side effect

[shocked60]

are the side effects any less if your viral load is low and minimal damage? I have been having anxiety problems over this and wake up shaking. I am now on anxiety meds and zoloft to even me out before I start meds in 4 days. I can't seem to get over fearing the worst

[pooh55811]

I did not experience the lymph node problem but apparently some people do develop lymph node enlargement on Hep C Tx. Here are some articles that I found about the subject.


"In total, 20 (9.75%) patients in control or 10/95 (10.52%) patients treated within clinical trials, were recorded to have lymphadenopathy during combination antiviral therapy for chronic hepatitis C. The most common site of lymphadenopathy was inguinal region in 08 (40%), followed by cervical region in 07 (35%) patients. .....The average time for onset of lymphadenopathy during antiviral therapy for chronic hepatitis C was 21 weeks.
CONCLUSION:
In conclusion, lymphadenopathy at various sites distant from perihepatic region appears to be higher than that documented in previous studies. In majority of our patients, the lymphadenopathy was reactive and resolved upon cessation of antiviral therapy."

http://www.ncbi.nlm.nih.gov/pubmed/22356032


"In conclusion, we report that LNE at various sites distant from the liver hilum was observed in up to 4% of our patients during treatment of CHC
with PEG and RIBA. While being reactive in nature and resolving upon cessation of therapy in the majority of patients,de novo LNE may be due to
serious disease and warrants further investigations"

http://www.smw.ch/docs/pdf200x/2006/03/smw-11053.PDF

[shocked60]

Well I guess I felt good for too long as I now have had enlarged lymph nodes in groin which had to be biopsied. Just about when I was so happy and about to finish up on tx.  This huge worry has to nock me to my knees again. I am sooo worried and have to wait a week for result. Has anybody else experienced this lymph node problem.

[ceanothus]

So glad to hear that your facial swelling went down and you didn't have to stop tx for that. I had a lot of skin issues throughout tx and for at least 2-3 weeks beyond it. My dermatologist had several simple suggestions which helped me a bit: when showering, use tepid water rather than hot, and get rid of any soaps that have deodorant or antibacterial ingredients. I switched to one with natural ingredients and lots of shea butter (my choice has rose petals and smells fabulous too), and my skin was much happier with that. I also slathered on the moisturizer (Aveeno works well for me) all over while still slightly moist from my shower, before dabbing a little steroid cream onto the most reactive spots. Congratulations on your great progress to date, and keep on hanging in there! You have very good odds for SVR, and I hope you can get through the rest of tx without too many new problems. Best wishes!

[shocked60]

Thanks. Have been to ER. They gave me benadryl. I have had ny heart checked. It was okay. I have atarax, but I did not think it helped the itching too much. Dr.right now is keeping his eye on my swollen glands. Swelling in face has gone down but ankles still want to swell. Not as much. I am taking a shot a week for the anemia. my Dr said he only wanted to give me 2000 instead of 4000 which GI prescribed. I am now feeling better but would really like my skin to stop drying up and itching. 2 more months. You really get a new understanding for what some people must endure to keep their health. Good luck everybody and hang in there. This website is wonderful!

[BoceprevirGal]

  Congrats on the 12 wk Und. How is the swelling?  I was chilly when I Treated, from the anemia, but didn't swell.  I think you should see your Treatment Doctor about it right away. Did your last Labs(12 week) indicate specific problems, such as low hgb or rapidly dropping platelets, and what was your AST and ALT.  
    If they have lowered your Riba already, then you prob have hemolytic anemia and that causes the chilled feeling.  I remember one week, even my face and the bone in my skull, felt chilled.
   I hade an itchy rash that made my face feel swollen, and welts on my torso. But my face never got outwardly swollen, and as soon as I felt the feeling, I started taking anti-itch pills, called Atarax (hydroxyzine) about every 6 hrs, very regularly.
   Lots of us have just gone right into th E.R. with our side effects, on this Treatment, dont hesitate to do so, if you feel worse.

[pooh55811]

Congratulations on being UND at 12 weeks.

[shocked60]

UND again at 12 weeks. Still dealing with itchy rash. Hair falling out as well. The price we have to pay. I pray not to relapse.

