pain in legs

[Clyde4360]

Hey I was just wondering if anyone else that is on the 3 meds has bad pain in their thighs and shins?
I took my 4 th shot Friday. Last night for the first time I was throwing up I think I'm going to be better but it is now hitting me a day later anyone else having the same symptoms? Sometimes I can barely walk when I get up. Hep C has affected my kidneys I'm in stage 3 kidney failure and have cryoglobiua anemia I would like to hear from others that their kidneys have been affected Doc says the meds are stronger for me cause the kidneys aren't working right.
I hope I hear from somebody that has the same issues so I can see how they are doing. Thanks it helps to go on here and talk about it. Clyde

[Dee1956]

Hi I just finished tripled tx, I have shin pains, not sure what it is
I had cryoglobulinemia (SP?) but hopefully getting to UND then SVR will kill it along with HCV
Just wanted to answer your question, yes I had it
Take care
D

[alagirl]

Oh hey, I'm great now.  I SVR'd over three years ago ;)  I really don't get the pain anymore so it really was tx related with me.  All of my tx related pain issues resolved either immediately after treatment, or over time afterwards.  

Yes, frequently people give themselves the procrit.  It's very easy to do.  With the kidney issues, I would talk to your doc about following your red blood cell count closely and to perhaps get you preauthorized for procrit if possible because people with kidney issues frequently have issues with anemia, even without adding treatment drugs.  

Some people notice side effects the first couple shots or so but nothing at all like the treatment drugs.  In fact, I think many don't even notice because it's so little compared to the treatment drugs.

[Clyde4360]

Sorry about your pain this stuff really *****, they are checking my levels every 2 weeks RBC WBC HGB etc are started to fall pretty fast I see the Gastro and Nephro guy Mon and Tues. I see people talk about Procrit I have fiqured out this helps your counts do you give it to yourself and are there side effects from that too?

Hang in there I feel your pain thanks so much for your info  it helps alot. Take care of your self!!

[spectda]

"other one is that melts under your tongue for nausea" = Zofran (ondansetron)

[alagirl]

Clyde, sometimes it can take a while for people to get back to you.  I didn't answer because I didn't do the triple.  Probably a lot fewer people have done the triple.  Nevertheless, I had severe leg pain, in my thighs, shins, knees and hips mostly.  I did vomit after the shots of peg sometimes.  I also was taking large amounts of procrit, 40k units 2x weekly.  I think that added to the pain.  Plus I was very anemic and on blood transfusions.  I have high bp too and some kidney dysfunction but not from the hepc (I only had hepc for about 12 weeks tops - I treated acutely).  I don't know if that affects anything.  They wanted me to stay away from ibuprofen.  They did let me take heavy narcotics.  What I did was find a pain management clinic near me and I went there because the tx doctors are a little stingy about managing pain and I hurt so bad I couldn't have made it through without the pain medication.  I already had migraines, so I just go that one doctor to manage all my pain meds instead of having all of these different doctors giving me different things.  He also put me on high doses of lyrica and that helped my legs a lot.  I also took phenergan and whatever the other one is that melts under your tongue for nausea (somebody here can tell you, I've forgotten).  With kidney probs, you need to watch your red blood cell count closely, you may need procrit sooner than most.

[Clyde4360]

Thanks for all the info I do have proturia and high blood pressure the neph guy and the Gastro guy said everything I have stems back to the hep c. My kidneys were holding their own for the past year but these meds are huring them worse. I see the Nephro guy tomorrow to see if I can still contunie. As far as we can tell I have had this monster since I was very young I think from getting a tat in Brooklyn some little hole in the wall 40 yeras ago. I didn't know  unitl a year ago I never went for yearly exams and when I did go they never checked for hep C until my blood pressure got so high they sent me to a Nephro guy and he tested for it.

Thanks to everyone for all the info it helps to hear from you all. Take care!!

