Aa
Extreme Back Pain Difficult
For the last three weeks I have been in constant pain. I have tried rubbing, soaking and Tylenol.
I assume the problem is caused by Riba and or Neupogen. I have also used a TENS machine. Nothing seems to control or stop the pain.
Has anyone else experienced this issue during tx? What can I do about this other than hope it stops?
The pain is wearing me down and it is difficult to work past it. I probably can take this better than
the Incivek issues I experienced, but as the weeks go by it is getting to be more and more of a problem.
The pain moves from one side of my back to the other throughout the day.
Any suggestions. I've tried topical creams, soaking. mild heat and Tyelenol.
Reva
I assume the problem is caused by Riba and or Neupogen. I have also used a TENS machine. Nothing seems to control or stop the pain.
Has anyone else experienced this issue during tx? What can I do about this other than hope it stops?
The pain is wearing me down and it is difficult to work past it. I probably can take this better than
the Incivek issues I experienced, but as the weeks go by it is getting to be more and more of a problem.
The pain moves from one side of my back to the other throughout the day.
Any suggestions. I've tried topical creams, soaking. mild heat and Tyelenol.
Reva
I am taking D and will add C. Thanks for the suggestion.
My case is rather complicated. I do blood work every week.
I would guess my neutrophil count is low now because I haven't taken
my Neupogen. I will take a little later just so I make sure it's at least .5.
I 'll talk with my nurse tomorrow. They're going to have to come up
with a better plan. Maybe I can inject the day before interferon and the day
after and make it. Maybe I can do less than 1/2 dose.
For me to tolerate tx they are going to have to come up with something.
I don't want to have to take Vicoden with my tx.
Reva
Reva
My case is rather complicated. I do blood work every week.
I would guess my neutrophil count is low now because I haven't taken
my Neupogen. I will take a little later just so I make sure it's at least .5.
I 'll talk with my nurse tomorrow. They're going to have to come up
with a better plan. Maybe I can inject the day before interferon and the day
after and make it. Maybe I can do less than 1/2 dose.
For me to tolerate tx they are going to have to come up with something.
I don't want to have to take Vicoden with my tx.
Reva
Reva
Thanks for explaining. Yes, I understood you were talking about 3 half doses. I couldn't tolerate one full dose but that's me.
.1 is awfully low and I didn't know about your background.of already having neutropenia going into treatment. That certainly would complicate things.
I'm glad to hear you have a good hepatologist that you trust. That's important.
The first time I did tx, I took neupogen twice weekly and recall lying in bed with my bones aching. I assume you're taking calcium and D to help keep your bones healthy.
Hoping you find relief soon,
OH
.1 is awfully low and I didn't know about your background.of already having neutropenia going into treatment. That certainly would complicate things.
I'm glad to hear you have a good hepatologist that you trust. That's important.
The first time I did tx, I took neupogen twice weekly and recall lying in bed with my bones aching. I assume you're taking calcium and D to help keep your bones healthy.
Hoping you find relief soon,
OH
Can you tell me if you took the Neupogen prior to interferon injection or after? I think I'll probably have to play with the days I take Neupogen.
When I was taking it twice a week I didn't have this problem.
Also, did you notice I only take 1/2 dose. That's because my body is
especially sensitive to Neupogen. A little goes a long way. It has on occassion gone off the chart with the increase to the degree the lab would make a call to inform my doctor that it was a really high number.
I think some adjustments will have to be made because the pain is
nearly unbearable.
Thanks, Reva
When I was taking it twice a week I didn't have this problem.
Also, did you notice I only take 1/2 dose. That's because my body is
especially sensitive to Neupogen. A little goes a long way. It has on occassion gone off the chart with the increase to the degree the lab would make a call to inform my doctor that it was a really high number.
I think some adjustments will have to be made because the pain is
nearly unbearable.
Thanks, Reva
My ANC dropped to .1 and they didn't want it that low.
I don't think I will be continuing with three doses forever.
My normal ANC is low. I had a diagnose of autoimmune neutropenia prior to treatment. They don't want it to become zero.
Did you understand I was taking 1/2 doses three times a week. That's less than two full injections. With that dose my numbers have been around 1.6.
.
My doctor is considered one of the best in the midwest. He heads both
a medical school program and the hepatology department at a local
teaching hospital. I feel comfortable discussing your concerns with him.
