Hep C Discussion Forum

Canuck · Guru

RE: Lingering Depression

Tig · Admin

Once you have achieved SVR12, which is about 95% of the time, the chance of relapse is <1%. It's quite rare. The stories of genotype 3 relapse and most others, are from the old days. Back when Interferon and Ribavirin were it. The rates of success were dismal and treatment was very difficult. We all relapsed, just about anyway. Some treatments were a year long! Today's options are far better. You'll do well, I'm sure of it.

Enjoy the time with Mom! It's very good for both of you to get outdoors. The air and activity are important. Keep it up and don't forget your water!

Phyllis · Veteran Member

I meant fibrosure. I think she ordered it because of cysts.

Im on trip in mountains. My 89 year old mother wanted to come up. She seems pretty depressed. Thankfully, I'm feeling much better and also I have a sister up here. But I am SO thankful that I can help her

Isure seem to have moch more energy. Wonder if that's from being cleared of the virus. If I am. My gastroenterologist said I Am. But haven't people had recurrences with genotype 3?

Canuck · Guru

Hi Phyllis,

I've never heard of a fibro "lite" test. There are many tests they can they "follow" us with after cure, often the very same ones they made use of prior to treatment and during tretament. More commonly, I see names of tests more like "fibrosure/fibrotest" (and there are many more similar that help assess where your liver funtion is at) - fibro"lite" is not a name I am familiar with. But, regardless, I just assume your alpha2macro is part of this "fibro"lite" test, or that you had an "abbreviated" panel of LFT's that is being called fibro"lite".

Good, as you report, that all the rest of your lab values are normal. (Depending on what all tests they did, ALT/AST etc) - we can only assume things look good, OK and are improving. I wonder what your alpha2macro was before??

What were all the blood tests they took this time, and do you have any prior comparions to go through, so you can compare "before and afters"?.

There isn't a ton of info in your sig line to go by (as far a labs, U/Ss, fibro"scan" tests, biopsies, ALTs/ASTs/Fscores), we would have to scroll through past posts to look for/glean out info to compare against, I can never recall these details over time. But it would be interesting to do so!

But, as you say, other than the alpha2macro - the rest looks good eh, and that sounds good to me! smile Have you had an opportunity to ask you doc about your alpha2m? He'll be the best one to explain it.

When is your trip coming up again? I hope you are looking forward to having a good time, walking and visting, like you described, seeing new places/things!. smile C.

Phyllis · Veteran Member

Hi there. I just got results from fibrolite test. The only thing off was the Alfa 2-macroglublins. The were about 450. any ideas what this means?

Phyllis · Veteran Member

im afraid i have to go. I will start thinking about the good things. Great walking and hiking. I will have a sister there in another house. My mother is counting on me to take her.

p

Canuck · Guru

Hey Phyllis,

Glad to hear he ordered you that fibrosure test. Yes, it is one of the ways they can figure out Fscores, or, help to keep tracking your current levels of liver health, fibrosis/cirrhosis - the "fibrosure" test uses some of the other reguar blood parameters you are already familiar with (like ALT/GGT, etc.), some of these you were already having done before and during treatment, but for the "fibrosure" test itself they combine quite a few of these blood tests together to make up the "fibrosure" test. The fibrosure is just one test of many tests that they SHOULD be doing for you, all along, after you have been cured of your HCV. It is quite possible you have had fibrosures (or other such similar fibrosis tests) before and just have not been aware of them or the results. I forget what you have told me before, about known Fscores for you. You should add them and the dates, and info like that (pre and post-treatment test results), to your sig. line

Follow-up after cure is good, and important. For GT3's they should be following us well (all GT's really), but for us 3's they also need to keep tabs on any fatty livers we may have had, and if we were ever fatty to see that we have resolved things like that. Aside from liver function tests (LFT's), ultrasounds (for one) should be offerred to us, lipid panels are also good to be followed with. I forget right now, what all follow-up you said they planned for you on a regular basis., ie ultrasounds etc.

