Aa
Medicmommy, Imr28, Wassup...others
Haven't seen several on here (some sort of newbies, older newbies:).
A few on tx. Just wondering where, how you guys (gals) are??
LL
A few on tx. Just wondering where, how you guys (gals) are??
LL
I'm smiling from ear to ear about your great news!!! Congratulations and continued UND to you! :D
Haven't seen medicmom in quite a while...lmr28 and wassup were around earlier last week but haven't seen them in a few days (Wassup was scheduled originally to start on 5/5 but was running into some issues/delays w/pharmacy, etc.)
Lots of hurrays for you,
eureka
Haven't seen medicmom in quite a while...lmr28 and wassup were around earlier last week but haven't seen them in a few days (Wassup was scheduled originally to start on 5/5 but was running into some issues/delays w/pharmacy, etc.)
Lots of hurrays for you,
eureka
I'm hanging in there...by a tiny thread. Good news is UND at 3.5 weeks. Bad news is can hardly stand up without thinking I'll pass out- chest pain - shortness of breath...yea I know go get a test but I don't feel like moving...the thought of getting on a freeway...yikes..is this where the high incidents of suicide come in (accidental). I'll give it another day and hope I wake in the morning...or afternoon at this rate.....4.5 more months of this....I don't think so (so here is the "lie to me" part again - tell me how great everything will be...you know the stories about how your hair grows long, lucious and flowing and you become curvatious....
Hey i'm still here too :) Aren't you ecstatically happy about that???
Happy friday!
Mikki - what is your hemoglobion count? Have you started any rescue drugs yet for the anemia because surely it sounds like you either are at the point of needing them or getting VERY close to it?
Happy friday!
Mikki - what is your hemoglobion count? Have you started any rescue drugs yet for the anemia because surely it sounds like you either are at the point of needing them or getting VERY close to it?
Me too! But been worried about wassup,
Can you get someone to drive you Mikki? I know that feeling tho. The dullness and weakness.
I have a bad couple of days too! Really bad, you need procrit for sure!
hugs deb
Can you get someone to drive you Mikki? I know that feeling tho. The dullness and weakness.
I have a bad couple of days too! Really bad, you need procrit for sure!
hugs deb
Yea - think your right - went to get a lab- both of my docs are out today - figures. And the stat is a 4 hr turn around..so may not know before the weekend - I'd rather die at home a slow miserable death before I go to the emergency room ever again...(very bad experiences obviously).
My hgb had dropped 2.3 points in 3 weeks and was 12.1 eleveen days ago so could have keep diving I supose...I gave my best performance ever at the lab to get them to try to turn it around before the offices close - so we'll see.
So what happens next? If it keeps dropping over the weekend..I keep feeling like passing out and have to sit down or lay down pretty much all the time. What signals a medical emergency bad enough to go in? Maybe I can take a little less riba - I'll see what happens today...
My hgb had dropped 2.3 points in 3 weeks and was 12.1 eleveen days ago so could have keep diving I supose...I gave my best performance ever at the lab to get them to try to turn it around before the offices close - so we'll see.
So what happens next? If it keeps dropping over the weekend..I keep feeling like passing out and have to sit down or lay down pretty much all the time. What signals a medical emergency bad enough to go in? Maybe I can take a little less riba - I'll see what happens today...
Hiyas...I've been pretty low energy lately, so not posting much...HGB/ HCT took another drop and hyperthyroid thing isn't helping...HGB= 9.4 and HCT is 28...Urgh...sigh...contacted Dr just to make sure they've noticed...Anyhow, I'm hanging in here...next week is # 12...half-way done... ~Melinda
You may be a bit dehydrated as well as dealing with the HGB drop...The warning signs are...low blood pressure symptoms (dizzy when rising, rapid, weak heart rate, episodes of sweating from doing the tiniest exertions...)...what ever you do, do not take any narcotic pain medication, and if you are on blood pressure medication, consult your doc...I swear, if they'd only give us a portable oxygen bottle and a mask, the docs would never hear from us! Hang in there! (((((((((((((((((((((HUGZ))))))))))))))))) ~Melinda
You hit the nail on the head - my doc just called and said the same thing about dehydration and I think I have lost track of drinking - need to mark the bottles I guess.
He also thinks we may have to lower the Peg just a bit. He thinks the Enbrel (Biogenetic TNF blocker for RA) that I am taking is acting like a booster shot - so I am flat out after it on Wed night as well as after the Peg on Monday - so never get any relief. I am only 103 lbs and the peg is one`size fits all - so if I still feel this bad on Sunday he said to eject about 1/3 of it before taking it.
