Aa
?'s about Procrit and other SX of TX, would appreciate input
Good-Day to everyone! I hope my last attempt at this didn't go through and I waste a thread for the day. Not sure what happened, just that I was typing along and it dissapeared! Oops!
Ok, This is my first time here, have been following daily post for about 4wks now. I'm at 19/48 w/ Peg/CoPeg, a 1a here. I've really been struggling here this last month with all the SX, this stuff is kicking my butt more now than in the beginning. I'd really appreciate some education on when and why Procrit or Neupogen are RX'd. My HGB is 9.7, WBC is 2.4, ANS is 1.2. when the nurse first called, she said they would be starting me on Neupogen, then called later to say I would be starting Procrit injections 1x wkly for 4wks, then CBC to determine continuance nacessity. I don't see my doc til next Thurs, but the infusion center will be setting up to start me on this. Input PLEASE!
Also, I haven't found any info on the SX of Thrush! Anyone else dealing with this? I'm in my second bout with it, tx with Diflucan. It took almost 10wks to clear it up the first time. I got it the day after starting TX, and the doc says it a SX too!!
Ok, This is my first time here, have been following daily post for about 4wks now. I'm at 19/48 w/ Peg/CoPeg, a 1a here. I've really been struggling here this last month with all the SX, this stuff is kicking my butt more now than in the beginning. I'd really appreciate some education on when and why Procrit or Neupogen are RX'd. My HGB is 9.7, WBC is 2.4, ANS is 1.2. when the nurse first called, she said they would be starting me on Neupogen, then called later to say I would be starting Procrit injections 1x wkly for 4wks, then CBC to determine continuance nacessity. I don't see my doc til next Thurs, but the infusion center will be setting up to start me on this. Input PLEASE!
Also, I haven't found any info on the SX of Thrush! Anyone else dealing with this? I'm in my second bout with it, tx with Diflucan. It took almost 10wks to clear it up the first time. I got it the day after starting TX, and the doc says it a SX too!!
OOPS again, new at this, and I wasn't finished with my other "?"
I think I covered the "thrush", except to say this is all on the soft-pallet, roof of mouth and throat area. I can't recall reading anything about this, but then again my brain fog is at its peak lately. I'v never had anything like this in my life - anyone?
Last question is about eye irritation and infection. My eyes are also in their 2nd round of swollen eyelids, top and bottom, they get red, raw, and the skin peels off both lids. The swelling/puffienss is so bad on the lower lid area it creates not just one bag but two!! I call this my bull-frog look, and it's not very appealing. Skin is tender and very irritated, everything burns the skin, from lotions to ointments, and they itch so bad I wan't to scratch my eyes out. I have light sensitivity, but not sun sensitive, if that makes sense. Have the dry eye thing too along with aches and pressure behind my eyeballs
Want to say in finishing that you all have helped me tremendously over these last wks, and I really appreciate the love and concern along with great info that all of you share.
I think I covered the "thrush", except to say this is all on the soft-pallet, roof of mouth and throat area. I can't recall reading anything about this, but then again my brain fog is at its peak lately. I'v never had anything like this in my life - anyone?
Last question is about eye irritation and infection. My eyes are also in their 2nd round of swollen eyelids, top and bottom, they get red, raw, and the skin peels off both lids. The swelling/puffienss is so bad on the lower lid area it creates not just one bag but two!! I call this my bull-frog look, and it's not very appealing. Skin is tender and very irritated, everything burns the skin, from lotions to ointments, and they itch so bad I wan't to scratch my eyes out. I have light sensitivity, but not sun sensitive, if that makes sense. Have the dry eye thing too along with aches and pressure behind my eyeballs
Want to say in finishing that you all have helped me tremendously over these last wks, and I really appreciate the love and concern along with great info that all of you share.
Some of your side effects are somewhat similar to mine. For me, the mouth and skin issues seem to be fungus related. The fungi cause things like athlete's foot, jock itch, ringworm, vaginal yeast infection, thrush, etc.
When I started getting skin problems I tried anti itch stuff like lamosil?, then cortizone spray. These relieved the itching, but the skin remained raw. Finally I started using Lotramin (an anti-fungal), and that seems to be helping my skin get back to normal. These skin problems crop up in different places for me: between my index and ring fingers where they join the hand, on the back of my leg at the knee joint, the groin, and in my ears. The skin sometimes flakes, sometimes cracks open (especially between my fingers), and it itches like the worst itch I've ever had. It feels soooo good to scratch, but as soon as I stop scratching, it just hurts and I regret scratching it.