Do you HAVE to go on this "out-of-town" thing?? You sound "pre-primed" (to me) to expect a bad reaction, if so, (if you're anticipating a reaction) you might very well fulfill your fear. Maybe, if you can find ways to resolve your fears/predictions a bit, by figuring you might just win by gambling with this risk, then you should try to go and just fight for all the control you can muster, and see what you can make happen. Logically, chances are you will be OK, just as much as having it turn out not to be OK. If you weigh your fears and confidence levels and cannot convince yourself to go, without fear and reservation, then perhaps don't go, you will risk self-fufilling prophecy. But look at all you have mustered strength for so far, huge events you have and are overcoming! - I'm betting you probably can do it just fine, and feel better for it after. But if you decide not to go, that is perfectly acceptable too and a tried and true method that will work to completely bypass any risk you feel.

Weigh the consequences - melt down?, no one wants one - but you will survive it to try, try again. No melt down, hm, imagine what the future holds!! biggrin C.

Later, I'm on a quest, out of town for a test, back maybe late tommorrw night.

Phyllis · Veteran Member

I meant to say a change in meds

Phyllis · Veteran Member

Hello Canuck!

it sounds like you walk about the same amount I do. Today I hope to get Right now I'm at 5843.

Well my gastro told me to not worry about cysts. Also ordered a fibrosure test. To look for chirosis?

I feel like I need to boost the gaba today. I called the docs office and his assistant will check with him. But sometimes I wonder if I turn to a change in mess or give it a little longer and symptoms will go away.

Im a little nervous because I will be leaving town to go up to cooler country! But it makes me a little nervous. I had a real bad melt down when I was there a couple of years ago. But I was about 6 weeks off treatment and I was something of a basket case.

Best regards!

Phyllis

Canuck · Guru

Hi Phyllis,

Man, that does sound like your toe must be well healed up now and better - if you are walking 10,0000 steps per day!! Holy cow, what did you walk before your toe job! That must be like 4 or 5 miles a day!? Lucky if I can get in 3 miles a day, a few days per week, if I really make a concerted effort to get out there! I do like to walk too though, good for the body and soul, love nature and photography, so it suits me. Time consuming though. We do try (really) to get in a walk (almost every day) average (I guess) about 4 to 5 walks per week and "about" 3 miles per day (give or take). Lots of "stuff" always seems to come up to stop us walking more, but I do think it is very good for us.

Yes, I am a little bit familiar with gaba, know others who have taken it for various reasons, and, often in combo with other drugs. Interesting they chose it for you, well worth a try, and they (and you) should be the best judges of what is best to try for you - but REALLY nice you HAVE been feeling some better - THAT IS the main thing!!

Ah, that makes more sense now, you are probably right (about them just happpening to notice the cyst, when you had you chest CAT), so, always good to have the ultrsound as well, the more imaging, the more info, the better I say. Except, that sometimes imaging just reveals minor things that still cause us to sweat them! Those docs will just go through their "due diligence" and follow you well. Likely this thingy will sit there "available for photo ops" and/or just vanish, just like a movie star in the limelight!

Interesting, your journey with the nutritionist! What kind of diet? C.

Phyllis · Veteran Member

So happy to hear from yoU. Well first of all my toe is much better! I track my stops and for the last three I've walked about 10,000 steps each day. I'm thankful for that!

it's funny about my doctor in that I've seen her very few times. she was watching my blood tests. Never a CT scan. My primary care doc ordered the CT scan on my lungs and I suppose that is how they saw cysts. So tomorrow I have ultrasound on liver and then coincidentally I see my gastroenterologist.

Well I am still on Paxil (40 mg) and eff and clonopin. he has added gabapentin. That is generic name. If you look it up It says that it is for diabetic foot pain and seizures. But they have started using it for major depression. It is working well. Now on 300 mg 3xday. Fortunately no weird side effects. I don't know how long I'll have to take all these meds but I'm grateful that I am feeling emotionally and mentally much more stable. The nutritionist had given me an eating plan. It has been good. He didn't do the neurotransmitter response testing. then put me on the eating plan. Said I wasn't in good shape then. So I don't know about this testing. The info says ," the NRT testing is a synthesis of western healing and incorporation of 26 other healing systems including Chinese and Ayurvedic healing principles". It does sound interesting.

So very good to hear from you!

PHyllis

wendyo · Guru

You made my day Phyllis. I am relieved and happy for you about the new medication helping AND being undetected. Big hug!

Canuck · Guru

Hey hiya Phylis!

Been wondering how you've been since we spoke last.

That is lovely news to have, still undetected! biggrin WOW, these May bloods makes it 2 years SVR for you! Well, just goes to show you that that 24 weeks of sofa/riba sure works to cure GT3's.

