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Avatar universal

Headaches during treatment

Hi all - I have enjoyed reading these posts and have learned a lot - so good to know I am not alone....  I am 4/48 wks into treatment (Pegasus/Ribavirin).  I am having headaches, sometimes severe, in the afternoons. I am drinking lots of water, and going home from work early...  Does anyone have any ideas on how to prevent/manage these ? I am a newbie at this, and any advice is appreciated!!!!
thanks
Sammy
15 Responses
Avatar universal
Hi,,,Sorry to hear you are experiencing the bad headaches.  I am at end of tx but for some reason the first couple of months of my tx,,,,the headaches seemed worse then.  They then went away and I didn't get anymore until about 7th month for few weeks and then that has been it.  I did get a prescription from my dr for migraines but seemed like if I took a couple of ibuprofen,,,that would usually kick in and relieve it some.  Keep drinking the water and also see if you are eating anything that could trigger them more so.  Good Luck and hope you get to feeling better!
Avatar universal
My doctor gave me a nasal spray called Stadol. It's very fast and very effective, but also very addictive. One spray in each nostril always worked. Tylenol and Ibupropen did nothing for the headaches, and this spray, since it takes so little, was better for my liver, which is cirrhotic. Dr.s hesitate w/ it since it is so addictive, but one bottle is all it took to get me through 24 weeks and I had alot of headaches.   Joni
Avatar universal
I had really bad headaches which turned into migraines; which would last forever.  About wk 9, my doc prescribed Imitrex which did wonders for me.  I believe the headaches were mainly what was keeping me so physically sick.  Once I got rid of them, the rest seemed like a cakewalk.  If you think your headaches are migraines, check with your dr on what you can take.  The Imitrex is expensive and will not work unless it's a migraine.

Good luck with continuing tx and taking care of the headaches.
Avatar universal
Thanks everyone!!! I will look into all your advice.  I am type 1a, and in for a long haul.... this forum is really important, I realize no one can understand what we are going through unless they are going through it also... good luck and happy new year to all of us and to clearing this Hepc!!!!!
sammy
Avatar universal
There's a good chance that the entire thread below will be removed because of the advertisement that was posted there. So I thought it best to try and answer your question here.

I am going to go 48 weeks and not extend beyond. Stats on me are/were: male, 1a, vl=2,400,000, stage 1/grade1, ALT=142, age 45 (when starting), low BMI. I was considering extending early on and wanted to find all I could related to it. At the time, my thoughts on why I might extend were: having a high vl (anything over 2,000,000 is considered high) and having failed tx (via mono interferon back in 1993) once before. But having asked questions and spoken with doctors, I learned that my tx with the mono interferon was suboptimal and that I never really had a chance to clear anyway, given that they lowered my dosage from 3 million units to 2 million due to low white counts (no Neupogen back then). So, in that respect I was considered 'treatment naive' when it came to the peg-interferon/riba tx. As far as the my high vl count, I've come to the line of thinking that a vl of 2.4 million is really not 'high', per say. I think it's way too broad and general to take anyone who's vl is anywhere from 2 million all the way up to infinity and place them in the same category. So, I would put myself in a 'mid-level' vl. Given all that, my stats going into tx don't have too many negative predictors. By week #2 my ALT had normalized. By week #12 my vl was undetectable. Based upon these positive factors, I decided not to extend. If I had any more negative factors going in (i.e. - greater degree of liver damage, higher vl, etc.) or had not cleared by week 12, I would have made the decision to extend. But I always keep in mind the power of the drugs we are taking - and the potential long-term damage that can come with them. Cumulatively between the mono tx and my current tx, I now have had 18 months worth of time on interferon. As with so many things associtated with Hep C and tx - it's alot of guesswork, hope and prayer as to what may or may not work, as well as what to do in any particular case.

Am I a proponet of extended tx? Very much so. And if I were to fail to achieve SVR this go 'round and end up having doing it again at some point, first thing I'd do would be to make sure that my doc and I were on the same page about extended tx. And also that we'd agree on monitoring (i.e. - doing early PCR testing (weeks 2, 4 etc.) to be sure that I would be  responding properly. And we'd have to agree to make sure to try and keep me at full dosage level the entire way.

At this point in time, assuming that my week #48 testing comes back clear (I get it drawn tomorrow), my best guess is that my odds of achieving SVR stand somewhere in the 80-85% range. This is very much a guess on my part based upon a couple of studies I have seen, my factors going in, my being undetectable at week #12, some speculating about various factors realted to patients within the studies, and about my level of adhearance in taking the meds.


TnHepGuy
Avatar universal
Is the 12 wk PCR the last one you had?  Would the doctor be willing to order one now for you to put your mind at ease?  You gotta love these twits who say things like "don't worry about it". What a ridiculous answer to your concerns.
My ALT/AST went up about 9 months into tx when I became severely anemic and went on Procrit (my thyroid crashed then, too).  I don't know which (if either) issue pushed them up.  They normalized once the anemia and thyroid were under control and my 48 wk and 60 wk PCRs still showed undetectable.  I understand your fear of quitting too soon.  I had to push hard to extend ~ but I was not clear at 12 weeks......and you were.
ambush
Avatar universal
thanks for the detailed response and best of luck to you -- since you seem so knowledgeable and level-headed about the whole extension issue, let me ask you what'd you'd do if you were in my position, if you don't mind -- anyone else can feel free to chime in as well -- here are my stats:

age 47, male, geno 1, 185 pounds, chronic hep c for 24 years, liver biopsy in '03 showed portal fibrosis with knodell's score of 8 (1,3,3,1), now on week 37/48 of pegasys 180/riba 1200.   didn't have baseline PCR performed for some reason, NP said one taken in '03 would suffice (VL showed 58,600 at that time).    ALT at beginning of tx was 108, fell to 39 at week 4.    week 4 PCR was undetectable but test was old-fashioned (the one that only measures to "less than 650 IU/ml").    week 8 on same old-school test was undectable with ALT around 38 still.   week 12 brought a more sensitive PCR which measures to "less than 25" and was negative again.    ALt began rising steadily at week 16 right through to the present, and now sits over 100.    the increasing ALT concerns me although the NP says "don't worry about it."