[shocked60]

Okay advise taken and thank you. Called Dr today. This tx is beating me up. I feel like I 3 steps up and 4 down. Okay enough crying this too will pass. Everybody keep fighting. Lets make this virus extinct

[pooh55811]

PS: If it was me, I would be concerned about feeling chilled all of the time. That is all the more reason to get examined and to get to the cause of the swelling.

[pooh55811]

Swollen ankles and swollen face are not listed as specific side effects of the drugs (at least not that I can find). However, the swollen ankles and face could be a result of one of the listed side effects of the drug or to some disease process that the drugs have caused.

Many disease processes can cause swollen ankles (cardiac problems, kidney problems, liver problems, to name a few). The same is true for the swollen face, although the underlying disease process may be different.

I did have swollen ankles and feet around weeks 8-10. At that time I was extremely ill with nausea, bloating, rapid heart rate of 180 per min., and several other side effects. Once I got the nausea under control, the swollen ankles disappeared and never returned. I blame them on some physiological process related to the nausea and bloating.  At the time I was seeing a cardiologist because I also had other symptoms, very rapid heart rate of 180 per minute and other symptoms. In my opinion, they were all related and they all disappeared after getting on Zofran for the nausea.

If it was me, I would call my doctor and make an urgent appt. with him/her. Your swollen ankles and face are being caused by some health issue and you need to find out what is causing them. The cause may be serious or the cause may not be serious. However, if it was me, I would get an exam and some tests to find out what is causing them.

Hopefully your doctor will do some tests to try to figure out the cause and treatment before yanking you off the drugs. If this is out of his/her realm of expertise, then he/she should refer you (on a very urgent basis) to someone who does know more about the symptoms and underlying disease possibilities.

Best of luck.

[shocked60]

New side effect. Ankels and face are swollen after not having taken invivek for 5 days. Almost afraid to call dr incase he wants to stop the rest of the meds. Is swollen ankles and face part os side effects? I am also chilled all the time and I live in south FL.

[shocked60]

I am continuing on with riba and shots, but he said my rash was severe and he should have pulled me 2 weeks ago. I have swollen glands and getting really weak and winded. From reading other peoples posts, it seems I am not alone or unusual. I worked so hard at this, and don't want to risk anything.

[hrsepwrguy]

I shouldn't say were because you haven't reached wk 12 yet, if you are still UND at wk 12 the eRVR stats will apply

[hrsepwrguy]

For eRVR patients, which you were

Rates of SVR24 for subjects in the T/PR groups who had eRVR and received 24 weeks treatment ranged from 87% to 92%

[hrsepwrguy]

Vertex did a trial with an 8 week incivek/telaprevir arm here are the results

Study 108

6.2.1.3 Duration of Treatment

The telaprevir regimens were 24 or 48 weeks in duration, with telaprevir given in combination with Peg-IFN and RBV for either the first 8 weeks (T8/PR) or the first 12 weeks (T12/PR). For subjects who had undetectable HCV RNA at Week 4 and Week 12 (extended rapid virologic response [eRVR]), Peg-IFN and RBV were dosed for a total of 24 weeks. For subjects who did not achieve eRVR, Peg-IFN and RBV were dosed for a total of 48 weeks.

6.2.1.7 Efficacy Results
Significantly more subjects who received telaprevir had SVR24 compared with subjects in the no-telaprevir group (Figure 11). SVR rates were 72% in the T8/PR group, 79% in the T12/PR group, and 46% in the Pbo/PR48 group.

http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252562

[shocked60]

Dr. pulling me off incivek today as my rash is severe. I will be 3 weeks short. I was und at 4 weeks. How much does this lower my chances for svr

[quayle]

Don't be afraid of fear,it disguises it'self in worry danger,everyone has fear,so your very normal,you just need to learn coping exercises,force your self to close your eye's and just concentate your mind(as much as you can) on your breathing,and keep repeating even though your fear will still come say relax relax,ti does work but I've had to force myself many times to do it,hope you cope.

