong. And since my Fibrinogen Antibodies were more than double the normal, which means stroke or can mean inflammatory disease (RA). She is not sure what way to go. And no one can say for sure if I did or did not have a TIA, my GP says yes, tests say no. But I have bloodwork that is consistant with TIA. So... I do not know. She does not know. No one knows or is willing to figure it out.
 
So... I will talk with her more about all of it on the 17th. I am willing to stay on the Remicade, because it does help me that much. I am not scared of it causing me more problems. But I am guessing she is. Understandable. She is not to cause harm, but help "heal" me.

Copyright ArthritisInsight.com