For the skin, the Lotramin has helped a lot, but I occasionally still use some cortizone when the itching flares up.
For the sores in the back of my mouth and sides of my tongue, I've just started using something my doctor prescribed called "Magic Mouth Mouthwash". It's a weird concoction of some prescription and over the counter stuff. I think one component is an antifungal. Another noticable component relieves the pain by making your whole mouth numb.
What does your doctor say? They should be recommending stuff to keep on top of side effects before they get out of hand.
When I started getting skin problems I tried anti itch stuff like lamosil?, then cortizone spray. These relieved the itching, but the skin remained raw. Finally I started using Lotramin (an anti-fungal), and that seems to be helping my skin get back to normal. These skin problems crop up in different places for me: between my index and ring fingers where they join the hand, on the back of my leg at the knee joint, the groin, and in my ears. The skin sometimes flakes, sometimes cracks open (especially between my fingers), and it itches like the worst itch I've ever had. It feels soooo good to scratch, but as soon as I stop scratching, it just hurts and I regret scratching it.
For the skin, the Lotramin has helped a lot, but I occasionally still use some cortizone when the itching flares up.
For the sores in the back of my mouth and sides of my tongue, I've just started using something my doctor prescribed called "Magic Mouth Mouthwash". It's a weird concoction of some prescription and over the counter stuff. I think one component is an antifungal. Another noticable component relieves the pain by making your whole mouth numb.
What does your doctor say? They should be recommending stuff to keep on top of side effects before they get out of hand.
Don't think twice about the Procrit. Take it, you have mild anemia which may account for the way you feel. You'll start feeling better in 2-4 weeks as your hemoglobin will rise an average or 1-2 points.
As far as Neupogen is concerned. Ask your doc/nurse what is the value of your Neutrophils Absolute. It's part of the complete blood count with differentials. If it's not 500 or below, you really don't need it yet.
Don't know about the external eye thing except a visit to a good dermatologist solved a lot of my skin issues on tx.
For the dry eyes, liquid tears is the way to go. I like Genteal. Use the "mild" during the day and sometimes the stronger nighttime prep at bedtime. Also, wear sunglasses if you don't already. At least in my case, tx has made my eyes more sensitive to light.
As far as Neupogen is concerned. Ask your doc/nurse what is the value of your Neutrophils Absolute. It's part of the complete blood count with differentials. If it's not 500 or below, you really don't need it yet.
Don't know about the external eye thing except a visit to a good dermatologist solved a lot of my skin issues on tx.
For the dry eyes, liquid tears is the way to go. I like Genteal. Use the "mild" during the day and sometimes the stronger nighttime prep at bedtime. Also, wear sunglasses if you don't already. At least in my case, tx has made my eyes more sensitive to light.
hgb at 9? Procrit for sure! I was at 10.2 when I got mine. you will feel better within a week. It stings a little, so don't expect it to be like the Pegasys at all.
I also had the eye thing but not as bad, not too many others had it here, I got atarax and hydrocortisone cream for it, but it was the antibiotics for something else that helped clear it. I really think we get some sort of low grade infections that cause some of this stuff.
good luck
I also had the eye thing but not as bad, not too many others had it here, I got atarax and hydrocortisone cream for it, but it was the antibiotics for something else that helped clear it. I really think we get some sort of low grade infections that cause some of this stuff.
good luck
I found that eating yogurt (live culture-vanilla-my choice) helped with mouth sores. Many have mentioned "magic mouthwash" as helpful though I never tried it myself.Drink as much water as possible and don't be afraid to use artificial tears as mentioned above. Avoid the sun cause it only aggravates all those side effects. Hang in there. frank
I had a lot of mouth problems during treatment, and finally got referred to a specialist at the stomatology (mouth) clinic at the University of California, where a LOT of patients in treatment for HCV are seen. The specialist I saw had seen a lot of us, and was writing a paper, with one of the treating (& reseaching) doctors on mouth side effects of this treatment protocol.
What effectively treated my oral "thrush" was Nystatin tablets. They are actually "vaginal tablets" aka suppositories, but have long been used to treat oral thrush, also. The medication is available in a form designed for the treatment of oral infection, a liguid swish and spit. But the tablets are more effective, as they remain in the mouth longer (you hold them in the mouth while they slowly dissolve). Don't worry, the taste of them is surprisingly pleasant.