He only said this is OK because I was clear at 3 1/2 weeks. I suggested the Riba which I'm on 800 mg but he thinks it's the Peg. My blood work was not bad hmg 12 - WBC 5
What do you think? (he's a very progressive, well known hepatalogist)
He also thinks we may have to lower the Peg just a bit. He thinks the Enbrel (Biogenetic TNF blocker for RA) that I am taking is acting like a booster shot - so I am flat out after it on Wed night as well as after the Peg on Monday - so never get any relief. I am only 103 lbs and the peg is one`size fits all - so if I still feel this bad on Sunday he said to eject about 1/3 of it before taking it.
He only said this is OK because I was clear at 3 1/2 weeks. I suggested the Riba which I'm on 800 mg but he thinks it's the Peg. My blood work was not bad hmg 12 - WBC 5
What do you think? (he's a very progressive, well known hepatalogist)
Oh some nerves were hit here, lol. ER rooms, laying there thinking I may be dieing but don't care as NOT sitting in ER 12 hours, Hgb drops, dose's lowered and sooo ooon :)
Eureka...thank you dear :) I've been smiling a lot also :)
Mikkimoe, I'm PM-ing you after this post, just a lot on info that's too long,etc.
BUT, get there and get labs! I had to have drivers thru a lot of tx, not only for me, too afraid I'd kill another at the wheel! (Shands also 40 miles away). I understand that!
The low Hgb just put me down, no doing much at all! The Riba is more responsible for the Hgb tho.
"I am only 103 lbs and the peg is one`size fits all "........
That's a subject where some of us think one way, some think another, especially in Geno 2's, 3's. We agree to disagree and all points, opinions are needed in that. I want to, and may, start a thread on this.
PM you soon.
Medicommy...there you are! You to, your Hgb getting pretty low! Glad your still around tho:) Why do you say take no narcotic drugs in this? I took 1-2 Vicodins most days thru tx, (all I'd allow myself but with the migraine, muscle pain-could have taken 6! No addictions ever, cept nicotine. ) and often a xanax to sleep with the Riba insomnia.
You hang in there, you hit the halfway mark :)
Nygirl........Hey i'm still here too :) Aren't you ecstatically happy about that???
LOL, of course I am. And an SVR girl too :)
Deb c (your it again:) Kimmy..all on tx ...hang on girls, you'll get thru it, look back and do as I am......
saying to myself "GOD, did I really do all that? How the h*ll did I do that? It's over! It's really over" :)
Feel better all....hoping for some good days for you, LL
Eureka...thank you dear :) I've been smiling a lot also :)
Mikkimoe, I'm PM-ing you after this post, just a lot on info that's too long,etc.
BUT, get there and get labs! I had to have drivers thru a lot of tx, not only for me, too afraid I'd kill another at the wheel! (Shands also 40 miles away). I understand that!
The low Hgb just put me down, no doing much at all! The Riba is more responsible for the Hgb tho.
"I am only 103 lbs and the peg is one`size fits all "........
That's a subject where some of us think one way, some think another, especially in Geno 2's, 3's. We agree to disagree and all points, opinions are needed in that. I want to, and may, start a thread on this.
PM you soon.
Medicommy...there you are! You to, your Hgb getting pretty low! Glad your still around tho:) Why do you say take no narcotic drugs in this? I took 1-2 Vicodins most days thru tx, (all I'd allow myself but with the migraine, muscle pain-could have taken 6! No addictions ever, cept nicotine. ) and often a xanax to sleep with the Riba insomnia.
You hang in there, you hit the halfway mark :)
Nygirl........Hey i'm still here too :) Aren't you ecstatically happy about that???
LOL, of course I am. And an SVR girl too :)
Deb c (your it again:) Kimmy..all on tx ...hang on girls, you'll get thru it, look back and do as I am......
saying to myself "GOD, did I really do all that? How the h*ll did I do that? It's over! It's really over" :)
Feel better all....hoping for some good days for you, LL
Hmmm...In my head I was saying...LOL...All I meant about not taking narcotics was that Mikki needed to be sure some of her problems weren't from low blood pressure first...because the narcotics would make it even lower...Otherwise, no problem...:)
(So, people CAN'T read my mind?!? LOL) Can I blame that one on brain fog? ~Melinda
(So, people CAN'T read my mind?!? LOL) Can I blame that one on brain fog? ~Melinda
I have not been around much- (mostly just feel like I have nothing positive to say, so it is better to just ISOLATE. So NOT like me!)
I am dropping like the proverbial stone (though after reading this- it seems I am in good company, I'm sorry to see....)
The migraines are still intense and I have gotten NO relief from the propranalol. The PA (who is the ONLY person I seem to be able to contact) will prescribe nothing else. (I am now totally over my medication phobia/drug anxieties and pray for it to start raining vicodin!!!) I would go to the ER many days, but do not have the energy for the time, lights, noise, germs, etc.
I am also still frustrated with my "food issues". I actually used to love to eat! Now it is like force feeding. I usually feel worse AFTER eating, so it is tough to convince myself it is worth the energy.
Still doing well on the H2O consumption.
