Aa
Completly frustrated
Thinking about throwing in the towel. Meds have been approved, triage nurse and docs assistant working on payment options, doc says, Don't worry, nobody has been turned down, be positive...Feeling on top of the world. Went to pharmacy to get the mood stabalizers which were supposed to have been ordered by my primary physician in AUG, and found no meds. Called primary, as the were recommended through a psychopharm consult that SHE ordered, and she has decided that treatment is too risky and won't prescribe Lithium/Zoloft! "Too hard to monitor" and now she wants me to get a psychiatrist to do the scripts. Can't get an appointment for 2 to 3 months! Doc says primary's can't prescribe Lithium, but I can take any ssri that she recommends. So my choices are, take celexa start tx and if I go manic like last time, ER will get immediate Psyche consult (if I don't do any harm first), find a shrink out of my insurance coverage that will agree with original consult and pay out of pocket, which also means 3 docs working on me and none of them communicating, only GI doc versed in hep-c tx, or letting nature/hep c, psorosis take it's course. I'm wishing I'd never heard of the new tx. Life was so simple! Plus the height of my appointment on Monday with the GI was when he said I'd only have to take the interferon once a week compared to 5mil units I used to take 3x a week...It boils down to Primary Care only KNOWING how to refer, not manage a patients care, even after she has clear cut directions from the director of the psyche unit on how to prescribe! He did the consult. Bet if I chose not to do the hep-c tx and complained of fatique and severe joint pain, I'd get an ssri/narcotic script in a NY minute....But I'm gettin just too tired of trying to work the system. 8 different appointments in 3 months, and she tells me now she won't prescribe the mood stabalizer. Bobby, (oldsarge)
All my "baselines" have been done, including optics. 11 Years ago I swore I'd never put myself through this tx again, so I have put much thought and research into it. My mind, spelling, typing etc is shot, so I apologize if my posts are long or confusing. I start out trying to drive from VT to new NY and end up taking a shortcut through Frisco. I had put hep-c into the back of my mind, and was enjoying what I had accepted as a shorted life, not that I lost hope, just took responsibility for some bad choices..So I too am amazed in the lack of knowledge in the med community, and since I had been a substance abuse therapist for 17 years, KNOW how ya can "come out sicker than when you went in". I do really appreciate your concerns, keep em coming! There's always something I missed Bobby
Pls read all my posts and introduction from when I began this group. first, I'm down to maybe the "last round-up". I have cirrhosis, and after 3 other treatment w'combo,11 years ago, my liver functions started going "all over the place. Had it not been for the new drug, the transplant list is my only option. I HAVE a GASTRO doc, and he has a team, so they take care of all "Intrernal meds, labs etc" . He suggested a psych/pharm cosult and the director of that dept said if the lithium/zolft got you through last time, lets use it again, BEFORE you run into the psych issue that got you on them last time in the first place. He ordered my Primary to prescribe in order that I not have to drive into the city to see 3 different docs while undergoing tx. The primary had issue with PRESCRIBING and FOLLOW ups w/ the lithium which I had been on for 6 years after the last tx, no psych hx untill 2 years and 3 months of interferon in 2000. The patient advocate got the two docs to talk, and she agreed to to prescribe for me, and that the director of the psych dept, agreed to consult w/her if I had any issues regarding the lithium...just like last time, I will be taking 900mgs of Lithium, which is where by blood level stayed stable for 6 years, and only 50 mgs of zoloft compared to the 250 mgs last time that I had been on for 2 and a half years beginning during my 1st combo treatment I lost the use of my thyroid during the first pure interferon tx, have already had bleeding varicies, I trust the Hep doc, the psych doc and the primary, who ordered a lab tomorrow, 5 days after starting the lithium and I will see her on Friday to get the "get-go" to up it from 600 to 900....
I'm not going into this half cocked, my wife is also an RN, Psych dept, for the VNA. She insists I do the footwork, but keeps an eye out for my interactions with the system.