[shocked60]

Thank you! This is really tough. If I was not so far along and UND at 4 weeks, I am not sure I could have gone through this. Go to see Dr on Tues. for 8 week blood work. My energy level has drooped to 0 too. I guess this is good since I have now had all the side effect so no more surprises I hope. my skin where the rash is clearing, is baby soft. They did not tell mw I would get a free dermabration when I started this.God Bless everybody out there going through this. Hope they work hard on the other tx

[lisa108]

thank you for your positive message !!

[Advocate1955]

My husband had the moderate rash with Incivek, but there were times it seemed to be bordering on severe.  He took Hydroxyzine and used Triamcinolone ointment.  He used Eucerin body wash in the shower, took cooler showers, patted his skin dry, used Eucerin moisturizer on his skin after the shower, sometimes stood in front of the open freezer door, sometimes stood outside in the cool night air, and sometimes we put tea tree oil on the little blisters that formed (there were a few on his back).
Good luck with the rash.

[pooh55811]

If you need the cream, then what are they complaining about. The pharmacy should not be complaining. That is not their job. They are not diagnosing your problem or ordering your treatment. They are filling a prescription.

A person is not supposed to pile it on, but sometimes a person has no choice. Most drug induced rashes will go away after the drug is stopped. But we have to take these meds or we will likely fail treatment. The drug that is causing the rash is still in our system. So, we have to control that rash or be taken off treatment.

To put it in perspective, one guy here was using a pound of steroid cream a week and was getting it in jars. He had to go off Tx. The rash eventually cleared but it took weeks.
The goal here is to get the rash under control so a person can continue Tx. There is no point in using so little cream that the rash continues to spread.
At 5'10" you probably need a lot. I am 5'7" and the tubes I get are big tubes.

The Fluocinonide did help me and eventually the rash would clear . However, it was the Hydroxyzine 50 mg every 6 hours that actually got it under control.

My experience with Tx over the past year has left me very annoyed with the incompetence of docs and other staff, especially when it comes to side effects, and it has transformed me into a very informed and assertive person as far as medical care is concerned.

[shocked60]

Checked the Incivek site and I would say I am moderate. Thank you. Great help. Also checked the last pics yo sent and that is about what I look like. I believe my legs have more, but my injection sites a the size of a golfball and red from 3 weeks ago. I am seeing a derm. He said it was not SJS. My Pharmecy complained I had used too much clobtasol cream. I am 5'10. How long can a tube last when you have it everywhere? So I backed of a little and that is when I seemed to get worse. Mostly my neck and face seemed to be on fire today. Thanks Pooh!

[pooh55811]

Neither Claritan nor Zyrtec did anything for my rash and/or itching. I may as well have been taking M&Ms. I know they help some people, but they won't help any of us who have/had rashes all over the place.

Yes, I know the "sunburn" well. My docs completely missed it. They thought it was my normal skin coloring, LOL. I said to them, "You know, I don't normally have red skin and I don't normally have bumpy skin. This is all part of the drug reaction."

Keep a good eye those rashes. If you are not seeing a dermatologist, I would recommend an urgent appointment with one, sometime this week.

Also, keep in mind, the rash may get better after finishing Incivek, but it may not. Mine did not get better. It got worse. I have had some sort of rash in varying degrees since last Dec. 1st. So that is 11 months. I have been off Tx now for 12 weeks and I still have some rash, although I have finally been able to cut down to 3-5 Hydroxyzine a day instead of 8.

I am hoping yours gets better soon.

Take a look at these photos on LookingForward's profile page. She had a terrible rash and had to have steroid injections.

http://www.medhelp.org/personal_pages/user/1995824

[shocked60]

I am using Clobetasol .05% cream and I am on hydroxyzine 25 mg , I was only taking the hydrox in evening as nt to gettired. My dr said to take claritin in day but I have started to take hydrox in day also. I seemed to be getting better but after my weekly shot, it seemed worse the next day. my back seems to be clearing up. Looks like Iam sunburned. My legs look scary. So many red spots I can't keep track Thank you everybody for all your great help. So comforting to hear this too will end  I hope.
God Bless everyone that has to go through this!!!