Just heading toward the end of week 10, so time is ticking on by! Every Sunday is a milestone. HGB is down to 11 (from 15). WBC is down to 2.1 (neutrophils 812). Avoiding "helper" drugs thus far, but next week may change that.
Luckily spring has finally sprung in the midwest and I have enjoyed some light sunshine and much needed time outside. The school year will be over in 5 weeks and then I can breath.
It was great to hear the updates, even the bad stuff. Also felt great to be asked after! Thanks Lady Lauri. I have never felt so isolated in my life. I am the original social butterfly in my real life!
XOXOXO to all,
~lorraine
I am dropping like the proverbial stone (though after reading this- it seems I am in good company, I'm sorry to see....)
The migraines are still intense and I have gotten NO relief from the propranalol. The PA (who is the ONLY person I seem to be able to contact) will prescribe nothing else. (I am now totally over my medication phobia/drug anxieties and pray for it to start raining vicodin!!!) I would go to the ER many days, but do not have the energy for the time, lights, noise, germs, etc.
I am also still frustrated with my "food issues". I actually used to love to eat! Now it is like force feeding. I usually feel worse AFTER eating, so it is tough to convince myself it is worth the energy.
Still doing well on the H2O consumption.
Just heading toward the end of week 10, so time is ticking on by! Every Sunday is a milestone. HGB is down to 11 (from 15). WBC is down to 2.1 (neutrophils 812). Avoiding "helper" drugs thus far, but next week may change that.
Luckily spring has finally sprung in the midwest and I have enjoyed some light sunshine and much needed time outside. The school year will be over in 5 weeks and then I can breath.
It was great to hear the updates, even the bad stuff. Also felt great to be asked after! Thanks Lady Lauri. I have never felt so isolated in my life. I am the original social butterfly in my real life!
XOXOXO to all,
~lorraine
Medicmommy.......LOL! You had me thinking all kinds of things -being a 'medic' :)
"does it hurt hgb, does it reduce the meds, interact, etc.".
Imr.....awwww, don't feel alone there. I am such a social person, love people, talk, talk, talk :) I isolated myself most of tx (cept family, a few) but even them, not too much. I was blessed with the luxury to stay home thru tx and that I did. Weeks I rarely went for groceries and than struggled often to get them and carry into house. Once had to sit down , another time left the cart and went home, too embarrassed to go 'down' in the store! Like I said, now I'm saying "wow, that was me"! I just gave into it as , for me, alone was better most days. This forum helped so much tho, did get some 'social' here as could vent, talk and be understood.
The migraines!!! I'd get 3-4 day ones. Awful. My tx Doc wasn't to good giving meds either, I got them thru GP! (I did tell tx Doc also!) The muscle pain was 80-90% and a 6-8 on pain scale, days I couldn't walk without pain. (Take Tylenol my a*s!!) If your not fighting any drug addictions, use them. I limited them, cautious, etc., also small amounts as per hurting the liver, but no way I could stand that 24 -actually- about 32 weeks with post tx -of daily pain! Even just 2 a day took the edge off enough to tolerate. I'd suggest telling tx Dr. tho, in case of other issues. Mine had too many get addicted, problems with that, etc. NP said. He did ok what I told him I took. I have never had so much pain, all at once thru out my body, for so long. Felt like my muscles were under attack.
The force feeding, did that much also. Food was often like cardboard, no matter what it was. Have you tried shakes, Carnation instant breakfast AKA ...drinking your nutrients? When you go days with little ‘fuel’, it hurts you!
BTW....before my dx last May... I have had drug phobia for YEARS! Took few, rarley even took antibiotics, terrified of even a CT with the IV. My family and friends were so worried I'd never be able to inject and take drugs to treat. TX has brought me a long way in that! Tho still don't like to, I will now instead of suffer or to cure myself.
You hang on, feel better, it will pass :) Keep checking in tho.
LL
"does it hurt hgb, does it reduce the meds, interact, etc.".
Imr.....awwww, don't feel alone there. I am such a social person, love people, talk, talk, talk :) I isolated myself most of tx (cept family, a few) but even them, not too much. I was blessed with the luxury to stay home thru tx and that I did. Weeks I rarely went for groceries and than struggled often to get them and carry into house. Once had to sit down , another time left the cart and went home, too embarrassed to go 'down' in the store! Like I said, now I'm saying "wow, that was me"! I just gave into it as , for me, alone was better most days. This forum helped so much tho, did get some 'social' here as could vent, talk and be understood.
The migraines!!! I'd get 3-4 day ones. Awful. My tx Doc wasn't to good giving meds either, I got them thru GP! (I did tell tx Doc also!) The muscle pain was 80-90% and a 6-8 on pain scale, days I couldn't walk without pain. (Take Tylenol my a*s!!) If your not fighting any drug addictions, use them. I limited them, cautious, etc., also small amounts as per hurting the liver, but no way I could stand that 24 -actually- about 32 weeks with post tx -of daily pain! Even just 2 a day took the edge off enough to tolerate. I'd suggest telling tx Dr. tho, in case of other issues. Mine had too many get addicted, problems with that, etc. NP said. He did ok what I told him I took. I have never had so much pain, all at once thru out my body, for so long. Felt like my muscles were under attack.