My "job" in the army was to patrol the dmz in S. Korea, the location of the most 'mine fields " in the world..I re-upped 2x to stay there, mostly cause I disliked newbies getting blown away, nor trying to teach them how to play "hop-scotch" while trying to spot snipers...I'm well versed in hep-c tx, psych issues, and strolling through the scenic halls of the of the Gastro's, with mine fields behind every door. As for the PTSD, what most likely brought the symptoms to the suface was using a needle for the interferon, and in the beginning having to mix the interferon from one bottle to the next. I was on such a death mission when I had hit bottom in'83, I had no issue pickin' up a clogged "point" off the shootin' gallery floor, using a guitar string to clean it out and jabbing myself till I felt safe enough to go back on the street and not hurt anybody...Here I was 17 years later jabbin myself in in my tummy, just to "put me into the same symptoms as withdrawal". Now its only one shot, more likely like a bad hangover, plus I have the diet, support scripts, and you watchin out for my back. I appreciate your concern, and if my posts start turnin' "dark" I hope you notice, cause I am open, and have learned to let let people know my "Secret,secrets". Also, worst time of year for my PTSD is hot, humid, summer days, so there's one trigger down! Bobby
I'm not going into this half cocked, my wife is also an RN, Psych dept, for the VNA. She insists I do the footwork, but keeps an eye out for my interactions with the system.
My "job" in the army was to patrol the dmz in S. Korea, the location of the most 'mine fields " in the world..I re-upped 2x to stay there, mostly cause I disliked newbies getting blown away, nor trying to teach them how to play "hop-scotch" while trying to spot snipers...I'm well versed in hep-c tx, psych issues, and strolling through the scenic halls of the of the Gastro's, with mine fields behind every door. As for the PTSD, what most likely brought the symptoms to the suface was using a needle for the interferon, and in the beginning having to mix the interferon from one bottle to the next. I was on such a death mission when I had hit bottom in'83, I had no issue pickin' up a clogged "point" off the shootin' gallery floor, using a guitar string to clean it out and jabbing myself till I felt safe enough to go back on the street and not hurt anybody...Here I was 17 years later jabbin myself in in my tummy, just to "put me into the same symptoms as withdrawal". Now its only one shot, more likely like a bad hangover, plus I have the diet, support scripts, and you watchin out for my back. I appreciate your concern, and if my posts start turnin' "dark" I hope you notice, cause I am open, and have learned to let let people know my "Secret,secrets". Also, worst time of year for my PTSD is hot, humid, summer days, so there's one trigger down! Bobby
Forgive me for what I'm about to say but choosing to treat with somebody that knows nothing about hep C, the new treatment or how to adjust the Lithium is like choosing to go into battle with a group of inexperienced recruits instead of the experienced soldiers. Why would you want to do that?
Your doctor has already proven she knows nothing about Hep C or treatment.
You see, Lithium can cause weight gain, high blood sugar, insulin resistance and in some cases diabetes. All the things that can make Hep C treatment ineffective.
" I'm being prescribed the Lithium at a dose that may not even show up in a lab as "theraputic level". It's just there to stabalize my mood not treat a bi polar condition. "
------
But you're taking it with Zoloft ....and Zoloft can raise the level of Lithium.
From " Drug interactions between Lithium and Zoloft"
"SSRIs (like Zoloft) may elevate the plasma concentrations of lithium and increase the risk of lithium toxicity."
And......
"Lithium may enhance the pharmacologic effects of selective serotonin reuptake inhibitors (SSRIs) and potentiate the risk of serotonin syndrome, which is a rare but serious and potentially fatal condition"
http://www.drugs.com/drug-interactions/lithium-with-zoloft-1477-0-2057-1348.html
"Lithium is "filtered through" the kidneys, and at the dose I'll be taking will have little affect on the kidney's, if at all."
----------
That reminds me, you're supposed to have a creatinine clearance test done before starting Lithium to make sure your kidneys can clear it.
Bottom line.....Lithium is a dangerous medication that should always be prescribed and followed by a psychiatrist, but it makes no sense to take a dangerous medication that can impact your treatment when there are other options (like Ziprasidone which is an anti psychotic that doesn't cause weight gain or high blood sugar.).
By the way, PTSD can also cause high blood sugar and insulin resistance.
"Effects of acute psychological stress on glucose metabolism and subclinical inflammation in patients with post-traumatic stress disorder."
http://www.ncbi.nlm.nih.gov/pubmed/20665427
Co
Your doctor has already proven she knows nothing about Hep C or treatment.