do you think i should extend to 60-72 weeks?  it would involve switching docs and medical facilities (the folks i'm seeing now don't believe in extension unless there is a co-infection with B or HIV or something else) and a lot of hassle, and i'm not sure i coud even arrange it, but i don't want to relapse.....what do you make of the significance of the elevating ALT despite undetectable virus in the blood?    could it be that the meds are largely clearing most of the virus from the blood while the hepc is remaining quite active inside the liver, causing inflammation and replicating like mad -- why else would ALT be on an upward march?   i suppose my fear is that if i remove the med pressure too early, the remaining viral particles will surge and spill back over into the blood and i'll relapse in short order.   am i being paranoid?    rising ALT can't be a positive sign, but do you think it's a necessarily negative one?   i don't have much faith in the NP simply saying "don't worry about it, we can't know exactly what it means."   i realize it's not an subject that's fully understood, but i wonder if it's predictive of ultimate treatment failure in any way?   thanks again for your thoughts, and to anyone else who responds,

stan
Avatar universal
hi -- i got another PCR at 24 weeks (still negative) and will get another this week (end of week 37).   i'd be surprised if there was a measurable "viral breakthrough" with the pressure from the meds continuing; what concerns me is what's going on in the liver regarding the virus -- i guess i have a theory that despite the virus being largely eliminated from the blood and thus getting negative PCRs, it must be still kicking up a ruckus in the liver -- thus the high ALT indicating ongoing inflammation.    of course that's just my theory -- but i don't know what else would cause the persistent ALT elevation.   i am anemic, but i don't know if it's severe (hemoglobin has dropped from 15 to 10) and i'm hypothyroid too but i didn't think those would cause increase ALT.    did your doctor actually mention those as a possible cause of your temporary ALT rise?   the people i'm seeing ruled them out and said they were unrelated.    plus the ALT began to rise well before the anemia came on, and the thyroid is now being normalized with meds, yet the ALT keeps rising.   i don't think there's any relation, but please let me know what your doc said.   thanks,

stan
Avatar universal
You seem to not have too many negative factors going into tx. Your bx score shows a mild level of liver damage, with moderate inflamation. And your starting vl is rather low.

As 'ambush' has asked, have you had any PCR's done since week #12? If you haven't had one since then and your ALT's have continued upward, you may want to push your doc to get one done now. Tell them of your concerns and mention that you want to rule out viral breakthrough. If they refuse to order one through them, ask them to write you a rx for one and take it over to a <a href="http://www.questdiagnostics.com/hcp/psc/jsp/hcp_psc_index.jsp">Quest Diagnostics Lab</a> in your area. If you ended up having to pay out-of-pocket, I believe the test runs in the $300 - $400 range. It is possible that the interferon (or any other medications you take daily) could be contributing to the rise in ALT's. But if I were in your shoes I would want to rule out the possibility that the virus is now detectable in serum. If the virus has broken through, then it really makes no sense at this stage of your tx to keep you on the medication week-after-week - all the way to week #48. And extension would be a moot point then, too.

I think at this stage, it's not a question of should you extend or not. It's more of a question of ruling out breakthrough via a PCR.


May God's blessings and mercy be upon you.


TnHepGuy
Avatar universal
Hi Stan ~ No, my doctor never mentioned anemia or hypothyroidism as a possible cause for the rise in liver enzyme levels.  He actually was one of those "don't worry about it" twits earlier mentioned.  My hemoglobin dropped to 7 point something before he'd listen to me that I couldn't walk across a room alone. My TSH was up to 77+ before he'd test for thyroid trouble.  (I'm obviously not impressed with the level of care I received).  
I just thought it was interesting that the crash correlated with the ALT/AST rise and then resolved when things were under control so maybe there's something to it?  If only we knew.  I'll be able to tell you the moral of the story in about 10 days.  Are you on any new meds for side effects from tx that might be raising those levels?  I have heard of ALTs rising during tx and still having a happy ending ~ so try to keep the faith.
ambush
Avatar universal
Looks like we posted around the same time. Glad to hear that you'll be getting a PCR done now.

While anything with this virus is possible (as is shown through both personal patient experience and in studies and papers), short of lowering or removing your meds at this point in time (which I would never recommend doing), I don't know of any way to test your theory that the virus is being supressed just enough right now by the meds to remain out of serum, yet still able to increase replication in the liver. Possible? I would guess it would be. More importantly is what is it's probability. That's an unknown. But I would also think that after a certain amount of time - even while on the meds - if the virus were increasing in replication in the liver, it would be expected to 'breakthrough' enough to be read in blood testing.


TnHepGuy
Avatar universal
I also has severe headaches and tried some migraine meds including Imitrex but had zero releif from them. The best releif was to lay still in the dark or with something covering my eyes and focus on relaxing. I know that's not much but that's how I had to deal with it often. I did get some pain killers that I had to take when it was unbearable but I tried not to take them when possible since the pain killers were just another drug to add with their own set of sx'. I sympathize with you on the headaches, mine were terrible. Hope you find something that helps. LL
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