The force feeding, did that much also. Food was often like cardboard, no matter what it was. Have you tried shakes, Carnation instant breakfast AKA ...drinking your nutrients? When you go days with little ‘fuel’, it hurts you!
BTW....before my dx last May... I have had drug phobia for YEARS! Took few, rarley even took antibiotics, terrified of even a CT with the IV. My family and friends were so worried I'd never be able to inject and take drugs to treat. TX has brought me a long way in that! Tho still don't like to, I will now instead of suffer or to cure myself.
You hang on, feel better, it will pass :) Keep checking in tho.
LL
Hey medi girl - as crazy as it sounds you hit the nail on the head again - first the water then the narcotics. I had been taking Darvocett the last few day (for bad cramps and RA) well just before I read your post I had taken a whole one (normally just take 1/2) We'll sure enough my heart went crazy and the chest pain and dizzyness got alot worse. I mentiond it to my doc and between my low blood presure and the dehydration that was the last thing I needed. I have drank constantly since speaking with him and am finally feeling a little better. (He is a GREAT Doc - we talked on the phone for at least 1/2 hr and it was 7pm)
So thanks for the heads up - but yea under normal situations meds are our friends..
Lady and Imr - ditto on the Introvert Revolution...who is this person in my normally fun loving, crazy, busting with babble and hugs body? She can go back to where she came from NOW..oh great now split personality is setting in...
Lorainne - Damn migrains anyway - mine did start getting better last week. I take Maxalt during the night if I have a migrain and Zomig during the day - it keeps me awaker at night (yes awaker is a word...cuz I'm already awake...) I usually just take 1/2 of them...can't believe your problems getting meds...boy so cal is the opposite. Seems like there should be an online med ebay for all the left overs out there...hmmmm
So thanks for the heads up - but yea under normal situations meds are our friends..
Lady and Imr - ditto on the Introvert Revolution...who is this person in my normally fun loving, crazy, busting with babble and hugs body? She can go back to where she came from NOW..oh great now split personality is setting in...
Lorainne - Damn migrains anyway - mine did start getting better last week. I take Maxalt during the night if I have a migrain and Zomig during the day - it keeps me awaker at night (yes awaker is a word...cuz I'm already awake...) I usually just take 1/2 of them...can't believe your problems getting meds...boy so cal is the opposite. Seems like there should be an online med ebay for all the left overs out there...hmmmm
Mikkimoe-or whichever one you are today,lol!....Shall we name your other 'self'?
Meds are strict (anywhere I go) in Fl. but really should be as people will kill for some of them. The Vicodin, Lortab, etc. addiction rates are soariing. I'm pretty careful on whatever I take, I can see why they can become a 'best friend' :). BUT, I do not understand going thru this tx with some of these Dr.'s saying 'take 2 tylenol'! Some of us have some serious pain and I'd have to take too much tylenol to help at all, also bad on the liver.
I have MVP, so heart rates, rhythms irregular are common for me (won't take the serious meds for that either). My BP is always right on or a bit low. I never heard of a pain pill doing that! I take ½'s tho, if that wouldn’t help, take the other ½. I was given celebrex (read on it, won’t do it!), which my father had bad reactions to also. I didn’t want to introduce even more new drugs into my body thru tx so just…as I told the Doc…..sticking with what I have done, know about. I’m always leary of any new drug. Glad I drew the ol’ SOC in my trial also, not the new one (my fears, and in this trial, worked out well.) Post tx migraines are gone :) Muscle pain getting less.
Oh, and my other personality is gone now too, along with that ONLY good side of increased breast size, dammit! LOL!!
LL
Meds are strict (anywhere I go) in Fl. but really should be as people will kill for some of them. The Vicodin, Lortab, etc. addiction rates are soariing. I'm pretty careful on whatever I take, I can see why they can become a 'best friend' :). BUT, I do not understand going thru this tx with some of these Dr.'s saying 'take 2 tylenol'! Some of us have some serious pain and I'd have to take too much tylenol to help at all, also bad on the liver.
I have MVP, so heart rates, rhythms irregular are common for me (won't take the serious meds for that either). My BP is always right on or a bit low. I never heard of a pain pill doing that! I take ½'s tho, if that wouldn’t help, take the other ½. I was given celebrex (read on it, won’t do it!), which my father had bad reactions to also. I didn’t want to introduce even more new drugs into my body thru tx so just…as I told the Doc…..sticking with what I have done, know about. I’m always leary of any new drug. Glad I drew the ol’ SOC in my trial also, not the new one (my fears, and in this trial, worked out well.) Post tx migraines are gone :) Muscle pain getting less.
Oh, and my other personality is gone now too, along with that ONLY good side of increased breast size, dammit! LOL!!
