[Eponymous]

Re: Neupogen and bone pain (SCT prep)

by Eponymous on Wed Jul 02, 2014 2:19 am

I likely have a different experience than most of you. I was the first documented allergic reac­tion to new Neupogen back in 1994! To say the bone pain is excruciating is by far an understatement.

When my neck started to hurt, I treated it like most back pain with ibuprofen and ice packs. As it worsened, I spent two days soaking in the tub, using as little energy as possibly, moving as little as possible, all to avoid exacerbating the pain.

Eventually the pain got so bad that it affected everything. I couldn't sit or lie down. I couldn't sleep. There was no position I was comfortable in at this point! My caregiver took me to the hospital where I spent a week on IV narcotics and sedation.

My advice when it comes to bone pain is not to be a hero. Be completely honest with your doctor about how bad it is! For me, it was literally like there was ground glass from my neck all the way down to my tailbone, and everytime I moved, I felt like screaming!

The upside, however, is that my doctors were able to lower my dose and the bone pain and the other side effects of Neupogen abated. So, if you're having serious side effects, you should defi­nitely start by consulting your doctor! It's really the only place where you will get accurate in­for­ma­tion that will truly help.

I have 21 years of remission and I hope the same for all of you! Best wishes to everyone!

[owensemm]

Re: Neupogen and bone pain (SCT prep)

by owensemm on Fri Aug 01, 2014 3:45 pm

In case anyone stumbles on to this website looking for help with the exploding back pain caused by Neupogen or Neulasta, I have had to use both of these a lot dealing with cancer for three years. First time I reacted to it, we called an ambulance at 2:00 am and they put me on morphine to ease the pain that was making me cry. ER doctor ran some tests and said I was a hypochondriac or some­thing to the effect that it was in my head, since tests showed nothing. My wife forced him to admit me, all the while asking him to call Stanford, where my oncologist was.

Finally, we got a nurse to call there several hours later and my oncologist nailed it in 10 seconds. Take 10 mg of Claritin once a day and 400 mg of ibuprofen every 8 hours. Bingo!! It is a good idea to start this regimen before you start taking the shots and then for a couple of days after. I take 10 shots and I start taking the meds at about shot 5.

And I fully agree with the person who said the doctors do not give you enough warning or help in how to deal the pain. Its like having a root canal with no Novocaine, only it's in your spine and it does not have to happen.

[Dr. Peter Voorhees]

Re: Neupogen and bone pain (SCT prep)

by Dr. Peter Voorhees on Fri Aug 01, 2014 9:01 pm

There are others who have also noted significant relief with the use of Claritin (loratadine) in regards to Neupogen / Neulasta-induced bone pain, although I am unfamiliar with the mecha­nism by which this works. As far as ibuprofen is concerned, that should only be used if the platelet count is adequate and kidney function good.

Pete V.

[Joy]

Re: Neupogen and bone pain (SCT prep)

by Joy on Sat Aug 02, 2014 7:57 am

Thank you Owensemm and Dr. Voorhees! I think these are really important comments that could save people a lot of unnecessary suffering. Too bad the advice isn'y given upfront by the medical staff associated with the shots.

[Sallyca]

Re: Neupogen and bone pain (SCT prep)

by Sallyca on Tue Aug 05, 2014 4:16 am

I had NO pain, and ended up being on Neupogen for another three days waiting for the stem cells to mobilize, and even then I only experienced mild pain. When I went in the first time to test for collection and I said I had experienced no pain, I was told by the clinician that was not ideal, as the pain means the stem cells are being mobilized - so in this instance PAIN = GOOD! The pain stopped as soon as I stopped injecting the Neupogen.

[Melpen]

Re: Neupogen and bone pain (SCT prep)

by Melpen on Sun Dec 21, 2014 12:30 pm

This is a case where the Myeloma Beacon has been such a valuable source of information.

I had to up the injections of Neupogen to 2-a-day over the weekend to help mobilize for col­lection on Monday. Up until this weekend, I did not have any bone painm and then the pain hit like a freight train at 8 p.m. Saturday. Terrible lower back and pelvis and knee pain. I could barely move or walk.

My dear husband ran out to the pharmacy to get Claritin after I read about it on the Beacon and, after taking that with 2 Tylenol, the pain subsided in a few hours. Early Sunday, I took 2 more Tylenol when I felt a bit of pain coming on and – voila! – no pain at all within 30 minutes.

The Claritin lasts 24 hours and I'm so relieved to know that, with the Claritin each day and a bit of Tylenol, I will be pain free.

[Jayelevy]

Re: Neupogen and bone pain (SCT prep)

by Jayelevy on Sat May 09, 2015 9:20 pm

Dr. Peter Voorhees wrote:

Anecdotally, we have had success with loratidine (Claritin) and it is a very safe drug to take for this indication. NSAIDs (e.g. ibuprofen) can be helpful, too, but I would avoid them if there is any evidence of kidney problems, high levels of serum free light chains related to the myeloma, or low platelets (e.g. <50). This should definitely be discussed with a physician first.

On behalf of myeloma physicians everywhere, deepest apologies for under­esti­mat­ing Neupogen-related bone pain. It is very real, but, thankfully, of limited duration.

Thanks Peter. The bone pain was sort of poo poohed. So I didn't expect its severity. However, both you and Dr. Wood provided me with enough medication to control the pain. Thanks for all you do for us.

[Marcia]

Re: Neupogen and bone pain (SCT prep)

by Marcia on Fri May 15, 2015 10:37 am

My oncology nurse at the hospital told me I would experience less pain if the injection were made at a site where the Neupogen would be absorbed into fat.

I had been injecting myself in the upper thigh. While in the hospital for a fever, the nurse sug­gested we experiment with injections in the belly. The pain level decreased dramatically. The fat absorbs the medication and slows down the reaction as explained by my nurse.

Good luck to you!

[Mister Dana]

Re: Neupogen and bone pain (SCT prep)

by Mister Dana on Sat May 16, 2015 1:42 am

I got no bone pain fron Neupogen, nor from the stem cell harvesting. I've had a shot of Neulasta, the long acting Neupogen, for something else and got no pain from that, either. So for those who haven't had it yet, know that they have to warn you, but you might not get bone pain,at all.

[heddleandhook]

Re: Neupogen and bone pain (SCT prep)

by heddleandhook on Sat May 30, 2015 1:54 am

Marcia,

Very interesting!

I'm getting 4 injections of Neupogen each week to get my WBCs and ANC up. I'm just starting my 5th round of RVD because my M spike has stopped coming down. Plan is for harvest and SCT later this summer.

The first two weeks I had the injections in my abdomen and had very minimal discomfort, just the kind of bone pain that I had already become used to from way back. But then I started getting the injections SQ in my arm and the pain is almost unbearable despite Claritin, Tylenol and ibuprofen. When I go in tomorrow, I will switch back to abdomen and see if that helps.