The sores you describe sound like the ones I had, which might be called Apthous stomatitis. It's an allergic reaction to herpes, which seems to be fired up bigtime by this treatment. I took Valtrex, at a mega dose of 1 gram twice/ day,for the duration of treatment (and for awhile after, then gradually decreased the dose) after I was diagnosed with this. I also was given a topical liquid to apply with a q-tip to sores as they happened (3 times/ day until the ulcer was gone): clobetasol propionate topical solution, USP 0.05%. This a medication billed as treating scalp infection, but you only put a drop on the mouth sore, not to worry. And, it WORKS. The relief I got from mouth pain was huge and improved the quality of my life 300%
I also had another fungal infection (also chronic) at the corners of my mouth/ lips. For that I got Ketoconazole cream to apply to the sores which looked like my skin was splitting open (yes, painful). I know this happens to others, and I know too many doctors shug it off, when it is very hard to live with and can be easily and effectively treated.
If your M.D. doesn't believe these are the "correct" prescriptions to treat the problems, perhaps you could encourage him/her to call and consult with Dr. Lozada-Nur and U.C.S.F. Getting relief from the mouth problems is a very big deal!
What effectively treated my oral "thrush" was Nystatin tablets. They are actually "vaginal tablets" aka suppositories, but have long been used to treat oral thrush, also. The medication is available in a form designed for the treatment of oral infection, a liguid swish and spit. But the tablets are more effective, as they remain in the mouth longer (you hold them in the mouth while they slowly dissolve). Don't worry, the taste of them is surprisingly pleasant.
The sores you describe sound like the ones I had, which might be called Apthous stomatitis. It's an allergic reaction to herpes, which seems to be fired up bigtime by this treatment. I took Valtrex, at a mega dose of 1 gram twice/ day,for the duration of treatment (and for awhile after, then gradually decreased the dose) after I was diagnosed with this. I also was given a topical liquid to apply with a q-tip to sores as they happened (3 times/ day until the ulcer was gone): clobetasol propionate topical solution, USP 0.05%. This a medication billed as treating scalp infection, but you only put a drop on the mouth sore, not to worry. And, it WORKS. The relief I got from mouth pain was huge and improved the quality of my life 300%
I also had another fungal infection (also chronic) at the corners of my mouth/ lips. For that I got Ketoconazole cream to apply to the sores which looked like my skin was splitting open (yes, painful). I know this happens to others, and I know too many doctors shug it off, when it is very hard to live with and can be easily and effectively treated.
If your M.D. doesn't believe these are the "correct" prescriptions to treat the problems, perhaps you could encourage him/her to call and consult with Dr. Lozada-Nur and U.C.S.F. Getting relief from the mouth problems is a very big deal!
That ws, Dr. Lozada-Nur at U.C.S.F. ( I meant to say). AT, not "and."
Also (I forgot to mention before) the dry mouth is a significant factor re: the oral fungal infections. The problem is only partly the dryness. Saliva contains enzymes which normally help to keep the flora and fauna in the mouth in balance. Using Biotene oral hygiene products will help, because they contain and replace some of the missing enzymes. Try to drink your water in very frequent small amounts, vs. a large glass less often -- helps to keep the mouth moist. Biotene makes a gum, too. These products are kinda pricey, but I found them well worth it.
Also (I forgot to mention before) the dry mouth is a significant factor re: the oral fungal infections. The problem is only partly the dryness. Saliva contains enzymes which normally help to keep the flora and fauna in the mouth in balance. Using Biotene oral hygiene products will help, because they contain and replace some of the missing enzymes. Try to drink your water in very frequent small amounts, vs. a large glass less often -- helps to keep the mouth moist. Biotene makes a gum, too. These products are kinda pricey, but I found them well worth it.
p.s.
Diflucan is hard on the liver, taking it for a long time risks liver toxicity; I'm sure your prescribing doc knows this, tho.
Nystatin, on the other hand, is a local and to-the-point treatment which cleared my "thrush" inside two weeks. You can always repeat as needed. You can also keep it on hand, and pop a tablet into the mouth as soon as/if you feel symptoms of an infection starting up again.