He is the only person who would take on my treatment because of my low
ANC count. I was barely in the normal range when tx started.
I too have read reports that indicate low ANC numbers during HEP C
treatment may not be as dangerous as once thought, but I would think .1
is too low. I will ask if I can be reduced later this week. I do know that I react very quickly the the numbers can really high sometimes with just a 1/2 dose.That might be the problem.
I was joking about Lawn Mower Therapy, but I do think the exercise I get while pulling the machine helps my back.
Reva
I don't think I will be continuing with three doses forever.
My normal ANC is low. I had a diagnose of autoimmune neutropenia prior to treatment. They don't want it to become zero.
Did you understand I was taking 1/2 doses three times a week. That's less than two full injections. With that dose my numbers have been around 1.6.
.
My doctor is considered one of the best in the midwest. He heads both
a medical school program and the hepatology department at a local
teaching hospital. I feel comfortable discussing your concerns with him.
He is the only person who would take on my treatment because of my low
ANC count. I was barely in the normal range when tx started.
I too have read reports that indicate low ANC numbers during HEP C
treatment may not be as dangerous as once thought, but I would think .1
is too low. I will ask if I can be reduced later this week. I do know that I react very quickly the the numbers can really high sometimes with just a 1/2 dose.That might be the problem.
I was joking about Lawn Mower Therapy, but I do think the exercise I get while pulling the machine helps my back.
Reva
That's definitely the first time I've ever heard of anyone getting relief from back pain by struggling to start a lawn mower!
Oh it's that nasty neupogen !
Why are they having you take it three time's weekly ?
You know the whole idea of even using it for neupogenia caused by interferon treatment is controversial. There's research showing that we rarely get the infections that occur with neupogenia with cancer patients.
How low are is your anc ?
I took it weekly when my anc was .5 ( or 500).
I simply could not tolerate taking a full dose. Being small and med sensitive, the first dose had me aching just to walk, or stand. My hepatologist was wise enough to allow me to cut my dosage in half weekly but only when my anc was .5 or below.
There is no reason for you to be enduring this pain.
It seems so much better to simply treat the infection with antibiotics IF or when we get one.
Those docs aren't doing these meds. Sorry Reva, this makes me mad~ grrrrr !
Why are they having you take it three time's weekly ?
You know the whole idea of even using it for neupogenia caused by interferon treatment is controversial. There's research showing that we rarely get the infections that occur with neupogenia with cancer patients.
How low are is your anc ?
I took it weekly when my anc was .5 ( or 500).
I simply could not tolerate taking a full dose. Being small and med sensitive, the first dose had me aching just to walk, or stand. My hepatologist was wise enough to allow me to cut my dosage in half weekly but only when my anc was .5 or below.
There is no reason for you to be enduring this pain.
It seems so much better to simply treat the infection with antibiotics IF or when we get one.
Those docs aren't doing these meds. Sorry Reva, this makes me mad~ grrrrr !
Actually. I think it may be the combination of Interferon and Neupogen.
Prior to treatment I was told my back pain could worsen with Pegasus.
I was told that before the Neupogen was even introduced. I would conclude from that interferon can cause discomfort.
The pain wasn't bothering me until I stopped Incivick. Soon after my Neupogen was INCREASED. I was taking 1/2 dose of Neupogen twice weekly with very litte pain. After the dose went up to 3 times weekly the pain started and has continued to get worse. Maybe it could be cumulative as I didn't have pain like this when I treated before and I was taking Neup. 3 times weekly. I stopped treatment earlier due to problems so not as much in my system.
Finally, exercise may be key because earlier today I remembered, in the past, when I used my self-propelled lawn mover I got relief. Maybe the vibration helps. I'm not sure, but my mower has been down and I didn't feel like getting it going (under the influence of tx I poured some stale gas in the machine)
Today I decided to give the repairs a try. I had to keep pulling the cord
to start the thing and it kept stalling. Never got it going properly, but when it was over my mid-back, shoulder pain had calmed down considerably.
Tomorrow I will investigate the carb since draining the old gas and the new
filter didn't work. I may have a little "shellac" build up.(in the mower)
In past years I had used the lawn mower for relief, but brain fog had taken
the memory of doing that somewhere else. If anyone has the strength and a power mower it's a cheap experiment to try lawn mower therapy.
It takes a lot of effort for me to start the right-handed machine. I have to use
the cross-over technique because I'm left-handed. Then the constant vibes
from the engine seemed to help.