LL
I'm glad Lauri asked after all of you .... I'm a bit alarmed at how tough things are going for each of you.
Mikki ... has the adjustment with increased water and altered narcotic intake helped you? How are you feeling now?
lmr ... I'm sorry about your migraines, that's tough to take. I wonder if it helps to post what anyone else here had prescribed for them for migraines? Does your doc know about them? Isn't it the doc who should be decided what gets prescribed with the PA as go between? how are you doing with keeping up with work? Did you go to half days?
Medicmommy ... concerned about your HGB .. what does the doc say about that?
Kimmypoo .. you mentioned trying to deal with the sides... how are things going with you?
I can relate on the isolation .. a number of things contributing to that. If I actually DO tell people how I'm doing, then the reactions I get are not helpful .. either I'm concerned that they're worrying too much when things are actually under control and I can't change how it is.. so please DON'T worry about me .. or they start telling me to take more iron or things like that, that don't make any difference and it's too wearisome educating them about my health and what is required so I'd rather simply say nothing. I also simply want the freedom to rest when I need to so that I can keep on going with what I can.
What is encouraging is that you are all UND!!! (Please correct me if I'm wrong.) Hang in there, get the medical attention you need. Mikki, I'm glad you talked to your doctor about what's going on and that, as a result, you were able to get relief. I hope the same for the rest of you and Mikki, I hope this recent change helps and holds.
Take care all of you .. rooting for you all the way through.
Trish
Mikki ... has the adjustment with increased water and altered narcotic intake helped you? How are you feeling now?
lmr ... I'm sorry about your migraines, that's tough to take. I wonder if it helps to post what anyone else here had prescribed for them for migraines? Does your doc know about them? Isn't it the doc who should be decided what gets prescribed with the PA as go between? how are you doing with keeping up with work? Did you go to half days?
Medicmommy ... concerned about your HGB .. what does the doc say about that?
Kimmypoo .. you mentioned trying to deal with the sides... how are things going with you?
I can relate on the isolation .. a number of things contributing to that. If I actually DO tell people how I'm doing, then the reactions I get are not helpful .. either I'm concerned that they're worrying too much when things are actually under control and I can't change how it is.. so please DON'T worry about me .. or they start telling me to take more iron or things like that, that don't make any difference and it's too wearisome educating them about my health and what is required so I'd rather simply say nothing. I also simply want the freedom to rest when I need to so that I can keep on going with what I can.
What is encouraging is that you are all UND!!! (Please correct me if I'm wrong.) Hang in there, get the medical attention you need. Mikki, I'm glad you talked to your doctor about what's going on and that, as a result, you were able to get relief. I hope the same for the rest of you and Mikki, I hope this recent change helps and holds.
Take care all of you .. rooting for you all the way through.
Trish
Hiya! Long time no see! How are you doing? don't worry about us...for the most part, the sides aren't too bad...Annoying more than anything (I speak for myself here!)...I talked to liver doc yesterday...he's more concerned about the hyperthyroid issue than the HGB...I told him I was feeling increasingly weak and wobbly, but he still insists that I'm "stable"...I'd hate to think what "unstable" would be like !LOL Last labs showed HGB at 9.4, HCT at 28, and ANC at 700...I was strongly considering going back to work by the end of the month...Yeah, right...
I'm so glad LL asked about everyone...I've been wondering too...
Well, it's nice to see you all again! For the moms...happy Mom's day! ~Melinda
I'm so glad LL asked about everyone...I've been wondering too...
Well, it's nice to see you all again! For the moms...happy Mom's day! ~Melinda
I know...it's like "hail, hail, the gang's all here!" ... we all started into this about the same time.
I'm doing okay. My ANC has stabilized and my HGB floats in the 10.** so it's tolerable. I've totally adjusted how I do things day to day and for a person who used to run to avoid taking stairs sometimes is a big adjustment but you do what you gots to do. Having said that, I'm still remarkably busy with many pursuits, all of which require brainpower more than physical energy and my job is analytical, so I think I'm able to hold the brain fog off to a great degree as a result because my brain gets a constant workout. I miss the running though....and I've been thinking I might just take a test run and see how it goes. Just maybe. Scared to death I'll wear myself down too much and the virions will come back though...so I'm not sure what I'm going to do with that, no idea if that's even a rationale thought.
I deal with the fatigue when it hits and I deal with the nausea .. I eat alot of noodles and soda crackers, that's about all I can rely on .. and I eat licorice here and there too but soda crackers seem to work best. Tomorrow I'm making steak and eggs for breakfast and my son is coming over and I'm going to eat them, dammit!! :)
lmr..I get what you mean about it being worse AFTER you eat .. I feel like today is a good eating day.. I eat.. and then I pay for it. Sometimes worse than others. Not losing much weight though so it can't be all that bad, eh?
