Nausea, bone pain-steroids?

Hi everyone, hope all is well for you. I have had a really bad weekend and am slowly recovering. I had low abs neuts and had a Neulasta shot (same as Neupogen, but long lasting) and an Aranesp for low Hemoglobin on Saturday Morning. I have been so sick, I have horrible headaches, bone pain (I can feel the bone marrow bx all over again), nausea, agitation, NO sleep for three days. I could keep nothing down. Of course, no energy to do much about it this weekend anyway.

Finally Monday came and I called the docs. Housekeeper bought some Ensure, since I hadn't eaten in three days, or up chucked it. I have been drinking lots of water, sometimes it stays down. I have no warning when I am going to vomit. It just comes!

Anyway, Hemotologist says the Neulasta is causing the bone pain, headaches, but the interferon is causing the rest. He is prescribing steriods for 4 days. After the hell I have been going through, I hate taking another drug without knowing what it will do to me. Anyone have experience with steriods for bone pain?

Also anyone have a suggestion about nausea meds?  Since I have no clue when I will hurl, I really don't want to take something all the time. The pain meds come up, so I can't get rid of the headache.

Does anyone have these effects with Neupogen? If the sx are so bad with this Neulasta, but not with Neupogen, perhaps Hemo will give me that instead.

Thanks,
Linda

[FlGuy]

Although it's difficult to tell what med causes what sx, I had a similar experience with Neulasta.  I had been given neupogen before and since, the Neulasta and did not have the same effects and bone pain (mostly in the legs)as with neulasta. I un-scientifically decided that it was the pegylation that cuased the nasty sides. And, Neulasta is MUCH more expensive than neupogen.  The more it costs, the worse you feel - sounds about right. I'd rather have more frequent shots of neupogen than fewer shots of Neulasta..

[Karay]

I used to get wicked bone pain - bad enough to wake up me but found that once I increased my water intake (at least a gallon a day) that it helped.  It also helped a great deal w/my headaches.  Its been about 4 months & still works like a charm.  Of course I have about a gazillion other sx that I could talk about (never easy!!)  Good luck & stay strong!

[Kalio1]

I was told we are not to take steroids on tx.

[sfbaygirl]

I remember you saying you had more sx with the Neulasta. When I went to Hemo Saturday, there were a line of patients getting Neulasta shots (I knew because there charts were lined up with post-its) A few got Neupogen. Since I am going to Jamacia in a few weeks, I thought one more Neulasta shot would be good, since I will be gone for two weeks, unless he will give me Neupogen to go. I guess I am at his mercy for awhile. I sure won't be fun to deal with these headaches and bone pain for a week (about how long the sx seem to last).

I think you are right about the money it costs! I guess they want you to get a bang for your buck!

Did you try steriods?

[sfbaygirl]

No Steriods? Why is that? There are different kinds.  Any info would be helpful! Thanks

[FlGuy]

No, didn't have steroids. Although I had regular appointents with the hemotologist I got the idea early on that the results of the cbc drives their decisions and not necessarily the dx of hcv. If the hemo had suggested steroids at any point I probably would have gone back to the tx doc to validate their appropriatness to the liver condition.  Most of the patients at the hemo office were oncology patients, I was probably more of an oddball for them to deal with.

[Kalio1]

Yes, that is true, there are different kinds. I was told and have read they are hard on the liver and contraindicated with liver problems. What type exactly does he want to use? Do you know the name of it yet?

[sfbaygirl]

I don't know the name of hand, of the steriods. I will know in a few minutes when John picks up the script.

I would call the GI about this, but since I called about not holding any food down for 3 days, I was told he would get back to me in 48 hrs. I won't hold my breath.

I have been drinking non stop water, and am holding it down today, so far.

I used to take some suppository for nausea with migraines, when I couldn't stop vomitting, but I forgot the name and don't know if they are indicated for tx either.

I heard someone on this board talking about taking steriods.  Glad I asked here before taking them! The heating pad helps and it seems a bit better today.

[GoofyDad]

My limited knowledge is that the anti-inflamatory steriods do their thing by suppressing immune response. Interferon does it's thing by triggering immune response. It's like that spewey in the hot tub thing. Well, actually I guess it isn't.... but still it doesn't sound like a great idea to me.  

I emailed my doc about getting a steroid shot in foot and he advised against it.

[sfbaygirl]

What is a spewey in the hot tub thing? YOu talking about egg drop soup?