After a few more days of this high tech therapy I'll report my findings.
Reva
Prior to treatment I was told my back pain could worsen with Pegasus.
I was told that before the Neupogen was even introduced. I would conclude from that interferon can cause discomfort.
The pain wasn't bothering me until I stopped Incivick. Soon after my Neupogen was INCREASED. I was taking 1/2 dose of Neupogen twice weekly with very litte pain. After the dose went up to 3 times weekly the pain started and has continued to get worse. Maybe it could be cumulative as I didn't have pain like this when I treated before and I was taking Neup. 3 times weekly. I stopped treatment earlier due to problems so not as much in my system.
Finally, exercise may be key because earlier today I remembered, in the past, when I used my self-propelled lawn mover I got relief. Maybe the vibration helps. I'm not sure, but my mower has been down and I didn't feel like getting it going (under the influence of tx I poured some stale gas in the machine)
Today I decided to give the repairs a try. I had to keep pulling the cord
to start the thing and it kept stalling. Never got it going properly, but when it was over my mid-back, shoulder pain had calmed down considerably.
Tomorrow I will investigate the carb since draining the old gas and the new
filter didn't work. I may have a little "shellac" build up.(in the mower)
In past years I had used the lawn mower for relief, but brain fog had taken
the memory of doing that somewhere else. If anyone has the strength and a power mower it's a cheap experiment to try lawn mower therapy.
It takes a lot of effort for me to start the right-handed machine. I have to use
the cross-over technique because I'm left-handed. Then the constant vibes
from the engine seemed to help.
After a few more days of this high tech therapy I'll report my findings.
Reva
I'm so sorry to hear of all that back pain. I do know the feeling all too well. I checked your location in the hope that you would be nearby, as I could recommend an amazing chiropractor with a true gift of healing hands, but alas, we are nearly on opposite sides of the country. Can you think of anyone in your area who might be able to refer you to someone good? Over the years I've seen lots of different physical therapists, acupuncturists, chiropractors and masseuses, and my take away feeling is that any of them can be wonderful or useless, I think it depends less on the techniques adopted than on the innate healing abilities of the individual doing the technique. I would consider ANY of the options as long as the person has a good track record of helping people feel better and healing.
Another good possibility might be warm water exercise if there is an aqua therapy pool in your area, or spending time in a jacuzzi might even help a little. If none of those suggestions are an option for you, you could also consider asking your doctor for a mild muscle relaxant such as carisprodol (Soma). I have found that to be somewhat helpful when muscle tension is causing the pain. I hope you find relief soon!
Another good possibility might be warm water exercise if there is an aqua therapy pool in your area, or spending time in a jacuzzi might even help a little. If none of those suggestions are an option for you, you could also consider asking your doctor for a mild muscle relaxant such as carisprodol (Soma). I have found that to be somewhat helpful when muscle tension is causing the pain. I hope you find relief soon!
As far as I am concerned it is the Neupogen. Next week my Procrit will be increased to 60,00o units as I just can't make it past 9.1 which is OK by me but my doctor thinks I should be on 800 mg of Riba when this happens...I do not think so. I am supposed to administer another 300 mcg of Nuepogen in a dew hours and I am dreading it. In fact I may not....
I was chugging along just fine on the same meds you are taking until my first Neupogen shot last Sunday. Furthermore, out of no where Reynaud's symptoms cropped up. I had zero tolerance to any kind of cold and at night I would wake up with my arms in paid and my hands on fire. I literally get the red hands with the white fingertips you see in images.
I actually had access to both Marinol (dronabinol) & Natural Cannabis but I don't equate the feelings either evoke with healing so I was not a receptive candidate for this type of treatment. Maybe it is because I am a recovering addict. I don't know. Still, both having tremendous healing properties and I encourage you pursue this if is a viable option. I have other friends with other debilitating conditions who respond well to that type of pain management
Here is an interesting article that contrasts the two (Ha it should not surprise you very few people end up wanting the Marinol!):
http://norml.org/component/zoo/category/marinol-vs-natural-cannabis
(Ha - I would have accepted an opioid though! Alas that was not an option either.
_____________
My husband kept encouraging me to get a massage but I have been reading a lot and researching these things and I am not quite ready to go that route. I noticed over the past few weeks my habits have gradually changed. I am more sedentary. I quit working out on the weights. I get tired more easy so I stopped doing many of the things I enjoy. Namely, working in the little forested areas around me, trying to landscape, weeding and doing other things outside.