You see, Lithium can cause weight gain, high blood sugar, insulin resistance and in some cases diabetes. All the things that can make Hep C treatment ineffective.
" I'm being prescribed the Lithium at a dose that may not even show up in a lab as "theraputic level". It's just there to stabalize my mood not treat a bi polar condition. "
------
But you're taking it with Zoloft ....and Zoloft can raise the level of Lithium.
From " Drug interactions between Lithium and Zoloft"
"SSRIs (like Zoloft) may elevate the plasma concentrations of lithium and increase the risk of lithium toxicity."
And......
"Lithium may enhance the pharmacologic effects of selective serotonin reuptake inhibitors (SSRIs) and potentiate the risk of serotonin syndrome, which is a rare but serious and potentially fatal condition"
http://www.drugs.com/drug-interactions/lithium-with-zoloft-1477-0-2057-1348.html
"Lithium is "filtered through" the kidneys, and at the dose I'll be taking will have little affect on the kidney's, if at all."
----------
That reminds me, you're supposed to have a creatinine clearance test done before starting Lithium to make sure your kidneys can clear it.
Bottom line.....Lithium is a dangerous medication that should always be prescribed and followed by a psychiatrist, but it makes no sense to take a dangerous medication that can impact your treatment when there are other options (like Ziprasidone which is an anti psychotic that doesn't cause weight gain or high blood sugar.).
By the way, PTSD can also cause high blood sugar and insulin resistance.
"Effects of acute psychological stress on glucose metabolism and subclinical inflammation in patients with post-traumatic stress disorder."
http://www.ncbi.nlm.nih.gov/pubmed/20665427
Co
Sounds like VA stuff ???? Good Luck Sarge, I am praying that my AD keeps working with INC. It is on the list for loosing some of its potential. Ive been on it for 10 years and I am not switching now. So we will keep our fingers crossed :)
What a great story! Sounds like your phone conversation worked wonders, just amazing. Glad you got your meds prescribed, we'll all be here as you keep moving forward. Congratulations, Bobby.
Lapis
Lapis
With level head and my wife by my side, I called out healthcare sytems "patient advocate". She pulled my records, easily done now that it's all computerized, followed the trail of notes and stated, this is appalling! What would I like to have be done and what outcome would satisfy me. I said, I'm trying to avoid an "ethical complaint" for either incompetent or discriminatory practices, get tx in a timely, cost effective manner, as I could see no other reason for the Primary to not follow a medical directors (from their systems "Mood and anxiety disorders unit") and just get the prescription. She kindly explained, the office my primary works out of has a protocol that she is following. My response was that, I wouldn't personalize the complaint, I would address it to that particular office. She held me on the line, made two phone calls and very politely explained that inexperience, not incompetent was the issue. That the docs do not have the time nor the clinical expertise to treat ALL issues, however, since this is a teaching hospital (connected with the university of VT), the primary will prescribe, oversee in a expeditious manner, work the extra hours, to gain knowledge of both Hep-c, courses of treatment and the use of "prophylactic treatment" to ensure patients safety during treatment.
I agreed that this was the outcome that I desired. She then told me it's no longer the squeaky wheel that gets the attention, sometimes you have to "clank". I apologized for taking up her time, and asked if I should find another primary doc. She told me no, your primary is gonna become your best advocate, as I'm going to assist in her ability to gain knowledge by being her patient.
15 Minutes later, the phone rang, CVS had my scripts, " 1 lithium in the eve, if tolerated, start zoloft after 4 days in the morn, then take 2 lithium at bedtime for 4 more days then up the Zoloft to 2 pills in the am. Get a base line lab, then start Victrellis. Just what the doc prescribed Aug 8th.
