EXTREME bone pain with Neupogen injections, advise welcome!

[lisakc1]

Has anyone experienced extreme pain with Neupogen GCSF injections? My husband has received 2 out of 4 injections and is in agonizing bone pain. His specialist recommended a hot bath, Claritin, and Tylenol. I also have a heating pad on his back. Just wondering how long this will last and how he is going to get through the next two injections, hoping it doesn't get any worse! Perhaps his body will adjust??? Thanks to all in this group!!!

[Jm954 Administrator]

I'm afraid there is severe bone pain with Neupogen and it's due to the rapid expansion of your bone marrow in response to the Neupogen GCSF growth hormone.

I don't know how long it lasts but when my son was a bone marrow donor and had the injections he had to take both paracetamol and ibuprofen to dampen the pain. He was having injections every day which I presume your husband is too.

I think he might have to just grit his teeth and cope as best as he can because if he needs the injections then he needs them.

Jackie

[lisakc1 in reply to Jm954]

Thank you.... we will discuss with his specialist this afternoon!

[SofiaDeo in reply to lisakc1]

Make sure your husband has extra nutrition on board, if not contraindicated. Extra protein, iron, B complex, C, trace minerals. He's trying to make extra cells, and when one is under stress for whatever reason, nutrient absorption can be affected. So a double whammy with getting treated, and being on a stimulant med. IMO extra is a good idea unless he is protein restricted, or whatever.

As someone who happens to have documented absorption problems, and not a huge meat eater, I get anemic easily. Even before CLL. And am fortunate enough that when I boost nutrition intake, I can correct it. Maybe he can too, with his neutrophils. I imagine if one is *trying* to make new cells and the nutrients aren't there, it might also contribute to bone pain. With the marrow being constantly stimulated and all.

[lisakc1 in reply to SofiaDeo]

Thank you! I have been keeping him on a pretty healthy diet, He LOVES food, so it’s not hard! He also takes vitamin supplements. I was shocked at the sudden onset of excruciating pain, 8 hours after injection and it resolved in 5 hours. He is taking Claritin and Tylenol now before his injections, hoping it helps! Right when you think the body has adjusted and smooth sailing ahead… hoping this is just a bump in the road, but at least now we know what to expect! Thank you again for your support and invaluable advice!

[Poodle2]

I find I used to get the pain in the first few weeks of using them and although I still use them now, no bone pain anymore. Paracetamol helped me to some extent but the pain was bad. My shoulders and knees were the worst.

He will hopefully eventually get to the point where he will not need to use e.g. 5 injections in a row.

How often does he take them? I find it easier if you take 1-2 doses a week regularly to avoid having to do 5 in a row to bring them up to a safer level. When you take them regularly e.g. 2 doses a week, you maintain a safe level all the time and no need to subject your bone marrow to the sudden "high doses" - I hope it makes sense.

Perhaps something you could discuss with your doctor? How far into treatment is he? The first four months were very difficult in terms of managing my neutrophils. I'm now about to start cycle 8 and taking them 1x a week for the last two cycles. The previous two cycles I had 2x a week. My consultant calles it a "maintenance dose".

[lisakc1 in reply to Poodle2]

He is on cycle 6 and preparing for his last O infusion when Neutropenia hit. The Specialist took him off meds for a week, and his numbers only went down. He was supposed to get 5 injections, but since Monday is a holiday, they are trying his last infusion after 4 injections this week. No talk of any further injections at this point, don't think insurance will approve more without subsequent blood tests. He is taking Tylenol and Claritin, but may need something stronger. perhaps we can get a prescription today! The pain presented about 12 hours after injection and magically disappeared after about 5 hours, this is strange. Thank you so much for your insight!

[Poodle2 in reply to lisakc1]

Yes, they won't give you more unless he is neutropenic, they always need to do a blood test. Since this is his first round, they will probably just wait and observe to see the trend and react. The pain is bad but I always just said to myself, if it is hurting, it is working, if it is working, it is helping me to stay safe (I had neutropenic sepsis and to be honest with you, I would rather take the pain than have that again).

Hope it does get easier.

[Hidden]

I had really bad pain and nothing worked. Once the injections were done I’d start feeling better. Dr also reduced the number of shots from 7 to 3 or 4. I had shots after rounds of BR.

[Palmetto]

Always helped my husband to take Claritin starting a day before the injection and this was advised to my daughter in law when she was getting Neulasta during breast cancer treatment. But it has to be before getting the injection, if you wait until after it is too late.

[lisakc1 in reply to Palmetto]

Thank you! We found out the hard way, but glad we know now!

[IRN83]

I’ve had numerous Neupogen shots and extreme bone pain. Unfortunately for me nothing helped. Sorry I’m not any help or encouragement.

[lisakc1 in reply to IRN83]

The Claritin seems to be helping! I'm amazed, but nothing stronger was offered.

[Palmetto in reply to lisakc1]

The first time it happened I actually had to take him to the ER and they gave him morphine then I researched and found out about the Claritin. Sylvester Cancer Institute here in Miami includes Clairitin their protocol for breast cancer patients who get Neulasta. Check out some of the breast cancer health forums and you’ll hear all about it. It is a histamine response since so many white cells are being created rapidly . There is pressure in the marrow.

[LeoPa]

I think I would load up on pain medication to the point of being knocked out. And if its lights out at least I don't have to suffer.

[Dahlia7]

I just finished 4 Neupogen injections daily 4 days ago. I still felt very sore and weak yesterday. I seem better this morning. For me the discomfort was cumulative getting worse with each subsequent infection. My neutrophils did go from 0 to 12,100. I didn’t take anything but probably should have. I think time is your friend. Good luck. Tony

[lisakc1 in reply to Dahlia7]

If you ever have to repeat the process, 10MG of Claritin a day BEFORE the injection really helps!

[Jdhanoa in reply to lisakc1]

Hi Lisa,

Would you recommend 24hrs before injection or anytime the day before m? Thank you

[Smakwater]

I was recommended by the oncology nurse to take Claratin prior to my G-csf injection. I forgot, and I had severe bone pain for approximately 10 hours.

[lisakc1]

Thank you , we didn't find out until AFTER the second injection, that was disturbing!

[Hidden]

I took the Claritin before the shots but they didn’t help at all.

I was told the shots are harder on younger individuals but not sure if that’s what others have experienced.

[AussieNeil Administrator in reply to Hidden]

It would make sense that the G-CSF shots can be harder on younger individuals, or more specifically those who are able to more strongly respond to the stimulus to make more neutrophils. If this is the case, then within a few days of the bone pain, neutrophil counts should go very high - most likely well above the upper reference range.

One of the possible side effects of G-CSF injections is a ruptured spleen from the pressure of an excess of new neutrophils. (Neutrophils use the blood stream to move from the bone marrow to the tissues, where the do their protective work, with any excess stored in the spleen for later release.)) I've never heard of a spleen rupture from G-CSF injections happening with someone with CLL though.

Neil

[Eedew]

Claritin without the D, generic is fine, once daily. 10 mg

[lisakc1 in reply to Eedew]

yes it’s the lotrimin histamine blocker