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Hep C Discussion Forum -> General Discussion -> Expected vs Serious Rashes and side effects, how to know the difference?
Post Info TOPIC: Expected vs Serious Rashes and side effects, how to know the difference?
Isiscat2011


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RE: Expected vs Serious Rashes and side effects, how to know the difference?
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These are good questions and you kinda have to take it one side effect at a time and see how bad it gets.  You don't want to be calling doc every time something new pops up but there are some times when things do need to be checked out or at least discussed with your doc. 

I had some sides that just came and went and came and went but never got over the top--like headaches, diareha, the burning butt thing, and feeling bitchy or weird.  The nausea was with me 99 % of the time but an rx named ondansetron helped a great deal.  These are what I call the annoying type sides--not usually gonna hurt ya-- and can often be treated with OTC, home remedies, or a script.  If it will make you more comfortable then a good doc will be all for helping you get through the annoying sides too.

The sides that can become very severe and can warrant tx modification or even discontinution are the blood problems and the rash. You may want to follow your own blood/lab results b/c sometimes it takes the doc's office a few days to receive and follow up with those (like if you go to lab on a Friday for sure).  Blood levels can turn from low to seriously low to dangerously low in a short time.  Ask doc or find out here what blood levels are considered problematic and then when you have your blood drawn just wait for the results and check for yourself if you want.   

Like Lady says, there are grades of rashes and she explained those very well so no need to repeat.  Sometimes they also consider how much of the body the rash covers and >50% is cause for concern. They may also consider length of time you have had the rash b/c after a certain period of time a rash can become systemic and effect your whole system on the inside too.   My rash came the day after I first started tx; it looked like a sunburn on top of measles and it covered >90%.  Doc almost stopped me there, but I begged not to throw in the towel and was fortunate that it subsided within a couple days.  Then it only came back ocassionally in small patches. 

I would also call doc if you feel heart/chest pain and shortness of breath (although those my just be symptoms of anemia so try not to panic).  Also, watch for vision changes and if you feel like you are losing it mentally. If you can, talk to your treating doc/specialist.  If not then tell your GP/primary care provider. 

Keep in mind that you may not have most of these side effects.  Not everyone does but good to know about just in case.  My NP told me I would only feel "slight flu" symptoms and I would rather know the full story.  That is what informed consent is all about.

Best of luck to you.confuse



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Suzanneaz


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Hi, thank you for the reply. The rashes sound like something that normally with another type of medication, the Dr would take you off immediately right?! Wow, not looking forward to that. I guess I need to ask my Dr what the serious signs are then. Thank you



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Hep 1A. 550,000. Starting tx on 1/06.

 
LadyAlaise


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Well I know I can only speak for myself:
My Primary Care Physician (Dr) has prescribed antibiotics when needed thus far into treatment for the typical stuff (tooth infections etc), however I keep in close contact (via email) with my NP at my Liver Specialists and she has been my 'go to' person regarding side effects of treatment; when I developed a rash from Incivek (and been told is is generally normal for a light rash) she prescribed Hydrocordizone cream & benadryl and asked me to keep her apprised of my progress.

My Dr (PCP) is not specialised in the treatment of Hep C and has had to coordinate with my Liver Dr's office regarding what meds are ok and not ok for me to take during treatment.

He did asked that he be kept apprised of my treatment (he gets copies of my labs and updates from my NP) but otherwise he is a family general Doctor. He knows about as much as I do about the meds, treatment and so on and right now I might just know a bit more than him lol ;) from my First Hand Experience.


When my Rash did get severe my NP told me to come in; she looked at the extensive rash and called in another liver specialist (as mine was not in the office that day) and they both agreed I had to stop incivek early (I was turning bright Red from my feet to my ears-THEY don't WANT TO SEE THAT-that sort of reaction is NOT good) they had a chart rating the main three stages of Rash reactions and what is considered acceptable; Light & Moderate is passable; Severe (Turning Bright Red instead of just splotches) is not Acceptable.