[GoofyDad]

I was. But just having some fun. Google "steriods immune response". I'd be cautious about taking steroids until you have spoken to someone familiar with HVC and Interferon therapy. Good luck.

[sfbaygirl]

The steriod he gave me is Dexamethasone. I take one tab a day for four days. At this point, I won't until I talk to dr.

[Kalio1]

Let's just hope you are feeling more chipper in a few weeks when your trip to Jamaica starts. I sure have learned to appreciate any good days or hours I get nowadays.
I hope your symptoms ease up soon. If you are taking the Ensure, don't worry too much about not being able to get food down. Ensure is great if you can gag it down.
Hang in there.

[Mister beagle bailey]

I have heard this with the NEULASTA and I think it's because it's a time release drug and very powerful for many.  If it was me I would ask for the NEUPOGEN and forget about the steroids to as it to has an effect on the liver.  I think many drs try to push curtain drugs because they receive funds for doing so.  

I have the pain in my feet and legs which is caused by the procrit.  Just did 60,000 units today so here goes another week with pain, can't wait till I don't need it any more.

Beagle

[sfbaygirl]

So the Procrit causes the achy legs? Not bone, but muscle type pain? I seem to have both. Aranesp doesn't seem to be bad, so far. Of course, I don't know what is causing what!

I think you are right about skipping the neulasta and trying to get the neupogen. I am going to call my dr. after lunch and ask about that and not taking the steriods. The first few days are brutal on that Nuelasta! I thought I was going to jump outta my skin!

Are you still on the procrit? I know your numbers are so low that perhaps you are.

[Kalio1]

I don't know, I wouldn't take it. It does list liver problems as something to alert the dotor to before taking it. It also says it causes stomach upset, if you already have stomach upset that could be a problem. It states it suppresses immune response like Goof pointed out so that is counter productive with IFN. Here's a link
http://health.msn.com/drugfinder/articlepage.aspx?cp-documentid=100106455

[MissMiss]

Neupogen every day for a week??  What is your WBC right now?  Do you know what dosage he will rx?

That is an awful lot if it is regular 300 dosage!  But, when I first started I did three a week, then two, now down to one.  If your WBC is even 1.5 or 2 I would think starting with 2-3 Neup would be much better.  Then adjust from there after another CBC.  I responded real well and definitely am no expert but 7 a week sounds outrageous!  

Clariton for bone pain?  Hmmm.  I wonder why but at this point I just may try it.  Let me know how it works.  I am hoping for a good resolution to your Neup rx.  Let us know!

miss

[MissMiss]

On a side note, I am wondering what the maximum dose of Procrit anyone has been on.  I am on 80 per week and just got a call my HGB is down to 9.0, platelets are 51.  Neup works great on me, WBC are 3.8, usually 4. or normal.  I am 41/48 or so.

Neulasta vs Neupogen--I think Neulasta is often used to get you started since it works quickly and lasts longer and using Neupogen is for maintenance and that dosage can be adjusted.  I responded super quick, WBC were something like 27,000 after Neulasta and the Neupogen holds me at safe levels.  I'm sure the cost is a factor too.

Thanks everyone!

miss

[sfbaygirl]

The way bone pain feels to me is pain deep in the bones. I get in my legs spine, neck, arms, fingers etc. What was really disturbing is the pain I felt where I had a bone marrow bx a couple of months ago. It feels like the needle is still in there! The muscle pain seems to feel better when they are rubbed. Sometimes the bone pain seems to just throb like crazy.

Not a great description, but sometimes they are hard to distinguish.

[Kalio1]

I get that kind of bone pain from the INF shots!

[sfbaygirl]

I looked the steriods up too. I didn't like what they said. MORE URINATION? Just what I need!

I was wondering how the heck I was going to even get steriods down, when every pill I took (except Riba!) came back up. So I got NO pain relief. Yes, my stomache has been upset. Today, I am feeling better. I can post at least! Yesterday, I ran out of bottles of water, and could care less. Thankfully, my housekeeper ran out and got some when I told her I couldn't deal with it.

It had to be bad, I couldn't even eat ice cream or popcicles- didn't even feel like it

Glad to hear you are feeling good lately. When I feel good, it's like a miracle happened! I am so happy! Still waiting for that sx calendar all filled out! LOL And of course the time machine. I have 10 more months-so far-so you are ahead of me!

