Day after IVIG hip pain......ouch!!!!
 

Hi All,
Has anyone had severe hip/joint pain after the IVIG infusion? I started getting the pain in my hip late last night and today it's very painful. I read thru the info the infusion center gave me and hip pain was first on the list of side effects. :( I called my dr. and he said to start taking an anti inflammatory and hopefully that'll help. If it continues to happen then I have to have less of the dosage of the infusion. So I started taking an anti inflammatory I use for the arthritis in my knee when it flares up......so hopefully this rotten pain will go away soon. Roxie

I'm wonderin
 

Roxie,
Could it be possible that you were maybe in one position too long yesterday?

Billye

Roxie
 

I did what Billye said and my neck is hurting. Just in case go away ROTTON
pain,you leave Roxie alone, now there feel better. All kidding aside i
sure hope you feel better soon. i've been doing the ice on for 20 mins.
then heat. I sure miss my son the massage ther. Gook luck honey and
feel better..:( Sue

It is pretty hard to correlate the pain to the infusion, but consider this...you had to sit for over 4 hours. You may have felt comfortable at the time, but it might have caused you a bit of discomfort today...just like riding in a car for a while, you know?

The other option is it might be IVIG working in an inflammed area.

The only thing I ever felt after IVIG was better vision and less dizzy. I would love to have another course of it now, as my pain level is much higher now and very much more specific, so it would be great to see if it worked...I don't think I am likely to get them to do that 'experiment' with me right now.

We will see what the re-examination of my labial gland biopsy yields as well as a few other biopsies I am having done.

Hope you feel better soon.

HI Sue and Billye and Cyclelops,
My Rheumatologist seemed to think the pain is from the IVIG, and the first thing listed on the side effects sheet is hip pain/joint pain......but it could be front sitting too long also. I just know it hurts and I'm ready to be done with it!!!
Hopefully Sue's shooing it away will help :) Thank Sue!
Sue are you under water there? We have LOTS Of water in our yard. We just had to lower the garage door so water wouldn't come in that way cause it was pretty high in the drive. The rain stopped about an hr ago so hopefully the water will resede soon. My husband is on the other side of Houston at work......and has to head home in 5 min......I sure hope he doesn't get in the flood water!! Roxie

Yes, sitting too long does affect...
 

things! I only realized this when at the hospital infusion center, mainly because it'd take 1-3 hours from arrival, setting up the IV line, getting blood drawn, and after hour 1-3, starting the infusion... It could be up to 7-8 hours of sitting! Think about it, no matter how much I hurt, I realized that I must be getting up, going to the kitchen for something, doing dishes, going to the bath for stuff.. I'd be getting up/down at least 3-10 times an hour..Sitting STILL for a whole day, well I never was that still at any office job! IF you can, see if you can unplug that pump on the pole [it should have a battery charge] and take a short walk up and down the hall or around as best you can to keep things circulating - if you aren't flat out asleep, that is. It really helps and also keeps your feet from swelling.
Hang in there, truly - Stay dry in the meantime! - j

HI J!
Yes it was the pits having to sit that long. I arrived at 9:45......by the time we got the paperwork done and got the IV in it was 10:45 and then I was there till 3:40 by the time they did the flush on the IV. It was such a long day! I wish the Benedryl would make me sleepy, but it didn't, at all. I only got up a cpl times to use the ladies room.....next time I'll walk more! I'm taking my headphones and a good book to read......I only took magazines before. Hope you have a good evening! Roxie

I hope your pain goes away soon, after just having a hip replacement not to long ago, i found that beforehand, that sitting for to long in one spot use to aggravate to hell out of my hip, walking around a bit does help a lot.

Hi Roxie:

Just wanted to say hi, and send a hug. You're doing great.

:hug: Melody

I'm sorry your in pain. I agree hold to hope that this in the long run will help. Can you take a bath? Or a heating pad or maybe cold? I have no idea but for my leg/foot pain I go back and forth. Cold water soak then warm. It sometimes help. Take care

HI All,
My hip is feeling better this afternoon, finally! I did soak in a warm tub a few times, that felt good and also sat on an ice pack a few times.
I've been SO tired since the IVIG! I've slept more in the past few days than I have in the last week! lol I guess that's just the infusion.
We haven't had rain all day and now we can hear thunder AGAIN! We don't need any more rain here in Houston.....but I think it's coming anyway!!!!
Hope everyone is having a good weekend! Roxie

Great stuff Roxie, glad to read your doing ok now, have a good weekend :)

Roxie, yes being tired...
 