Before I was taken off Incivek my injection areas reacted badly (at first they worried it was Cellulitis), but it turned out NOT to be an infection; I am having Allergic reactions to the Interferon; I was prescribed a topical steriod cream and that DID help.
Since Stopping the Incivik at week 6 (I am in week 7 now) my rash has mostly gone and my major itchyness has greatly abated and is almost gone; I have also noticed that my reactions at my injection sites are not as inflamed and red; though I still get reactions but they are not as severe and they told me to stop injecting it into my arms; thus far I have put the last two shots in my belly and that is an improvement.
My Liver Specialists treat/are treating a number of people so I was told by my NP; she told me of one other patient who that same day ALSO had to stop incivek early because of Severe Rash; though from what I have gathered this is not considered the norm reaction.
If you develope a rash keep your NP or Liver Specialist apprised and updated on your progress or the state of rash & updated as to your general feelings during treatment; keep well hydrated (drink drink drink that H2O), and try to get plenty of rest at night and aside from your 20 Grams of fat (if you end up on Triple Tx with Incivek), try to eat healthy. And AVOID HOT showers; Luke warm to slight warmth is best; Hot Showers DO feel awesome through this BUT it dries out the skin more and will flare up the Rash!!

My NP also asked me to keep her updated to how I am emotionally feeling as well, if I feel rageful and what not or more down in the dumps than usual; If I get abdominal pain, if I get any more skin reactions, if I do develop nausea and diareah as they have other means (meds/tools) to help address these side effects and they have said they do not want me to suffer needlessly when I can be taking additional preventatives to theside effects etc.


I have taken a very pro-active stance with my treatment and am sure I keep in touch aside from my at first weekly then bi-weekly appts. I Email my NP with updates as needed once or twice a week; if something comes up I call the office (they have on call nurses 24/7 via phone) and they help me to gage what I should do. If I have a question about Medication interactions (such as for teeth work) I call the office and if need be I call the Pharmacy who sends me the meds as they are also knowledgable about what meds are ok or not ok. 

They at the office have said how nice it is that I am doing this as it also helps them to treat my hep more effeciently and helps to make sure my treament is as smooth as humanely possible. ( and I would think it also can help them to help other patients gage there own treatments-ie: feedback, what to look out for etc)

Keep in mind; we All have variant degrees of reactions to these different meds; just like the Hep effects everyone a bit different, so too it seems do the meds.

For myself this is what lately I have been dealing with;
I have been getting body aches and fatigue.

I have had bouts of weakness and brain fog.

I have lost 20 pounds in the past two weeks; they are keeping close tabs on this as I guess it can be not good down the road.

I had a migraine the other day; I let my NP know but I thus far don't think it is nessisarly related to Tx; perhaps stress and generally feeling crudy.


I have had fevers and chills (even at the same time; such a wierd sensation let me tell you) however I have also noticed the times I have felt really crappy have been :
1. When I haven't been keeping my water intake up (slacked off occasionally); when I drank more water; I felt better.
2. within the first 3 days after my weekly Interferon Shot; feel crappy and flu like. but by the mid week point it subsides.
3. When I haven't gotten enough rest in combo with any of the above.

In general I feel less than myself but I am able to pull through most of the days. It can be a struggle but is worth it to get rid of this Dragon.
--
I thankfully have not had Nausea or Diareah. I am VERY greatful for this as I know many others here and elsewhere struggle with this.
My NP asked me to make sure to let her know if I DO develop nausea or the runs; as they have means to help that.

I Hope that your Liver Specialist's office might have someone to 'go to' for your treament and be sure to educate yourself on the sx and how they are sometimes addressed; what may work for some does not work for others in terms of helping keep down sx.
For myself having taken such an active role in my own treatment I believe has helped.
I hope my telling a bit about my experience thus far into treament has helped give perspective and helped you Suzanne.
Again I can only speak for myself; perhaps you will have minimal sx?
(toasts water glass) Here's to your tx and may your sx be few and your VR UND!
~Renee



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Genotype 1A, Genotype (from parents) CC, Viral Load=7,514,000 (as of 12/6/11) Started Triple Therapy TX: 12/17/2011.UND @ 4-48 Wks Taken Off Incivek @ 6 wks due to Rash Response. Finished TX 11/17/12. SVR year 1
Suzanneaz


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After reading here about rashes, some on the body and some around injection sites, what would be a defining incident that warranted going to the Drs? Can I go to my usual MD for that treatment if necessary? Going to my GI is just  a joke, I have to drive over for 45 mins, tell them what I need and they send me home with a future appt date, so Id rather go to my MD for any problems I have when I start treatment.

What about the other side effects. If its expected to possibly have headaches, body aches, over all achy, not hungry, nauseus, and any others I havent mentioned, how will I know when to see a Dr or just man up.

Thank you, Suzanne

 



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Hep 1A. 550,000. Starting tx on 1/06.

 
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