Just a note, I became a therapist in 1985 and worked with and advocated for patients who had what was then called "the virus", later HIV/AIDS. Hence the notion of the ethical complaint. Some how, somewhere I thought the system had learned after all these years. What I have learned in the last 3 months is that if I don't assertively advocate for myself, have a place like this board to bounce my feelings off and get many different "aspects" of how others see my issues or how I'm not pointing them out correctly, I cannot see or hear clearly enough to actually "Zero In" on my own dilemna.. THANK YOU FOR ALL YOUR HELP!!! .It is so hard to focus just with the Hep-c...And when God starts throwing curb balls, I can only think "If I knew I was gonna live this long, I would have taken better care of myself
YIP PIE-KI-O!!! Bobby (oldsarge)
I agreed that this was the outcome that I desired. She then told me it's no longer the squeaky wheel that gets the attention, sometimes you have to "clank". I apologized for taking up her time, and asked if I should find another primary doc. She told me no, your primary is gonna become your best advocate, as I'm going to assist in her ability to gain knowledge by being her patient.
15 Minutes later, the phone rang, CVS had my scripts, " 1 lithium in the eve, if tolerated, start zoloft after 4 days in the morn, then take 2 lithium at bedtime for 4 more days then up the Zoloft to 2 pills in the am. Get a base line lab, then start Victrellis. Just what the doc prescribed Aug 8th.
Just a note, I became a therapist in 1985 and worked with and advocated for patients who had what was then called "the virus", later HIV/AIDS. Hence the notion of the ethical complaint. Some how, somewhere I thought the system had learned after all these years. What I have learned in the last 3 months is that if I don't assertively advocate for myself, have a place like this board to bounce my feelings off and get many different "aspects" of how others see my issues or how I'm not pointing them out correctly, I cannot see or hear clearly enough to actually "Zero In" on my own dilemna.. THANK YOU FOR ALL YOUR HELP!!! .It is so hard to focus just with the Hep-c...And when God starts throwing curb balls, I can only think "If I knew I was gonna live this long, I would have taken better care of myself
YIP PIE-KI-O!!! Bobby (oldsarge)
I know! The medical system is so frustrating. You're right, they are quick to treat with pain meds, etc, and sometimes important stuff does get missed. I am certainly not trying to defend your doctor. Just trying to offer you some support along the way. I had been off AD's for years and had to start taking them again during tx. I can imagine how the PTSD would come up during tx, just adding so much more to what you're already dealing with! Again, sorry the system is giving you such challenges, and hoping you'll find a way to navigate that works for you.
Lapis
Lapis
It is cirrosis, I had a manic episode the last time I was on tx in the 3rd month, it actually started about a month and a half into tx, and was diagnosed w/bi'polar disorder induced by the hep-c tx. Scared to death of coming off the lithium, it took 3 years before I was able to taper down, deal with the anxiety, and have the VA at the time, treat me for PtSD....TX failures and inability to sleep set off the PTSD. Haven't seen a shrink in 4 years now. Back in dec, my liver fuctions started going haywire. I have little left of un touched liver damage, so it's right time for another shot at tx. GI doc doesn't support transplant as he says, "My lifestyle will not tolerate the many anti rejection meds I'd have to take and their sides.
The issue for me is that I NEED to trust my docs. The primary care had the information Aug 2nd, and didn't relay it me. If she is sitting on a lab result and doesn't get back to me while I'm being treated, only God knows where and what specialist I'll end up with, who may want to take me off the hep tx or treat me for something else.. As for getting a new primary? 4 month waiting list. I can understand her issues, however I'm being prescribed the Lithium at a dose that may not even show up in a lab as "theraputic level". It's just there to stabalize my mood not treat a bi polar condition.
I had mentioned in an earlier post about my buddy who died after a liver transplant. His numbers went wacky, and his spot on the transplant list was high, then 4 months after the wacky labs, he developed tumors/cancer, and our doc got him switched from the hep transplant list to the cancer transplant list. Good move, however the new liver was no match for the hep c, and he was back on the "combo" in 3 months. I'm getting labs monitored every 45 days. You'd think the primary care could be just a bit ethical, and not put me in a holding pattern. If I don't call the the GI doc and tell them I don't have the stabalizers, the meds will be at my door in 3 weeks, then it's up to the meds to do their work. As close as I'm ready for this, which took a hell of a lot of thought and advice from others, the system, with all my records and consults, has not changed a bit in 10 years.
I'm sorry to "dump" like this, but on the other hand, I'm not sorry about voicing about how I'm being treated...When a doc "misses" the report, doesn't call the patient and worry's more about following office protocol than treating the patient, some thing is extremely wrong.
