I never heard such...........................
Mike
I had no ill effects when abruptly stopping ribavirin and interferon and I have felt much better post treatment than I did pretreatment. Didn't SVR either so we're all different.
I had the same reaction...I knew it wasn't the INF, since I tapered off of that very slowly.
IT had to be the abruptly stopping the riba...to test this theory I went back on half dose, and felt much better...so I tapered of the riba over a couple weeks.
I haven't researched it much, but the riba has many things in common with amphetamines in how it effects the body. It reduces the happy brain chemicals makes you loose appetite, get the shakes etc etc etc....co coming off of it can also lead to some symptoms errily close to those seen with amphetamine withdrawal.
NOw, I know the riba leaves the body very slowly, over many months, but I also know my body, and the aches and pains got much worse by day 2 after I laid off the 1200 mg of riba, so for what it's worth, who knows...maybe the body just gets used to it...even though its a poison and has trouble recalibrating if the dose drops too quickly.
After dosing myself with a half dose for a week or 10 days I tried again going off it completely, and this time I didn't feel nearly as bad. For what it's worth.
mb
Hi, Richard here, its been a year since completing a year-length course of peg interferon+riba, showed clear after 3months of treatment... 3 months after treatment was stopped, it was shown to be back. Now the count is 145,000, before treatment it was 23,000... and they're trying to tell me that the blood count has no relation to how I feel!!. Anyway, yeah, you can expect to feel unwell for up to at least 6 months after completing treatment. Some people feel better within one to two months. I'm still feeling unwell after treatment, which I finished over a year ago now. Current position is that I'm waiting for a new treatment to be used, in clinical trials (I was one of the first to receive the pegylated form of interferon) they're saying they're going to try something new on me. Interferon + something else, but they're not telling me what yet, they just keep saying I have to wait until its been developed far enough. I cant wait forever!. Anyway, as I said, you can expect to feel unwell up to a year after finishing treatment, and if the treatment doesn't work (ie get rid of the virus) it will actually make you worse (well in my case anyhow, I'm not talking all cases!).. I hope your husband is one of the lucky ones and gets over treatment quickly and also that it has been successful. Best wishes,
Richard.
Has anyone experienced an increase in nausea and flu like symptoms following completion of six month treatment with Interferon and Ribavirin? My husband is only 3 days post treatment and feels worse than he did at any point during treatment.
Any input would be appreciated. Have a call in to the Dr., but would appreciate any info on actual experience with this.
Fortunately, for me, I didn't get to that severe of a case of it, i.e. like that pic. I didn't have that much of a rash that I could see, just the burning and itching. I guess, the dermatologist can see it when she knows what she's looking for and with those bright lights. Anyway, the only way I found out about it was with the skin biopsy and what came back on the path report. I've been managing it pretty well. I have been doing very good with avoiding the triggers, but occasionally get itchy again when I exercise and get too hot by that. I went out to a park on Mon. (in North Florida, w/my parents), but (like a weirdo or something), walked around the whole time with an umbrella over my head to keep the sun off of me. I felt like such a dork! But, I didn't want to get all itchy again because it's very annoying when it flares (as you know). It's difficult when you live in Florida and it's sunny most of the year, to avoid sun exposure, especially when it's a pretty day from like Oct.-May time frame. I've also noticed that when I drink coffee in the morning that it seems to make me get a little itchy, too. I didn't notice if hot beverages were on the list or not, but I guess it could cause a change in temperature. The hematologist ordered a SED rate when I was there about 2 weeks ago, didn't hear back from that. When I see him for follow-up in a month, he wants a STAT CBC on the day of my visit. He also wants to take a look at my last upper abd. ultrasound.
Susan
Interesting. The pics I found on T.M.E.P. -- look very similar to what I had on treatment and even after. The first link shows what my back looked like during treatment and the second link is more representative of how certain parts of my skin look now. My diagnosis for the leisons in the first link was guttate psoriasis as shown in link number 3. As you can see, guttate looks similar to the T.M.E.P. in link 2. I will file this away and mention to my dermatologist if I think it becomes relevant. Good luck in resolving your skin issues. BTW I have similar triggers for my rosacea and the combination of Allegra and Zantac is interesting. If you have any more infor or studies on that two-drug combination, please let me know.
-- Jim
http://www.okmastocytosis.org/tmep.htm
http://dermatology.cdlib.org/103/NYU/case_presentations/102103n1.html
http://www.psoriasisguide.com/psus_basics/types/types_of_psoriasis.html (guttate)
I am post treatment 9-1/2 mon. I had very little itching while on treatment. Post treatment is another story. I had so much itching, the Benedryl didn't help me, that I went to the dermatologist. BTW, I had no rash. The itch also burned. Anyway, the dermatologist took a skin biopsy and the pathology report came back showing an increase in the mast cells of the skin. (Mastosis of the skin). It called it something else, too, Telangiectasia something or another with the letters abbreviated to T.M.E.P. the word purpura was the last word. I'd have to go and look it up on the report, but I'm feeling lazy at the moment and don't want to go and dig for it. The derm. prescribed Allegra and Zantac. There was some literature showing that the combination of these two, was supposed to be helpful in calming the symptoms. She said to avoid the triggers, (direct sunlight, hot baths, in general-getting too hot like in exercise, stress). She said to avoid I.V. dyes and gave me an Epi-Pen in case of insect sting. I also had to follow up w/a hematologist/oncologist to rule out a systemic cause. I am fairly certain in my mind that the coming off of the last treatment, somehow triggered this thing into being, since I never had it prior to that happening. Anyhow, that's my story.