How is your post-op foot doing now? Are you able to do some of your walking routine?

Lots of people sport harmless cysts, many people just never get to know they have any, because they have no reason to ever have any pictures taken! Follow-up (for us cured HCV'ers) provides us imaging opportunity to know we have some. Cysts are notoriously innocuous things. My partner had a CAT of his chest, and they just happened to find a rather huge cyst he probably has owned for a very long time in one of his kidneys, almost as big as his kidney itself! No one is in the least concerned about it. But good to know when we have extra things (I think).

So, what has your post-treatment follow-up consisted of, have you been getting ultrasounds every 6 months since EOT, or what have they been doing for you and how frequently? No CAT's at all?

So, last we talked, you and your doc had slowly been reducing your effexor down to be a low dose, and with the eff you were also on paxil regular, and then just supplementing with clonozapam as necessary. I remember you were thinking it would be good to try to be just on paxil alone (I think like you once were long ago), so, what drug(s) did you two decide to try now - no more eff, just something else to add to the pax and clonoz? Regardless, I am very glad you are feeling better with the change.

Did the nutritianist come up with any intersting advice for you?

I'm glad you checked in again with your good news and updates. biggrin C.

Tig · Admin

That's fantastic news all around! Congratulations on your continued undetected test results. You should plan on it staying that way. Liver cysts are fairly common and generally asymptomatic. They show up on ultrasound frequently and don't present a problem. The doctors will confirm that.

Phyllis · Veteran Member

Well some good news! The psychiatrist Prescribed a med that has helped a lot. And my primary doctor says the lab reports show that I am clear of virus. i am thankful for that.

Thry have recently seen cysts on my liver. I go for ultrasound on Friday.

wendyo · Guru

I'm sorry you all did not make it to the beach but here's hoping you will soon. I have never had the effexor adjusted, have always been on low dose and as I do not have anxiety cannot speak to that part. I was put on it for depression and menopause symptoms.

I am sure the nutritionist and doc will help you today. Sending warm wishes and

Phyllis · Veteran Member

Hi Wendy,

i didn't get to go shelling. My husband was not well. I'm still ready for a beach trip but don't know if I'll get one!

Did it take a with you on coming down on the Eff. I have come down without much problem from 300 mg and now to 75. I seem kind of stuck.

Does it see to take a long time foe people to finally get over the anxiety? i know a lot of people get to feeling better soon after EOT.

see my doc tomorrow about meds and I'm going to see a nutritionist Also.

Thanks.

Phyllis

wendyo · Guru

Hi Phyllis - as you know it is trial and error trying to get the meds right. And I am sure your doc will adjust accordingly. Did you make it to Sanibel and go shelling?

Phyllis · Veteran Member

Thanks, Tig. I'm working on it!

Tig · Admin

Hi Phyllis,

I hope you get some answers on Wednesday. When the doctors finally get you on a even keel and the highs n' lows settle down life is going to be good! Combine that with the demise of your Dragon and things will be much improved. I believe the virus can cause many maladies similar to those you're experiencing. Lets hope you witness dramatic improvements and these current issues just go away! We can keep our fingers crossed.

Stay positive and encouraged!

Phyllis · Veteran Member

Hello Jimmy,

thank you for your prayers! Yes I will see my doctor on Wednesday and see what he wants to do.

Phyllis

JimmyK · Guru

Hi Phyllis, I am very sorry to hear your troubles. We here of course cannot advise medically in such matters other than to affirm that seeking qualified Medical assistance is certainly the best path forward.

What I can do however, and have, is pray for your peace. wink

JimmyK

Phyllis · Veteran Member

Hello everyone!

I reduced Effexor to 75mg per day. I think it was about 2 weeks ago. At first I was fine. Now I'm in a not so good place with the anxiety and some of the depression. its just those gut level sadness feelings for no reason. I called my doc on Friday and he didn't want me to redce it just yet. but I'm so tense, clinching my teeth, dont know what to do next, or rather hard time with decisions. And the clonozapam doesn't seem to zap those feelings like they did.

I hate to say it but yesterday all day kind of tough. Then i took a different pill to try to get rid of the continuous anxiety (I used up my daily clonozapam). and it helped so much.

i have to do something about this anxiety. Maybe I can tolerate the eff with a different anti-anxiety med.

thanks all

peace

Phyllis · Veteran Member

Thank you all for asking about me and baby toe!