[MissMiss]

Bone pain is very hard to describe but I think you came pretty close.  My legs are my problem with it, mostly my right from the hip down.  I waddle the "old lady shuffle" trying to walk.  Lately I think there is a lot of muscle pain too.  

I wonder if that is more from lack of use, muscle atrophy or just another way these drugs kick our behinds.  

I'm sorry to hear others have it bad too.  I was hoping since my legs are hurting so much all the time, I was taking it from someone else so they wouldn't hurt.  Nice thought anyway.

Hope you fair well in the heat!

miss

[sfbaygirl]

My Hemotologist just called and said I could take Neupogen, but I would have to take it everyday for a week until my blood came back up. He said I would have bone pain anyway. YUCK. It sounds like you guys don't take Neupogen every day! Maybe that is just for awhile... He said that is why the Neulasta is a better idea, since it lasts for 10 days.

He also told me that I should try Clariton for bone pain and then  try the steriods. He told me that since I will only use these steroids for a few days, it shouldn't hurt my liver, much.

Codeine doesn't do much for the pain. I think I will try the Clariton. Anyone with bad things to say about Clariton?

Thanks for all the comments and suggestions!

[sfbaygirl]

I was having bone pain (didn't realize it) every month when I had periods instead of cramps. Just one thigh bone. I would pound it with my fist to ease the pain! LOL Now I have that all over.
So I don't think it is lack of use. Sometimes my knees hurt and if I exercise them, the pain seems to go away after a few days. I think that is lack of exercise.

I think I am going to try Clariton and see if I get any relief.

This isn't fun is it!

[MissMiss]

I was just reading the other day about steroids and tx.  I think Goof's explanation pretty well sums it up.  At one point it was suggested I take a course of prednisone while on tx and was adamantly (sp) advised NOT to do so.

Neupogen-Can anyone give a good, clear description of "bone pain".  I am curious how others would describe it.  Both Neup and Procrit give me some pretty good bouts of it.  I didn't think I would need my handicap parking much but am so thankful on those days.

I hope everyone is hanging in there A-okay!

Miss

[sfbaygirl]

I took a Claritin for the bone pain a little while ago and low and behold- IT WORKED! Of course it could be something else like the analgesics, but they haven't worked so far!  Check it out!

My wbc is 1.3 and ab neuts are .6. I JUST got a Neulasta shot, so I won't do that again (or Neupogen) for a while.

I have never heard of anyone doing these everyday, or even a few times a week. Sounds like you are now on one a week?  Since mine are up, you would think he would just give me the Neupogen in 10 days if my number is good.

He says I will still have all the bone pain when I take the Neupogen. Do you get it after the shot?

[MissMiss]

You might be on to something about Neup and Proc at the same time.  Since doing the two together, I am sick and have a fever the next morning.  Eat?  What?  Now you want me to eat with this stuff!  lol

You probly know this but bone marrow makes all our blood cells.  The drugs are supposed to stimulate production.  I was told by an old dr friend that movement of the large bones also will help production.  Water helps too.  It's a vicious circle we put our bodies through each week.

Jamaica!!  I am so jealous!  Been watching some of those shows about traveling and the food.  Mmmm, I hope you get your hands on some of the good stuff while there and it actually tastes good!  Do you get the metal taste when you eat?  Well, I hope it stays on the mainland while you are over enjoying yourself.  Watch out for the sun while there.  (don't forget your clariton too!)  Hope you have a great time.  And let us know what doc says about Neup when you get back.  It will be nice not to have to worry about a Neup shot while trying to have fun.  

Melissa

[sfbaygirl]

Eat? What? Now you want me to eat with this stuff! lol
____________________________________________

Oh yes! And cook it too! Gourmet meals that take 5 hours of prep. That is what the dr. ordered.

Geez, I am lucky I can keep pushing the water bottle to my mouth let alone solids. This weekend, I wanted an IV. The Ensure helped. I drank one Monday and started to feel less weak.

Hey, how about those BIG shopping trips to the market? Two basketfuls of all fresh food waiting to be peeled or put away? That's the fun part, then comes the prep...  Don't you feel like hobbling around the store with an ugly pained face snapping at stockboys? This is the part I REALLY love.

If I can stomach it, I'll take a chicken pot pie!

[MissMiss]

Oh my goodness!  I was gonna say something about that being a mouthful but decided not to.  Or did I?  hahaha  By the way, don't ya love that question:

What's for dinner?  