comes with the territory sometimes...I always blame it on the whole infusion process: 1] all those extra 'filtered' pedigreed anti-bodies going to work on my entire system...working to fight my own warped immune system into shape and repair any damages; 2] the pre-meds, as one can get a re-bound effect from such direct administration [not to mention quantity] IV; and 3] that whole process of going through a whole new process!
Do you feel any changes, other than those for the worse? Don't be afraid if things start to feel just plain 'different' from day to day, hour to hour. If they feel worse in any definite way, call your doc's office or service-they do get back to you.
I don't want you to feel discouraged if you don't feel anything better,only worse, but not terribly worse-right away. That's why the docs try it out for 3-6 months at first to see how well you can tolerate it and then as time goes on if you notice any differences. The folks who have the horror-tale reactions, usually get them from the get go, for others nothing happens after 6 months the doc will stop infusions....But If I recall correctly, [I should recheck statistics -but I doubt they've been updated] it works for about 60% of the folks who try it...It won't be an 'imaginary issue' either, it'll show up in your blood work.
So, sleep well, and have some dreams - I don't know about you, but sometimes -maybe it's all the meds, but dreams seem to be in short supply [the sleep kind of dreams- I still have the awake kinds!]
:hug: 's - j

HI J and Brian,
Well so far I'm just feeling tired. Tonight my hip feels much better, so I'll take the anti inflammatory tomorrow and then stop because they are really bad for my esophagus. Hopefully I won't have the hip pain after this next infusion....on Thurs.
I hope my energy returns because I have a Mamogram Tues. morning......going to a new Pain Managment dr. Tues afteroon......going to the Chiropractor and Massage therapist Wed....and then the infusion on Thurs........Maybe I'll sleep thru it this time! That would sure be nice! LOL
I do hope I'm one of the 60% who has good results from the infusion because in Jan. my insurance is renewed. So in Jan. I'll have to start paying the copays and coinsurance costs and I can't afford that.
Anyway, My husband is home now for 2 days so we have errands to run and things to do......so I won't have as much time to nap. Take care......Roxie

Hi Brian, Was it you who told me about the Fentanyl patch?
I saw the new pain management dr. today and he has lowered my Lyrica down to just 2 pills at night......and then I'm going to start using the Fentanyl patch to try to control the pain. He said that the patch comes off easy if you sweat.......well I live in Houston......it's 100 degrees down here now.......so every body sweats! I'm wondering if using one of those wrap tapes that Lab. people wrap around your arm after blood is drawn would help keep those patches in place? What do y'all think?? I don't want to have a problem with them not sticking because I'm outside a lot......even in the real hot weather. Thanks all!

Hi Roxie:

There is a special tape that goes over the patch. Alan got it from Johnson and Johnson. I forget what it's called but it comes in a box with about 50 tape things. It's a nice size thing that you peel it off and you place it right over the patch. Never came off and Alan showered every day with it.

Hopefully someone on these boards will remember the name of what I'm talking about. If not, I'm sure if you call the people who make the patches they will know what I'm talking about. There's an 800 number on the fentanyl patch box so you can call for information.

All the best,

Melody

HI Mel!
Thanks so much for that info about the patches that goes over the other patch. I was worried how I was going to keep the dang things on in this heat! I'll look into those tho.......Thank you!!! Roxie

Possibly Dermacil
 

Mel,
I'm using Dermacil tape over my patches for the lidocaine ones. It will go thru the shower. I think Dan P uses green duct tape on his. I'm not sure what you are talking about.
Billye

Roxie do you mean
 

the tape they use to keep the IV lines IN you and then bandage the gauze onto you after they take the catheter out? That stuff is [according to each and every single IV nurse I've met] considered PURE GOLD! That's why the rolls of it come so small.
Or do you mean that beige colored roll of self stick bandage wrap stuff?
The first I've no clue where to get it - the second, I know where you get in in bunches and in colors and 'patterns', sort of. If the second, I'll give you a few sites to get it. - j

HI J and Billye,
The tape they use at the Infusion center is for after they remove the iv and then they put this brown colored wrap around your arm to hold the cotton ball in place over the iv spot. It only sticks to itself, not to your skin. If that is the expensive stuff then I'll have to look for something else to use to hold the patches on. Where do you get that wrap that comes in different colors etc?? That sounds good if it's not real expensive since the patches you have to change every 3 days. Thanks!

The tape I use is Transpore - made by 3M - which I buy from my local hospital Medical Products outlet. The tape is 2" wide and is semi-clear whitish in color. Comes several rolls to a box and it's been so long since I've bought some I've forgotten the price. Does a pretty good job.
Oh, Billye - nope...have never used green (or any other color) duct tape. LoL
DanP

HI Dan!
Thanks for that info. I'll check it out!