I implemented the stretches and exercises I found related to the scalenes and that has helped my arms tremendously. I don't know if I continued trying do the same workload without the physical strength & stamina or if I just gave in. But you are right, in just reading about the pressure points and techniques that ease our kind of pain, it is easy to imagine their are lots of acupuncturists & massage therapists who do not quite know how to get the job done. The best ones are often found through referral. Asking around. Everywhere.
Activity is crucial and helps during the day but at night the discomfort can sometimes be unreal. I went from night sweats to its polar opposite in the span of a week so I intuitively felt like there had to be something I could do to better my situation. In my case physical activity and looking forward to something is crucial. I thought maybe I needed to go out more but when my husband suggested a 'date night,' I was like, "You mean with each other?" (Har)
I realise this is not much help Reva but there has to be some kind of connection between keeping our spirits up and healing. I cannot top the the excellent, insightful suggestions you have received thus far so I thought I would offer that physical activity and renewing (or adopting) an interest in something that takes you out of your self might help.
Trust me, at week 34 I have not perfected any of these things and it seems like there is something new every week. We need one another to maintain the will to hang in there. To make it by learning how others who were equally miserable (and in pain) made it.
Don't stop trying to figure out how to make this work and be sure to post any revelations you may discover :) :) . As someone in the same boat I encourage you to hang in there as I know how trying this is.
I was chugging along just fine on the same meds you are taking until my first Neupogen shot last Sunday. Furthermore, out of no where Reynaud's symptoms cropped up. I had zero tolerance to any kind of cold and at night I would wake up with my arms in paid and my hands on fire. I literally get the red hands with the white fingertips you see in images.
I actually had access to both Marinol (dronabinol) & Natural Cannabis but I don't equate the feelings either evoke with healing so I was not a receptive candidate for this type of treatment. Maybe it is because I am a recovering addict. I don't know. Still, both having tremendous healing properties and I encourage you pursue this if is a viable option. I have other friends with other debilitating conditions who respond well to that type of pain management
Here is an interesting article that contrasts the two (Ha it should not surprise you very few people end up wanting the Marinol!):
http://norml.org/component/zoo/category/marinol-vs-natural-cannabis
(Ha - I would have accepted an opioid though! Alas that was not an option either.
_____________
My husband kept encouraging me to get a massage but I have been reading a lot and researching these things and I am not quite ready to go that route. I noticed over the past few weeks my habits have gradually changed. I am more sedentary. I quit working out on the weights. I get tired more easy so I stopped doing many of the things I enjoy. Namely, working in the little forested areas around me, trying to landscape, weeding and doing other things outside.
I implemented the stretches and exercises I found related to the scalenes and that has helped my arms tremendously. I don't know if I continued trying do the same workload without the physical strength & stamina or if I just gave in. But you are right, in just reading about the pressure points and techniques that ease our kind of pain, it is easy to imagine their are lots of acupuncturists & massage therapists who do not quite know how to get the job done. The best ones are often found through referral. Asking around. Everywhere.
Activity is crucial and helps during the day but at night the discomfort can sometimes be unreal. I went from night sweats to its polar opposite in the span of a week so I intuitively felt like there had to be something I could do to better my situation. In my case physical activity and looking forward to something is crucial. I thought maybe I needed to go out more but when my husband suggested a 'date night,' I was like, "You mean with each other?" (Har)
I realise this is not much help Reva but there has to be some kind of connection between keeping our spirits up and healing. I cannot top the the excellent, insightful suggestions you have received thus far so I thought I would offer that physical activity and renewing (or adopting) an interest in something that takes you out of your self might help.
Trust me, at week 34 I have not perfected any of these things and it seems like there is something new every week. We need one another to maintain the will to hang in there. To make it by learning how others who were equally miserable (and in pain) made it.
Don't stop trying to figure out how to make this work and be sure to post any revelations you may discover :) :) . As someone in the same boat I encourage you to hang in there as I know how trying this is.
I would try the brownie method if I knew where to get some.
I'll have to investigate. I'll try anything.
Thanks, Reva
I'll have to investigate. I'll try anything.
Thanks, Reva
At first I also thought it was the virus. My doctor kept saying it was not, but of course I wanted to believe he was incorrect.