I thought it a long time for sutures also. And still can't get wet! There are about 9 sutures below toe nail. Then about 3 more where they removed a big callus. I always thought that was an extra toenail beside my little one. blankstare I am still wearing this "boot". I do hope I can get rid of that! I did get a glimpse of bone when I took a peek during the surgery. I think the bone spurs made it more of a big deal than I expected.

Im supposed to go to Sanibel Fla this weekend. They are supposed to have a great beach for shelling. I hope I get the "all clear" from doctor.

wendyo · Guru

So glad to hear you are feeling better Phyllis and the stitches will be out this week. Progress

Canuck · Guru

Hi Phyllis,

So your surg was March 7/8, and this coming Weds. makes it about (aprox.) 21 days that the stitches have been in? It seems (to me) like a long time for sutures to stay in, but, they are the bosses and know best what they just sewed up, and how much suturing was needed inside and out, and for how long the external sutures should stay, in a "dependent" wgt bearing area. Maybe that is their "standard" better safe than sorry timeline, but surely they will take them out now Wed., if the suture line has stayed intact, looks good and all appears to be healing well.

Things (all round) are looking up and hopeful eh! Spring is not far around the corner. smile C.

Phyllis · Veteran Member

Hello there! I do think it's the Effexor. And my doc seems to think so also. I hope we will continue to decrease.

my toe is still sutured. I hope he takes stitches out on Wednesday when I see him. I only took pain medo for 3 days. i didn't have constipation. Maybe my probiotic helped with that. The pain meds they gave me started to make me feel emotionally bad.

I feel that I'm on the mend with my foot and emotions,etc. I am thankful for good days!

Tig · Admin

Outstanding!! Smiles all around... smile

Canuck · Guru

Well, that's very good news Phyllis! I hope this reduction in ef is proving to be just what you need! Seems probable, plausible, likely (to me), but I am just guessing, doesn't it seem that way to you? What are you thinking?

Hey, tell us how you are managing with that foot and everything. Don't be shy! Were you able to prevent it swelling much? How much of the analgesic did you end up having to take to get through the post-op period, how has the wound and foot been feeling since the sutures came out, and where are you at with weight bearing and activity. Did you end up battling any constipation from your analgesia and lack of activity?

I am glad you keep us posted and that you are feeling pretty good! Maybe it will be, now, ever-increasing incremental improvements to the good! smile C.

Phyllis · Veteran Member

Hello! Just wanted to tell you doc decreased eff another 37.5 mg. Seems to be a good thing. Feeling pretty good.

Thank you. And peace.

Phyllis

Phyllis · Veteran Member

A sentence disappeared. I meant to say my psychiatrist will be back from vacation and then I can get decrease in eff.

Phyllis · Veteran Member

thanks Tig and so good to read your response. im drinking water hoping to flush it out.

i hope when he comes back I'll be "back" To myself and maybe he will decrease the eff 37.5 mg.

Thank heaven for all of you and this Hep C forum. It is so good to connect with people who know what it can be like.

phyllis

Tig · Admin

Hi Phyllis,

Sorry for the bit of a setback, but you're right, it'll be back to normal in a few days. The opioids are short lasting and you'll be clear of their hangover relatively quickly. Those of us with prolonged use of them, one way or another, we understand the impact, good and bad that they can have on our mind and metabolism.

Glad to hear the toe is healing as expected and the bandages are coming off. I have a good friend that had a small growth on her big toe that was originally diagnosed as a wart or mole, the doctor wasn't quite sure and then broke protocol by just removing it and not sending it in for pathology. Long story short, it was melanoma and they had to amputate about a third of her foot from the big toe back. Thankfully it hadn't spread and they removed a lymph node or two to be sure. All was clear. She has been hobbling around in a boot and one of those little scooters that you put your knee on and coast using the other leg! I guess she has already knocked over a couple of tables and the dog's tail more than once! I think you two would have quite a bit to talk about!

Keep your spirits up, okay? It'll improve and you have to tell yourself that this was just a minor bump in the big picture.