Sorry Dan
 

I'd swear someone was using duct tape for the patches. It's been awhile since I read that but I remember at the time that there was no way I'd put that stuff on my skin.

Billye

LOL LOL Love that monkey picture Dan! LOL LOL

Roxie, that is the same stuff that we use on horses. It's called VetWrap and can be bought at farm stores or tack shops. The only difference between that and the stuff the dr office uses is the vetwrap is wider. I haven't bought any for a while, but I paid $3.99/roll this spring.

HI! Thanks! I'll look for it this weekend. I'm having a hard time finding a pharmacy that can fill the fenantyl patches! I've been calling around trying to find someone who has them in stock.

Hi Billye:

Alan never had to put anything over the lidoderm (lidocaine) patches. Those things were big but they stayed where you put them.

Now the little fentanyl patch, well, Alan was afraid they would come off in the shower so I got in touch with the people who made the fentanyl and they sent us the clear thing, that comes in it's own wrapper. Kind of like a big square bandaid. You take it out of the wrapper, and you peel one side off. Let me tell you, I went through so many of these things, because when you first open it up, you do not know how to use this thing. It unfurls from one side, then you peel it from another side, then you stick it over the fentanyl patch. I will never forget this. But Johnson and Johnson did make this. I will have to look up the name of this item.

Will get back.

Melody

P.S. I'd be afraid to use duct tape too

I believe Melody
 

that the cover was Tegaderm.

One trick to applying patches is to clean the area well with alcohol.
Then blow dry it dry. Use Isopropyl. Alot of sticking issues have to do with
skin oils. Also hold the patch in place for a minute or two with pressure.
This helps as well. If they still won't stick...Tegaderm is the next option.

J&J used to send out covers for Duragesic...but I don't think that service
is available for the generic ones.

Tegaderm is very strong...and may damage sensitive skin, so be careful removing it if you use it.

Hi Mrs. D.

I have never heard of the word Tegaderm. So I can definitely tell you that was not the name of the cover thing that we got from Janssen Pharmaceuticals (the people who made the Duragesic Fentanyl pain patch). Alan was on their patient assistance program 5 years ago. Thank god for those people because his pain level was through the roof. And the day I rubbed the capsaicin creme on his toe, well forget it, I thought he would have a stroke. I probably should not have done what I did, but he was on 50 of the fentanyl and the only thing I could think to do was take a 25 patch and stick it next to the 50 patch. That put him on 75 of the fentanyl. Then I rubbed off the creme and applied ice.

That was a rough 1 hour experience at 1 a.m. I'll never forget it!!!

I have got to remember what the heck the name of those covers were.


UPDATE.....FOUND IT.

They are called: "Johnson & Johnson bioclusive wound management adhesive covers"


Melody

Thanks Mel! I'll look for those too.......Isn't it crazy that you have to buy a product to keep that patch on? I use the Oxytrol patch and the Climara patch and don't have any problem keeping them on. They are very sticky and stay on for a week at a time.

Actually, Alan never had a patch come off. He was just afraid it would come off so they sent us the Bioclusive things. Very hard to use one. Believe me, the first time I tried to cover Alan's fenatnyl, I must have used 3 of these things. They open up in a different way, when you peel them. Drove me nuts.

Oh, (and this applies to men), they should not shave the area they are putting the patch on. They should cut the hairs. If they shave the area, they are taking off the top layer of skin, and if they put the fentanyl patch directly on this area, it increases the delivery of the fentanyl.

I never forgot that. So Alan would just cut the hairs on the top part of his chest when he would put the patch on. And he couldn't put it on the same place consecutively. He would have to vary the locations.

Very interesting, this fentanyl patch. Alan went up to 100 of the patch, when he found Dr. Theirl.

So his primary at the time, did the lowering, gradually, of the fentanyl. He got down to 25 of the patch, and could not go off of it. He had to go into detox. But because they did not have the right test to give him that would test for fentanyl, they released him saying "you are not on drugs, it's not in your system". He could not believe it. He was there for 24 hours. When he came home, I was stunned. I said "what happened"? and he said to me "they say I am not on drugs so I don't have to detox". What a screwed up detox place this was.

Alan had to detox himself in our bedroom for 5 days to get off the 25.

It's like a really bad flu. But he did it.

But when he needed the patch, it really did work for him. And after a while, he took vicodin for breakthrough pain.

Wish you the best hon!!

Melody