During the time I was taking Incivek the pain was basically gone so that reinforced my belief that it was the Hep C causing the problem. Well, I guess my doctor was right. The real problem is the pain is now worse than it has ever been.
I was told before treatment that my pain might worsen, but of course I didn't believe it would happen. Then when I had done more than 20 weeks with very little pain I sure thought it was gone. Apparently, it was my wishgul thinking that allowed me to believe the pain would leave with tx.
Like you my pain is less when I'm up moving, but that is sometimes
difficult because of my other sx.
Like you I've pretty much decided I'll try a little exercise maybe that will help.
Thanks, Reva
During the time I was taking Incivek the pain was basically gone so that reinforced my belief that it was the Hep C causing the problem. Well, I guess my doctor was right. The real problem is the pain is now worse than it has ever been.
I was told before treatment that my pain might worsen, but of course I didn't believe it would happen. Then when I had done more than 20 weeks with very little pain I sure thought it was gone. Apparently, it was my wishgul thinking that allowed me to believe the pain would leave with tx.
Like you my pain is less when I'm up moving, but that is sometimes
difficult because of my other sx.
Like you I've pretty much decided I'll try a little exercise maybe that will help.
Thanks, Reva
I'm with you guys. I have degenerative disc disease, during treatment my pain was gone. It was wonderful, then three weeks before ending treatment, it all came back to haunt me. I really thought that iy was HCV that actually caused my pain and thought I would be pain free forever. Hah!I have gone to chiro for years and it does help. My pain also seems to subside when I'm up doing stuff and even when I am walking or on the elliptical. Hoping being able to exercise more will also strengthen my muscles enough to stabalize my back. I just contacted an accupuncturist as well, hopefully this will go well. Good luck Reva, I do hope you get relief fast.
Deep tissue massage, accupressure and/ or accupuncture can help.
The problem with muscle pain is that it causes tension, then we tense up because of the pain and it only gets worse.
I know this solution isn't available for everyone. When I had horrid intense back pain during tx, a friend gave me a cannabis brownie. I ate three, fell asleep and could barely get out of bed in the morning BUT all the muscle pain was gone. It made me a believer. I did a search on firbomyalgia and cannabis and it's highly recommended. Eating it, I think woks best of muscle pain. I didn't like how it made me feel mentally but I it was much better than going on in pain.
The problem with muscle pain is that it causes tension, then we tense up because of the pain and it only gets worse.
I know this solution isn't available for everyone. When I had horrid intense back pain during tx, a friend gave me a cannabis brownie. I ate three, fell asleep and could barely get out of bed in the morning BUT all the muscle pain was gone. It made me a believer. I did a search on firbomyalgia and cannabis and it's highly recommended. Eating it, I think woks best of muscle pain. I didn't like how it made me feel mentally but I it was much better than going on in pain.
I have had acupuncture in the past. I will consider that as a possibilty
again. The problem I have is getting the right person to administer the
treatment, and getting there is also a problem. I have almost no support system to help me get to an appointment.
Thanks for the suggestion. I will give acupuncture consideration.
Reva
again. The problem I have is getting the right person to administer the
treatment, and getting there is also a problem. I have almost no support system to help me get to an appointment.
Thanks for the suggestion. I will give acupuncture consideration.
Reva
Sorry to hear of our back pain. I, too, developed agonizing pain in my back during treatment. At first, I tried Tiger Balm which soothed the muscles somewhat but didn't last long enough. My best relief came from the chiropractor and my acupuncturist. Would make them my first resort next time!
Hope you find what works for you. Back pain is crummy!
Hope you find what works for you. Back pain is crummy!
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Back to the point. With three doses a week (to me) it means you are virtually in a constant state of that feeling I had the first two days. This is all to help us fight off an infection we could possibly get.
I was going to ask about a script for an antibiotic when I talked to my doctor but I blew it off. I admit Neupogen is one med I have not read as extensively about as I have the others. Like OH says I really need to understand the kind of odds we are looking at when it comes to infection.
**We finally got a new mower and it starts the first time every time. I did not realize how much energy I was exerting just to operate the old mower. I kept thinking I am getting old or out of shape. Then I used the new mower and it was effortless - and the grass was thicker than usual. It mulches like crazy. I quite lazily did not police the area and easily mowed half an acre (and over at least 50 dog bones and a few fire ant hills).
Hang in there Reva!!!