My posts should be reading "BIG SMILES", on the anti's, ready for treatment, got my jello and soup, plenty of water, YIPPY KI O !!!
END OF RANT....Bobby, (oldsarge)....PS Hector, Lithium is "filtered through" the kidneys, and at the dose I'll be taking will have little affect on the kidney's, if at all...Please folks, bare with me, Hep c has severly reduced my life down to very little, I truly fit ALL the disabilty requirements, the issue is not the meds, it's not my mental state, it's the docs who worry more about paying their mortgage than treating their patients. As I sarcasticly said yesterday, I could easily go to the doc and report my symptoms, deny Hep-c treatment, and get a script for an ssri's and some Oxycodone as their motto now seems to be "Keep em smiling and on the reservation", rather than "do no harm"
The issue for me is that I NEED to trust my docs. The primary care had the information Aug 2nd, and didn't relay it me. If she is sitting on a lab result and doesn't get back to me while I'm being treated, only God knows where and what specialist I'll end up with, who may want to take me off the hep tx or treat me for something else.. As for getting a new primary? 4 month waiting list. I can understand her issues, however I'm being prescribed the Lithium at a dose that may not even show up in a lab as "theraputic level". It's just there to stabalize my mood not treat a bi polar condition.
I had mentioned in an earlier post about my buddy who died after a liver transplant. His numbers went wacky, and his spot on the transplant list was high, then 4 months after the wacky labs, he developed tumors/cancer, and our doc got him switched from the hep transplant list to the cancer transplant list. Good move, however the new liver was no match for the hep c, and he was back on the "combo" in 3 months. I'm getting labs monitored every 45 days. You'd think the primary care could be just a bit ethical, and not put me in a holding pattern. If I don't call the the GI doc and tell them I don't have the stabalizers, the meds will be at my door in 3 weeks, then it's up to the meds to do their work. As close as I'm ready for this, which took a hell of a lot of thought and advice from others, the system, with all my records and consults, has not changed a bit in 10 years.
I'm sorry to "dump" like this, but on the other hand, I'm not sorry about voicing about how I'm being treated...When a doc "misses" the report, doesn't call the patient and worry's more about following office protocol than treating the patient, some thing is extremely wrong.
My posts should be reading "BIG SMILES", on the anti's, ready for treatment, got my jello and soup, plenty of water, YIPPY KI O !!!
END OF RANT....Bobby, (oldsarge)....PS Hector, Lithium is "filtered through" the kidneys, and at the dose I'll be taking will have little affect on the kidney's, if at all...Please folks, bare with me, Hep c has severly reduced my life down to very little, I truly fit ALL the disabilty requirements, the issue is not the meds, it's not my mental state, it's the docs who worry more about paying their mortgage than treating their patients. As I sarcasticly said yesterday, I could easily go to the doc and report my symptoms, deny Hep-c treatment, and get a script for an ssri's and some Oxycodone as their motto now seems to be "Keep em smiling and on the reservation", rather than "do no harm"
I know it really is stressfull trying to get all your ducks in a row so you can start tx and you have to still deal with all of that through till you're done some times. I am! Just stay strong and keep moving forward everything will work out in time. Go in to this with the mind set that it may take a long time to get everything you need to get started. Good luck and I'll keep you in my prayers. We can all use all we can get!
You almost have to mentally resign yourself to Rx troubles. Like nygirl i had to jump through hoops. Still jumping!
Hector is right: evaluate ur whole mental n physical health and get ready. I hope you'll get a psych eval and be able to proceed.. Good luck. Karen :)
Hector is right: evaluate ur whole mental n physical health and get ready. I hope you'll get a psych eval and be able to proceed.. Good luck. Karen :)
You wrote "psorosis" but I think you meant cirrhosis, right? Or did you mean psoriasis? These medical terms are hard to spell!
Hector, I'm thinking oldsarge is moving towards tx because he has cirrhosis. I hope oldsarge will correct me if I'm wrong about this.
Hector, I'm thinking oldsarge is moving towards tx because he has cirrhosis. I hope oldsarge will correct me if I'm wrong about this.
Try not to panic. Treatment is not easy. It is not unusual to have some bumps in the road while waiting to start treatment. From what you say you are not ready to start treatment at this time anyway.