[spectda]

I got pretty bad pain in my back, hips and legs during tx on and off. It sometimes made it tough to sleep. I stacked pillows, used tylenol and heating pads and did my best with it. I don't know if it's the same experience your having though.
-Dave

[spectda]

http://www.faetc.org/hepatitis/patient/cryoglobulinemia.pdf
"Treatment
The approach to treating HCV related cryoglobulinemia is to treat the underlying cause, hepatitis C. Prior to pegylated interferon and ribavirin therapy, interferon monotherapy was used with very little effectiveness. However, studies have found that the use of pegylated interferon plus ribavirin has produced better results especially in patients who achieve a sustained virological response. Cryoglobulin disappearance, improvement in kidney response and complete or partial cryoglobulinemia syndrome response has been found in some people successfully treated with pegylated interferon therapy. It should be noted that interferon may exacerbate some autoimmune disorders so monitoring for these potential problems during interferon/ribavirin treatment is needed.

The high prevalence of HCV in people with cryoglobulinemia leads us to believe that there is a direct link between HCV and cryoglobulinemia. In fact, one study found that 95% of patients with cryoglobulinemia had evidence of the hepatitis C virus or HCV antibodies. Cryoglobulinemia is also associated with hepatitis B infection and other liver disorders, but to a much lesser extent. Factors that strongly correlate with an increased risk for HCV-related cryoglobulinemia include the presence cirrhosis, HCV infection over many years or decades, and female gender.
In people with hepatitis C only about 10% of people with cryoglobulinemia show signs or symptoms of this condition. The other 90% of people with HCV and cryoglobulinemia have no symptoms or any of the blood or organ disorders associated with the condition.
Symptoms
The people with symptomatic hepatitis C-related cryoglobulinemia can have ongoing problems that can cause many symptoms and disorders. The most common symptoms and disorders associated with the condition include:
• Vasculitis: inflammation of the small blood vessels of the skin, kidneys, gastrointestinal tract and other organs of the body. It can also cause red or purple blotching skin (especially on the lower extremities of the body), rashes, sores, and ulcers
• Renal (kidney) disease: caused by the deposition of proteins in the kidney. Symptoms include blood and proteins in the urine
• Arthralgias and arthritis: pain and/or inflammation in the joints • Itching: mild to severe • Fatigue: mild to severe • Pain: mild to severe
• Lymph node enlargement: swollen gland-like tissue in the lymphatic vessels containing cells that become lymphocytes (white blood cells)
• Peripheral neuropathy: numbness and tingling in the hands, legs and feet that is due to decreased blood and/or inflammation of the peripheral nerves.
• Stomach pain"

[spectda]

Cryoglobulinemia can damage your kidneys. I hope you are seeing a good nephrologist and hepatologist. If the cryo is related to hep c successful treatment may very well also resolve the cryo, but you may already have irreversible kidney damage.

I have (or had) cryo and so do a few others on the board, but I haven't heard of anyone recently who had kidney damage although one person mentioned that it may have cause them neurological damage. Many people with cryo do not know it and don't have symptoms.

Probably the reason you aren't getting responses is because most people have not had had a similar experience and don't know what to say, and because the weekends are slow, I just got home from walking and read your post. It's definitely not because you are new. We are just other sick people here, you are part of the club and don't have to be here a long time. It's understandable that you are anxious, but people are not ignoring you.
I hope the best for you,
-Dave

[lapis]

I finished triple tx in 2009.  I don't have cryo or kidney disease.  I do remember having leg pains at times.  My doc told me to take acetaminophen and that did help.  Since your situation is more complicated, I agree with the others, you need to talk to your doc and see what you can take to help with the pain.  If your nausea and vomiting continues there may be something you can take for the nausea.  Sorry you're having such a hard time.  Don't take it personally when you don't get an answer right away.  You said you wanted to hear from people who "have the same issues" so that may limit the replies you get from people who don't have the same issues.  Good luck to you.  Lapis

[researchmonkey326]

I can't help with the kidney question and I have never thrown up from the shots. But 23 weeks in I sometimes still feel bad the day after. Like today- it was difficult for me to manage a little grocery shopping and I am now done for the day. Hopefully someone will chime in with wisdom about the kidney problem. Good luck

[hrsepwrguy]

I had leg pain first 24 hrs after first shot doc told me to take ibuprofen, I don't think you should take ibuprofen with kidney problems something you would need to talk to a doc or pharmacy about, any harsh side effects should be brought to your doctors attention as they know your whole situation and problems you have other than hep c.

[Boobert]

Clyde give it time it's the weekend and it gets a little slow. I haven't treated yet so I can't answer but have patience and you will receive replys.