Susan
I've had itching thru most of tx, tried atarax, then zyrtec. I've had hives all my life, but this is itching from the inside out. Hope you can get relief. Does it ever happen when you are exercising or outdoors on a muggy day? I use to always get hives then. Never found out why.
Bug
don't know if I"ll even make sense, just came back from a birthday party for the kid I take care of, it was her 18th, and I took her and all her little friends (12 of them - ranging from 16 to 18 years of age) to a dinner and karoke...I really felt like a zoo keeper, an out of control zoo keeper, they kept grabbing the microphone from each other and singing to the tops of their lungs "My milkshake brings all the boys in the yard) and a bunch of stupid songs like that, cept the ones that werent stupid....God! I cant believe I'm still standing, and I'm almost deaf...not to mention the slight heart attack when I got the bill...anyway...
yes, I got hives just from the hepatitis...they were on the top of my head, to the bottoms of my feat, big pink ones, everywhere....course I COMPLETELY freaked out, and went to the ER, whereupon they told me that hives have nothing to do with hepatitis, and ran a bunch of tests (that was a good thing) but of course, on my way out they gave me some literature on hives, and right there in black and white, it says you can get hives from hepatitis, who knew that they don't read their own literature...I took some benedryl and they went away, never got them again....I think I'm going to go walk with my doggie, zombie like, down the street, anywhere for some quiet....they all giggled all the way home when they weren't yelling...did we act like this when we were their age? I think I had dropped acid by that time...i can't remember...I'm new to this mother stuff...you teachers out there? you deserve metals and trophies...
hey, if youre going to mix me up with anyone, Friole is a great member! I agree with you, they are smarter then us in some ways.....though to cut us a break, they didn't have all the history of horrible effects some of these drugs can cause...I remember when they said that cocaine made you successful! But I think our generation, at least, read books and had quiet time, (though a lot of these kids do that too) and had a lot of time going outside doing various physical things, many of these kids are too hooked into their computers, gaming and MySpace, etc...to allow for that...she at least told me this morning that it was the best party she ever had, even though I'll have nightmares about it, ha ha !
Good Morning -- I must say, very early here. I didn't develope high blood pressure. As a matter if fact, I'm lucky there (Im told). My pressure is 112 over 68 on average. I was told this is due to the 35 pounds I lost during treatment. I am still suffering with the hives today. Worse it seems in the morning hours. I'm going to try some Benedryl just to see if that will help. My primary Physician thinks it was Lisinopril (sp) that was causing the hives. Been off those for awhile now -- still have the bumps. They come and go. I'll let you know about the benedryl. And o yeah, I was taking LSD at 18 Friole. I was in the Marine Corp back in the late 60's. It was the thing to do then. Hope this generation is a little more smarter then my own.
when we go off the meds, can we expect to have withdrawal or other sides like described above? given the posts above, about itching, is there some kind of herbal cleansing remedy that might be of help?
to anyone who has completed tx. is there a recommended decrease of riba or procrit as we near tx end? i know RN would advise but i am curious.
i was once very knowledgeable about herbs but that was many many years ago, things are so different now and i have not kept up. there is so much that others here know of.
thank you. hope you are feeling better soon Litchy
Ha - LOL - yup, yer correct!!
Thanks for your concern. I'm doing well. I just started week 27. I only work 2 more months then I retire - YEAH!
How are you doing? Your comments are always so helpful.
Im almost 5 months post and do have some itches my skin was very dry in patches after tx...the sun makes me itch worse......I developed high blood pressure the last 3 months of tx and now im currently taking the same drug you were plus diuretic to keep it down.. did tx cause your blood pressure to go up? im glad that you dont have to take meds for it now....I also seem to be having more allergies, like right now I live in texas and the pollen is making me sick were as before tx it didnt ......
Thus far I am clear of C. I have a 6 month test coming up in May. I'm failrly optimistic - hopeful that is. The first test I had after 5 months of treatment came back negative. Of course, the one that really counts is the 6 month post test. Thanks for the information. I'll stay in contact. Your question about a lot of liquid intake -- well not doing well with that. I know that is important. I will start drinking a lot of H2O aand see what results will filter. I know this was very important during the Ribo and interferon run. Thanks for your response.
And how are you this morning. Where are you in treatmen?
Thanks for all the helpful information.
Hi and welcome to the forum. First and formost --- did you clear?
The interferon leaves the system relatively quickly after treatment, I am told, but the evil Ribavirin can take as long as 6 months to clear out. I didn't get hives post treatment myself, but it does not seem unlikely as the poisons expell (the posion being Riba). If it is the Riba, I don't think topical allergy ointments will help. Are you still drinking plenty of water? I think that will do the best job of clearing the system. Since you had severe itching throughout tx, it would seem likely to me that you have relativley sensitive skin and this is still the residual effect.
After tx I had horrid itching and it was all just below the surface of my skin. It was as if my blood vessels were itching. I am now 7 months post and don't have any itching and haven't for months. I did have a little neuopathy, I think - numbness of the fingertips and sensitivity at the tips of my toes, and still have that to some degree.
frijole