Are you bipolar? Is it only when on treatment that you have had a manic episode? If you are bipolar you should be on meds all the time to help to smooth out your mood swings. Doing treatment and having a history of depression or bipolar illness that is not being managed is a bad if not dangerous idea. You must have your ducks in a row before starting treatment. You are jumping the gun here. (sorry about mixed metaphors).
By the way SSRIs are anti-depressants and it has been reported that they can cause manic episodes in some patients. Lithium or Depakote are mood stabilizers and are usually combined with other types of drugs.
Celexa is an anti-depressant. Anti-depressants are not going to stop you from having a manic episode. They stop a person from having a depressive episode. So why would you even think of taking an anti-depressant?
Psorosis and lithium don't mix. Lithium aggravates psoriasis in about half of those with psoriasis who take it. So what is the psychopharm consultant thinking?
As nygirl said there is no rush to start treatment. You want to be able to complete treatment otherwise you are wasting your time and could develop resistance to PIs. Not a good idea. Besides it takes up to 8 weeks for Zoloft to become effective. So you need to wait anyways. You should see a psychiatrist to make sure you get the correct meds and be monitored. Sometimes you have to try different meds to find one that works for you. Surely there is more than one in network.
Spend your time preparing for treatment. This will increase your odds of SVR.
Hector
Are you bipolar? Is it only when on treatment that you have had a manic episode? If you are bipolar you should be on meds all the time to help to smooth out your mood swings. Doing treatment and having a history of depression or bipolar illness that is not being managed is a bad if not dangerous idea. You must have your ducks in a row before starting treatment. You are jumping the gun here. (sorry about mixed metaphors).
By the way SSRIs are anti-depressants and it has been reported that they can cause manic episodes in some patients. Lithium or Depakote are mood stabilizers and are usually combined with other types of drugs.
Celexa is an anti-depressant. Anti-depressants are not going to stop you from having a manic episode. They stop a person from having a depressive episode. So why would you even think of taking an anti-depressant?
Psorosis and lithium don't mix. Lithium aggravates psoriasis in about half of those with psoriasis who take it. So what is the psychopharm consultant thinking?
As nygirl said there is no rush to start treatment. You want to be able to complete treatment otherwise you are wasting your time and could develop resistance to PIs. Not a good idea. Besides it takes up to 8 weeks for Zoloft to become effective. So you need to wait anyways. You should see a psychiatrist to make sure you get the correct meds and be monitored. Sometimes you have to try different meds to find one that works for you. Surely there is more than one in network.
Spend your time preparing for treatment. This will increase your odds of SVR.
Hector
Did you take the SSRI last time when you went manic? I can kind of understand it being outside of a primary docs comfort zone. Primary care docs dont really know that much about treatment or hep let alone pyschiatric things.........I know how frustrating it is for you but I think it was probably wise that they aren't take a chance on your life by just doing things helter skelter.
Is there a reason you have to treat immediately? I think way back when I treated it took me a few months to get started because my doc forgot I needed the opthamologist appt and that held me up a month....I was stage 3 and wanted to start right away but everyone was right it really didn't matter that I had to wait a few months - the 72 weeks took forever and it seemed like I was on treamtent for years.
Is there a reason you have to treat immediately? I think way back when I treated it took me a few months to get started because my doc forgot I needed the opthamologist appt and that held me up a month....I was stage 3 and wanted to start right away but everyone was right it really didn't matter that I had to wait a few months - the 72 weeks took forever and it seemed like I was on treamtent for years.
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If the Lithium is what you know works best for you, then maybe it's worth waiting a couple of months to see the psych and get the Rx. You've done so much already to get this show on the road, maybe you can wait just a little longer and make it go the way you want, the way that works for you.
I don't know anything about Lithium and tx, but I did look it up on both the Incivek and Victrelis websites and there is nothing there about avoiding Lithium with either of these new drugs.
Here are the links, medication interactions are on page 2 for both:
http://pi.vrtx.com/files/usmedguide_telaprevir.pdf
http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_mg.pdf
So anyway I hope you hang in there and get what you need. Keep coming back here to get some support, and maybe we can help you through this. Best to you,
Lapis