Quick question on pain..

[Birdie]

This seems to be my go to place when I get overwhelmed reading all the stuff on the Internet.

Always keep in mind that what you read from medical sources has been lawyer'd into the dirt. Here you can see for yourself how actual patients have handled... uhm... well... whatever you need to know about.

[debra]

Joni, I forgot, about the studies Birdie is referring to. Pay no attention to these! According to these studies, I'm not here anymore... My time was up, because I'm not yet treated... So ya, take it all with a grain of salt.... Deb.

[JenG]

My son went to hospital ER tonight with severe pain in left leg. I don't know how to post pictures, but he has a rash on his leg , which is new. Dr's. on call has given him 2doses of pain meds that hasn't helped much. He starts infusion of chemo on Monday to try to get this GPA under control. He has been on Cytoxin which he wasn't responding too. Can anyone help answer my questions.. I'm his Mom and I'm trying to understand this damn disease.. Is the rash from Wegeners? Is pain associated with this?

Hi Joni,
I have had a red, hot painful rash on my lower legs and feet with swelling so bad that I couldn't walk. I believe this to be erythema nodosum. My was biopsied and also named panniculitis (an inflammation of fat cells below the skin). Mine was associated with a flare of Wegener's that was initially treated with high doses of prednisone which took care of my swelling and rash. I went through this in October 2014 and still have residual "stains" on my legs that look like bruising but are just what I consider as war wounds. I forgot how painful this had been until I read your post! I did not take any pain medication but did use crutches as it was so painful to walk.
I hope your son is able to find relief--not only in pain meds covering up his symptoms--but through actual treatment. The rituxan infusion takes a while to kick in and take effect, he may need a higher dose of prednisone while he is waiting for its full effect.

to answer your other questions, I would think the infusion center would permit visitors, mine always does. As for reactions to the infusion, he is being infused at a center well prepared to deal with reactions. They should premedicate him with tylonol, benedryl and a high steroid dose. I tend to have many drug allergies and did have a minor reaction to the infusion. I was able to catch it--my throat and windpipe started itching, heart racing, etc. The nurses stopped the infusion, ran more benedryl and a saline flush until I felt better. They restarted the infusion at a lower rate and I was fine. I have had several infusions since and seem to be doing much better. just encourage him to speak up if he feels anything different/funny during the infusion. My understanding is that most patients tolerate the treatment without any complications (again, let me remind you that I tend to be very allergic to meds).

good luck, keep asking questions and keep reading!!!
jen

[MikeG-2012]

I have been (many times) to six different infusion centers and they were all terrific. One was individual little spaces with privacy curtains, the others were big open rooms. A friend drove my wife one time and brought one of the parrots, thinking he would wait outside in a park, they invited her (the bird) to come in and hang out. She played with the patients for several hours.

I used to have a Golden Retriever who was a therapy dog. But, I've never heard of a THERAPY BIRD! Very Interesting!

[Birdie]

I used to have a Golden Retriever who was a therapy dog. But, I've never heard of a THERAPY BIRD! Very Interesting!

Hey, on topic for this thread, in a way... no doubt that pain becomes unbearable at some point. That pain threshold can be varied by distractions like a friendly critter entertaining you. Two of the birds I know are registered with a group called Paws to Read, they volunteer at the library on saturdays, helping kids learn to read.

[debra]

Birdie, hell there, once again... This is amazing... Animals rock... People? Some.... Deb.

[debra]

Oh no! No its hello! I'm so sorry!!!!

[sbryan1]

Joni, yes with all GPA medications like Rituxin, it can lower your immune system but it shouldn't disrupt your life. I personally use a lot more hand sanitizer (it's in all my cars, and my purse) and use it often. You get into a habit of wiping down grocery carts and the like. I don't go out of my way to shake hands or hug strangers, or even open doors, however sometimes it's unavoidable. Just keep the Purell handy. Secondly I do not go out of my way to stay isolated from others. I just do my best to keep a reasonable distance in a coughing sneezing crowd or keep the grandkids from kissing me if they're sick. I have not been sick in the last year! My doctor told me that washing your hands often and using reasonable cold flu hygiene is enough and it has proven good for me.

As someone said to me when I was first diagnosed, "Continue to live your life and don't sweat the small stuff, you'll go crazy!" I was terrified of getting sick at first and with these minor changes all of a sudden it became routine and I no longer think about getting sick. Tell your son to hang in there.

Sbryan1
dx 12/14

[Joni]

Good evening Forum Family. I have an update on my son, Kyle, first Rituxin infusion.. He had only 1 reaction and it was early into infusion.. 1hour. His head started getting red and itching horribly. They stopped infusion gave more Benadryl, waited 30-45 minutes and started slowly again.. No reaction this time and 6 hours later he was finished. Scheduled next appt. for 2weeks from now then in 6 months 2 more.. I talked to him this evening and he was tired and sore. Thanks to you all for your knowledge and support.. It feels so great to have your wisdom on my side so I feel like I do know what to expect.. On a great note to end this with, my sons rheumatoid Dr gave him a 10,000.00 credit card to help pay for any upcoming infusions that his insurance does not cover! We are breathing again in Kansas!

[debra]

Joni, wow... So awesome! I'm happy for you and you're son.... Joni, I hope you continue to hang out... Best of luck... Deb.