Reply To: Joint Pains

Thanks!!! I hope so too!! This last IVIG seemed to help already- the burning/sensory syptoms are greatly improved and my hips even better! I got to run with my kiddos in the park the other day without any difficulty- it was AMAZING!!! 🙂 I am SOOO thankful for that! I tolerate the treatments pretty well, unfortuantely I can’t go above 80/hr or I get aseptic meningitis.. ugh.. we tried 100 for only 2 hours and got meningitis from that (not quite as bad as when I was in the hospital, but still not fun and it lasted a good week of misery, plus it seems to make that round of IVIG not work as well). SOOO we have to go slow, which takes FOREVER! I asked my dr about home health or an infusion center closer to home (its an hour and a half drive in the morning with traffic), but haven’t heard back.. its a LONG day! I still get headaches, but no longer get chest pain and the rash that I used to get (the first three treatments I got blisters on my palms and feet and a rash all over my body and pretty good chest pain with the infusions and for about two days after- WIERD)! .. so that’s good! It even helped with my voice this past treatment (i felt like I had a bubble on my vocal cord for a couple of weeks, that I could resolve with clearing my throat for a few seconds), but that was gone after 4 days of this last treatment! 🙂 I tell ya this thing is so wierd!!

Another wierd thing I noticed with this last “relapse” was when the sun would hit my most affected areas of sensory symptoms- it would cause substantial burning and tingling!! it was crazy! The more I use my limbs the worse it gets as well- does this happen to you?

More questions for you- how are your reflexes now? I believe I remember you saying that they were brisk/normal initially? did they stay that way or ever decrease? Did you ever try oral steroids? (I never have) with your rheumatologic issues, did you ever have livedo reticularis? The rheumatologist pointed it out on my trunk- I had noticed I looked a little “purple” compared to my husband and kids in the past year, but never thought much of it.. Anyhow, I was driving in the car yesterday with the sunroof open and the sun hit my thighs for only a few minute (but I was wearing jeans), i was shocked when I got home noticed my thigh had this rash that was BRIGHT red- it did go away within an hour, but it was lacey/web like just like the Livedo rash.. interesting I thought!

Thanks again so much for your help!! How did your treatment go? Do you notice decline or improvement after treatments at this point, or does it all just hold everything steady?