We'll all hang in there together and get each other through...
another one missing though... pKinCA... I haven't written to you in awhile, I'm having a harder time keeping up with people as I only have so much time between rest and study periods and trying to make sure I have enough energy to work through the week...just the same...if you're reading this, please let us know how you're doing....and hope you are well.
Take care all.
Trish
I'm doing okay. My ANC has stabilized and my HGB floats in the 10.** so it's tolerable. I've totally adjusted how I do things day to day and for a person who used to run to avoid taking stairs sometimes is a big adjustment but you do what you gots to do. Having said that, I'm still remarkably busy with many pursuits, all of which require brainpower more than physical energy and my job is analytical, so I think I'm able to hold the brain fog off to a great degree as a result because my brain gets a constant workout. I miss the running though....and I've been thinking I might just take a test run and see how it goes. Just maybe. Scared to death I'll wear myself down too much and the virions will come back though...so I'm not sure what I'm going to do with that, no idea if that's even a rationale thought.
I deal with the fatigue when it hits and I deal with the nausea .. I eat alot of noodles and soda crackers, that's about all I can rely on .. and I eat licorice here and there too but soda crackers seem to work best. Tomorrow I'm making steak and eggs for breakfast and my son is coming over and I'm going to eat them, dammit!! :)
lmr..I get what you mean about it being worse AFTER you eat .. I feel like today is a good eating day.. I eat.. and then I pay for it. Sometimes worse than others. Not losing much weight though so it can't be all that bad, eh?
We'll all hang in there together and get each other through...
another one missing though... pKinCA... I haven't written to you in awhile, I'm having a harder time keeping up with people as I only have so much time between rest and study periods and trying to make sure I have enough energy to work through the week...just the same...if you're reading this, please let us know how you're doing....and hope you are well.
Take care all.
Trish
I am so pleased to hear how everyone is doing. Even the hard stuff...
I wonder if my naturally LOW blood pressure intensifies the fatigue, dizziness, HGB sx? I feel like I should be hunched over an oxygen tank just to get from the parking lot to my classroom! I'm 38 for the love of Pete! I used to run 3 miles!!!! (I agree Trish- that is something that is easy to miss, hard to replace. My advice, for what it's worth, is WAIT. Overdoing it is such a risk and paying the piper is just TOO painful!)
I am working 3 days/ week. I actually set a cot up in my "seclusion/time-out" room!!! I lie down when the kids are out for PE or lunch, when my para takes over with them. It feels weird, but gets me through the day on the rough ones.
LL- I have tried Carnation Instant Breakfast, and can usually get it down. Believe it or not, (and I'm sure you will!) it almost seems like too much work to stir it up some days. PA-THE-TIC! Animal crackers are also tolerable. Saltines make me sick, for some reason. The muscle pain has set in for me, as well. I was concerned that it was "abnormal" so I'm glad to hear it's not. Joints are so sore, as well. Feels like I'm being pulled apart! I just hurt everywhere, all the time.
Mikki~ I vote for the ebay med exchange!!!! That would certainly make my life a whole lot easier!
Lastly- I don't know what is typical for the "riba rash", and I lotion/oil/moisturize like a mad woman, but I have a new skin "condition" that is really painful. I get these little blisters that then split down the middle and become very, very sore. Mostly on my hands, but now showing up on my legs, and even a couple on my arms. They remind me of the mouth sores, in a way. (which, BTW, are still coming and going frequently. I now have them in my nose and even one ear, just for extra fun!) Maybe some are more prone to this than others? I just haven't heard this blister-type thing mentioned before. (that I remember anyway!)
Pk~ do post and let us all know how things are going for you! It's just not "the gang" without your input!!!!!
It helps so much to make this connection. I will do better at staying connected again. I think I just let it all get me too down.
(((((((((((((((((((((( hugs to all ))))))))))))))))))))))
~lorraine
I wonder if my naturally LOW blood pressure intensifies the fatigue, dizziness, HGB sx? I feel like I should be hunched over an oxygen tank just to get from the parking lot to my classroom! I'm 38 for the love of Pete! I used to run 3 miles!!!! (I agree Trish- that is something that is easy to miss, hard to replace. My advice, for what it's worth, is WAIT. Overdoing it is such a risk and paying the piper is just TOO painful!)
I am working 3 days/ week. I actually set a cot up in my "seclusion/time-out" room!!! I lie down when the kids are out for PE or lunch, when my para takes over with them. It feels weird, but gets me through the day on the rough ones.
LL- I have tried Carnation Instant Breakfast, and can usually get it down. Believe it or not, (and I'm sure you will!) it almost seems like too much work to stir it up some days. PA-THE-TIC! Animal crackers are also tolerable. Saltines make me sick, for some reason. The muscle pain has set in for me, as well. I was concerned that it was "abnormal" so I'm glad to hear it's not. Joints are so sore, as well. Feels like I'm being pulled apart! I just hurt everywhere, all the time.