I have a few curt answers all lined up.  Seriously, I hear ya.  It's really what we need, all that fresh stuff, but noone is supplying someone to do it for us.  Don't know about everyone else but I can't seem to cook much that isn't a bit bland these days.  You'd think my family would be loosing weight!

I have enjoyed our chat.  Here's hoping for a very good day for us and everyone else!

miss

[sfbaygirl]

Good morning to you!

I woke up this morning in agony. I took some Claritin for the pain and it helped quite a bit, but the pain is still there. So we will see!

Thanks for the info on Neupogen. I may have to tough out the Neulasta through the vacation and see if I can do the Neupogen when I return. There is no way I can get CBC's in Jamacia.

I do get a CBC once a week. After the last Neulasta shot my neuts jumped up to over 3.4! I was a happy camper for a couple of weeks. The bone pain wasn't as bad as now. I didn't need another shot for about 3 weeks! That was good and I didn't have the bone pain the whole time. I have had the bad pain since Sat. morn when I took the Procrit (Aranesp) and the Neulasta at the same time.  Wonder if it is the combo of both at the same time?

Yes, we will get through it. Last night I was so happy and pain free, I cooked a nice dinner and did stuff around the house. First time in a week.

Hoping your having a less pain today!

[MissMiss]

Good morning,

Yes, I get lots of bone pain but really am unclear if it is the Neup or Procrit.  When I started splitting the Proc into two 40 shots a week it may have evened out.  I don't know if it was worse all at once or now just a constant pain every day.  It has been so bad that just walking across the yard is almost more than I want to do.  When doing two and three Neup a week, I remember just laying on the couch in tears a few times it hurt so bad.  Also unclear if you just try to walk through it, if it gets better.  I don't think it does, in fact, may get worse.

But, I also just tested positive for cryo and remember similiar kinds of leg pains for a long time, having to really concentrate while walking that I raise my toes so as not to trip.  Just before starting tx I also had an MRI showing abnormal bone marrow.

I guess I am saying I may have worse pain for reasons other than the drugs.  You may fair much better.  How far do your wbc's go up after Neulasta?  Do you do weekly CBC's?  I do.  I hate it but is really the only way to be sure where you are at.

Real curious how the Clariton helped the bone pain.  It must somehow block something.  When my ins wouldn't pay for Ambien my GP picked another sleep aid that was an antihistimine type drug and I was afraid to try it.  Might just be the ticket tho!  Thanks for sharing that tidbit.

Either way, don't be afraid to ask for Neup over the Neulasta.  I still think every day would be way out of line.  Ask him to start with 2-3 and then a weekly CBC.  Neup doesn't last long and it will show how effective it is by the next week.  Then make adjustments.  I feel for you, it isn't easy.  We just have to make it to the end and pray for the best possible outcome for us all.  Let us know how this works out for you and enjoy the summer.

Melissa

[Neenah65]

I have had 4 of the neulast shots and chemo, Radiation the whole 9 yards.  My Legs hurt me sooooo bad.  How long will this last?  My last shot was Dec.  I have been reading all these posts and it has helped to know what is causing it.

[Mikkimoe]

So sorry your sick...I hate migrains and bone pain...not to mention barfing. Not a good thing. Your post does concern me because I take prednisone everyday for my RA as well as 2 Enbrel shots p/wl. I take about 7 mgs a day. I have for 14 years so my body is pretty much addicted to it (My adrenal glands would probably not work on their own any more) From what I understand our body make about 4 mg a day so that's about as low as I could go. Sure hope it won't have a big inpact on my tx. I'm going to see 4C's Cedar doc and HR as well as my UCI doc and hope that I get some good news on these contraindications. I'd hate having to go back to my wheelchair - but it would still be worth it.

As for Neusea: Here are a few things that may work that are non-medicinal.
eat madarin oranges - along the citrus line, sniffing lemons or oranges helps
suck on lemon candies or life savers
Vit B6 is suppose to help
munch on crystallized ginger
drinking something bubbly, like flavored seltzer or diet sprite
sea bands, acupressure wrist band thingies.
ginger tea - steep some grated fresh ginger in hot water. strain and drink
eating crackers
You'll really like this one - Preggy pops...hey if they work for those mommies to be who knows? http://www.drugstore.com/products/prod.asp?pid=155150&aid=336064&aparam=preggie_pops