A last comment, on a differernt subject -- you need the Procrit, YES. When your hemoglobin drops below 10, you are in danger of serious complications, like heart attack. The heart muscle needs the oxygen carried by the hemoglobin, just like the other muscles you can FEEL telling you how tired they are, how stressed by inadequate oxygen supply.
Diflucan is hard on the liver, taking it for a long time risks liver toxicity; I'm sure your prescribing doc knows this, tho.
Nystatin, on the other hand, is a local and to-the-point treatment which cleared my "thrush" inside two weeks. You can always repeat as needed. You can also keep it on hand, and pop a tablet into the mouth as soon as/if you feel symptoms of an infection starting up again.
A last comment, on a differernt subject -- you need the Procrit, YES. When your hemoglobin drops below 10, you are in danger of serious complications, like heart attack. The heart muscle needs the oxygen carried by the hemoglobin, just like the other muscles you can FEEL telling you how tired they are, how stressed by inadequate oxygen supply.
WOW! Thanks so much for the great info, I'm going to have to go back over it all one or two more times. I have the Nystatin liquid and it just wasn't getting the job done, my PCP also had me try tetracycline, breaking the capsules open and doing the swish and swallow with a tspn of water, OMG!!! That was the fowlest, most bitter tasting and made me vomit! Needless to say, I don't know how effective that would have been. It's bad enough with daily nausea and lack of appetite, no need to go there with that stuff.
Also got the sores/cracks in the corners of my lips, the roof of my mouth always feels raw, same with my tongue, and eating is just plain misery. Top it all off with no appetite, constant nausea and here is my latest...Diareah for the last ten days now. I force myself to eat little bits at a time and I always have a big water glass by my side. I actually almost panic if my water glass is low, and heaven forbid if I ever have to go somewhere without my water bottle!
Another problem I'm plagued with is the aches and pains in my muscles and the low grade fever. Sleep is horrible even with ambien, trazadone or temazapam, and No i don't take them all at once, just different rx's to see if something will work better than the other. Ambien used to put me right out years ago when I used it, now it seems to only be good for about two hrs. So other than being exhausted, short of breath, majorly fatigued and all of the above...I'm doing pretty good overall. This forum is so helpful, everyone in the same boat and supporting each other. I'm one of those that tends to act like I'm not sick and I've really struggled with accepting the fact that I just can't possibly do what I used to do in any given day. My latest idea was that a shower chair would be helpful, just to get from start to finish some days, and then that image just makes me laugh out loud. I'm 48yrs, female with two little boys and a good man. I feel so blessed and feel frustration at the same time,just due to such a low QOL. Thanks so much again.
Also got the sores/cracks in the corners of my lips, the roof of my mouth always feels raw, same with my tongue, and eating is just plain misery. Top it all off with no appetite, constant nausea and here is my latest...Diareah for the last ten days now. I force myself to eat little bits at a time and I always have a big water glass by my side. I actually almost panic if my water glass is low, and heaven forbid if I ever have to go somewhere without my water bottle!
Another problem I'm plagued with is the aches and pains in my muscles and the low grade fever. Sleep is horrible even with ambien, trazadone or temazapam, and No i don't take them all at once, just different rx's to see if something will work better than the other. Ambien used to put me right out years ago when I used it, now it seems to only be good for about two hrs. So other than being exhausted, short of breath, majorly fatigued and all of the above...I'm doing pretty good overall. This forum is so helpful, everyone in the same boat and supporting each other. I'm one of those that tends to act like I'm not sick and I've really struggled with accepting the fact that I just can't possibly do what I used to do in any given day. My latest idea was that a shower chair would be helpful, just to get from start to finish some days, and then that image just makes me laugh out loud. I'm 48yrs, female with two little boys and a good man. I feel so blessed and feel frustration at the same time,just due to such a low QOL. Thanks so much again.
I found vitamin E was helpful for the eyelid problems. I broke open a Vit E capsule and used a Qtip to apply the oil. It's OK to use around your eyes and helped keep the raw skin under control.
Go slow on the Procrit shot ~ burns a bit, but injecting slowly seemed to help. It's well worth it and will make you feel somewhat human again.
Good Luck ~ and hang tight :)
ambush
Go slow on the Procrit shot ~ burns a bit, but injecting slowly seemed to help. It's well worth it and will make you feel somewhat human again.
Good Luck ~ and hang tight :)
ambush
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