Mikki~ I vote for the ebay med exchange!!!! That would certainly make my life a whole lot easier!
Lastly- I don't know what is typical for the "riba rash", and I lotion/oil/moisturize like a mad woman, but I have a new skin "condition" that is really painful. I get these little blisters that then split down the middle and become very, very sore. Mostly on my hands, but now showing up on my legs, and even a couple on my arms. They remind me of the mouth sores, in a way. (which, BTW, are still coming and going frequently. I now have them in my nose and even one ear, just for extra fun!) Maybe some are more prone to this than others? I just haven't heard this blister-type thing mentioned before. (that I remember anyway!)
Pk~ do post and let us all know how things are going for you! It's just not "the gang" without your input!!!!!
It helps so much to make this connection. I will do better at staying connected again. I think I just let it all get me too down.
(((((((((((((((((((((( hugs to all ))))))))))))))))))))))
~lorraine
Kimmy and Mikki - Congratulations on the rapid resposnes! Sorry about the side effects, especially the migraines. I get those also. I take Imatrex, which generally works. But it works best if I take a Lortab with it as it helps with relaxing and deals with the muscle aches, etc. I get a fairly good night's sleep and the migraine is gone. Sometimes I have to take a second Imatrex dose (50 mg). - works for me.
Best of luck to all of you with these bad SX.
Best of luck to all of you with these bad SX.
I'm so glad all are 'getting' together here :)
PKinca is okay, PM'd me back yesterday. She'd had some reduction in tx, and it hasn't gone well but I think it's best to let her post the details. She is ok tho.
Being able to be alone so much thru tx was a blessing for me and your right Trish, no matter how we try to explain how we DO feel, they can't understand without having been there, even tho they may want to.
One thing! On the running.... I also am a non-stop, never sit down until bedtime woman. I suffered bad when I even tried to do that. I also got a lot of advise towards not over doing, your body needs what little it has with these drugs to fight the virus and to just keep going. What 'fuel' we use is not replenished as it normally would be. Just a tip. To quote a friend, it's like an energy savings account, the more you use, the less that is left in bank. Yep, and you soooo pay the 'tx piper'.
Imr......"Believe it or not, (and I'm sure you will!) it almost seems like too much work to stir it up some days".......
Oh I well know what you mean :) Many days I'd lay here, actually hungry, and just not have the energy to get up and make a smoothie! Not even cook, just a smoothie! I was lucky tho, one of my sons was here a lot and always made me something when I wouldn't leave the room all day. Of course, another son would do that too, but he is an AWFUL cook,lol. I'd eat -soon as he wasn't looking, the dog got it,lol! @ week 7-10 ish, I'd have starved if not for them!
I am so amazed by you girls working! I did do some work at home, and also tried to do all the 'keep the brain active' tips, but get up , go to work.....not.
Medicmommy....as a medic :) you know 9.4 Hgb is pretty low. If mine went below 10, in the trial, I'd be taken out of trial (no rescue drugs) so I had to reduce meds. At 10 Hgb I'd lay in bed all day, stare across the room at the bathroom until my bladder was going to burst! Wobble there and wobble back to bed!
Keep up the virus kickboxing ladies :) Wishing you some of those feel good days.
LL
PKinca is okay, PM'd me back yesterday. She'd had some reduction in tx, and it hasn't gone well but I think it's best to let her post the details. She is ok tho.
Being able to be alone so much thru tx was a blessing for me and your right Trish, no matter how we try to explain how we DO feel, they can't understand without having been there, even tho they may want to.
One thing! On the running.... I also am a non-stop, never sit down until bedtime woman. I suffered bad when I even tried to do that. I also got a lot of advise towards not over doing, your body needs what little it has with these drugs to fight the virus and to just keep going. What 'fuel' we use is not replenished as it normally would be. Just a tip. To quote a friend, it's like an energy savings account, the more you use, the less that is left in bank. Yep, and you soooo pay the 'tx piper'.
Imr......"Believe it or not, (and I'm sure you will!) it almost seems like too much work to stir it up some days".......
Oh I well know what you mean :) Many days I'd lay here, actually hungry, and just not have the energy to get up and make a smoothie! Not even cook, just a smoothie! I was lucky tho, one of my sons was here a lot and always made me something when I wouldn't leave the room all day. Of course, another son would do that too, but he is an AWFUL cook,lol. I'd eat -soon as he wasn't looking, the dog got it,lol! @ week 7-10 ish, I'd have starved if not for them!
I am so amazed by you girls working! I did do some work at home, and also tried to do all the 'keep the brain active' tips, but get up , go to work.....not.
Medicmommy....as a medic :) you know 9.4 Hgb is pretty low. If mine went below 10, in the trial, I'd be taken out of trial (no rescue drugs) so I had to reduce meds. At 10 Hgb I'd lay in bed all day, stare across the room at the bathroom until my bladder was going to burst! Wobble there and wobble back to bed!
Keep up the virus kickboxing ladies :) Wishing you some of those feel good days.
LL
Isn't that what we called ourselves - gee I guess it's a good name guzz it's kickin our butts!!!!
Well I'm sorry to say - I'm NOT doing better. The hydration was good - helped with the migrain - but the extreme fatigue and shortness of breath and heart issues worsened. So bad that I can't even stand without almost passing out....so completely bed ridden.
Spoke with Doc again and he say's since my labs are OK - it's the Peg causing the problems - With the effects of the Enbrel it's just to much for my massive 101 lb frame. He is going to have me reduce it by about 1/3. He says to stay with the Riba dose for now since it is weight based and if it doesn't get better I'll reduce it as well. The good news is I'm 2B and was UND at 3.5 weeks - bad news is I'm barely 6 weeks in.
Anyone else with the heart issues? Pain, tightness, can't breath, palpatatios, beats out of your chest constantly and horrible Tinnitis.
I also have all the other fun things - mouth sores, rash (like mouth sores) and here's the worst thing - my tounge stuck to the top of my mouth when I sleep and it actually peeled skin off of it when I woke - needless to say the only thing I can consume is liquids (protien drinks and vanilla yougurt) ouuuuchy
Glad you guys are here - it would be a cold lonely bed without you - in a literal sense that is.
PS there is another thread that talks about reduction in meds: http://www.medhelp.org/posts/show/515379
Well I'm sorry to say - I'm NOT doing better. The hydration was good - helped with the migrain - but the extreme fatigue and shortness of breath and heart issues worsened. So bad that I can't even stand without almost passing out....so completely bed ridden.
Spoke with Doc again and he say's since my labs are OK - it's the Peg causing the problems - With the effects of the Enbrel it's just to much for my massive 101 lb frame. He is going to have me reduce it by about 1/3. He says to stay with the Riba dose for now since it is weight based and if it doesn't get better I'll reduce it as well. The good news is I'm 2B and was UND at 3.5 weeks - bad news is I'm barely 6 weeks in.
Anyone else with the heart issues? Pain, tightness, can't breath, palpatatios, beats out of your chest constantly and horrible Tinnitis.
I also have all the other fun things - mouth sores, rash (like mouth sores) and here's the worst thing - my tounge stuck to the top of my mouth when I sleep and it actually peeled skin off of it when I woke - needless to say the only thing I can consume is liquids (protien drinks and vanilla yougurt) ouuuuchy
Glad you guys are here - it would be a cold lonely bed without you - in a literal sense that is.
PS there is another thread that talks about reduction in meds: http://www.medhelp.org/posts/show/515379
Hi Everyone...
I'm still here, hangin' around, reading mostly...
I've been off of all meds since the end of March as I had horrific reaction to tx that was unlike anything I've read on the forum. I'd tried to reduce riba and it seemed to be working for a week or so, but the sx came back worse than ever so I had to stop taking all meds. It took about 3 weeks for the sx to go away completely and during that time I was really terrified because it seemed like I was getting worse, not better. Had I not improved, my dr was going to do brain scan next, as most of my sx were neurological in nature. Fortunately, I did get better and this was not necessary!
To say I'm disappointed is a major understatement because I really really did try hard to get through this... and, my 4-week VL was UND so most likely I would have reached SVR had I been able to hang in there... :-( Gonna test my VL again at the end of June which will be 3 months since end of tx.
Now, am feeling almost normal, but I do get winded and tire easily still... Trying to re-enter the real world a little bit more each day!
Thanks for asking about me! I'll keep in touch from time to time...
pK
PS Everyone who started with me seems to be RVR (great news!) and doing mostly ok... rooting you all on!!
I'm still here, hangin' around, reading mostly...
I've been off of all meds since the end of March as I had horrific reaction to tx that was unlike anything I've read on the forum. I'd tried to reduce riba and it seemed to be working for a week or so, but the sx came back worse than ever so I had to stop taking all meds. It took about 3 weeks for the sx to go away completely and during that time I was really terrified because it seemed like I was getting worse, not better. Had I not improved, my dr was going to do brain scan next, as most of my sx were neurological in nature. Fortunately, I did get better and this was not necessary!
To say I'm disappointed is a major understatement because I really really did try hard to get through this... and, my 4-week VL was UND so most likely I would have reached SVR had I been able to hang in there... :-( Gonna test my VL again at the end of June which will be 3 months since end of tx.
Now, am feeling almost normal, but I do get winded and tire easily still... Trying to re-enter the real world a little bit more each day!
Thanks for asking about me! I'll keep in touch from time to time...
pK
PS Everyone who started with me seems to be RVR (great news!) and doing mostly ok... rooting you all on!!
Hey, if you didn't know...it takes 3-6 months to clear the riba from your system...I'm crossing all my fingers and toes that you remain UND forever...My prayers are with you...(((((((((((((((((((((((((((((((((HUGZ)))))))))))))))))))))))))) ~Melinda
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