Phyllis · Veteran Member

Hi there. hmm

well I had surgery on toe. it was very deep, to the bone but I get bandage off tomorrow. Yes!

i was doing real well mentally/emotionally before this surgery. I took the hydocodone Tuesday night, Wednesday and 1 on Thursday.

And now I'm back fighting this anxiety and depression. I hope if it was just 3 days taking that maybe it will be out of my system soon.

I dont like being like this at all.

Anyway, thanks for being there.

Phyllis

Phyllis · Veteran Member

Hi Canuck!

i didn't expect to be so immobilized. I will miss walking but hopefully I can do some yoga In a few days. That seems to be very helpful when I do that.

By staying In bed with pillows elevated it's not throbbing like it was.

I worry about the hydracodone messing with my head but hopefully that won't happen.

Thank you.

Canuck · Guru

Hi Phyllis,

Tig's quite right about elevation (about everything actually!)- about (PREVENTING) as much swelling as possible.

People often do not realize the best form of elevation is in keeping the affected part ABOVE the level of your heart!! That's right, you have to keep it VERY high. Reclined, lying ... leg up on pillows time!

You will be missing your walks, so adopt some sitting or lying isometric exercises that you can do (later on) while still keeping the affected limb high - you can still do some upper body, abs and gluts via isometrics.

Combat constipation due to (even few doses) of narcotics (and due to reduced physical activity) by proactively increasing your water, fiber, fruit intake, try to keep ahead of any constipation.

Do your best, especially important right now, (job #1 at hand) is to keep off the fresh surgical site and elevate as your doc and TIG said to "prevent" swelling. First few days are critical, and first couple weeks are also very important. "Bone work" (never mind tissues) does take many weeks overall to heal. smile C.

Phyllis · Veteran Member

Hi there Tig!

i think there is a real possibility that Effexor isnt the best for me. I think it makes me a little speedy which I do not want! I'll see the doc on the 20th about the meds and hopefully he. Will reduce the dosage!

I aqlsontake Paxil 40 mg per day. I hope that I can just take that. And eventually no more Eff

thanks for your email!

phyllis

Tig · Admin

I'm happy to hear you're feeling better and your toe is repaired and on the mend. Do your best to control both pain and swelling, you'll heal faster. If you don't need the hydrocodone, don't use it, but if you're really hurting, consider it's use. Pain is both physical and mental. Low dose opiods are good at helping control both. Another thing is to keep it elevated while you're sitting. If it's really throbbing, elevate, medicate and ice it briefly. Never leave ice on for extended periods. You don't want the first case of Frostbite in Florida!! You'd be famous!!

My pain management doc wanted me to take Effexor and my Hepatologist said no. He cited some hepatic toxicity issues and because I have enough problems already, we decided against it. If you keep feeling better on lower doses, is there a possibility that you simply don't do well on it at all? I'm glad that you and your doctor are working together to figure out what's best. Good luck and get well soon! smile

Phyllis · Veteran Member

Good morning!

I got through the night okay. Had to get up about 3 times.

I had a bone spur in my little toe and a huge callus moving into the bone. So he took callus out the shaved the bone down. The he made another incision and I think took a little bone out to make the toe shorter. I'm not sure why. so I'm supposed to ice it and he gave me for pain hydracodene. And keep it iced.

I have continued to feel much better still since reducing Effexor. I'm hoping I can come down some more mg soon. If I start feeling the panicy and sadness feelings again I will call. I'm supposed to see him on the 20th.

My toe is painful but I would like to switch to Advil real soon.

Ive been trying to walk regularly but I have to wear this boot for 3 weeks.

Wendy, Palm Harbor and Tarpon Springs is where I grew up.

Thank you for feedback and support

phyllis

wendyo · Guru

Hi Phyllis,

Hope you had a restful night.

Yes I am good with the effexor. (lowest dose possible)

I am in the Tampa Bay area. Lots of us Floridians on here.

Hope today is a good one,

wendy

Canuck · Guru

Hey Phyllis,

So, how is your baby toe - does it hurt much? What did you end up taking for pain?

If you don't mind me asking ... what kind of malady did you have with your toe that needed surgery, what did they do to you! Hope it is well and truly fixed now for all your effort.

I surmize you have been feeling kind of "OK/better/stable" since that last eff dose decrease, that is good!

You gals are lucky, sunny days alone helps EVERYTHING go down. biggrin C.

Phyllis · Veteran Member

Hey Wendy,

Yes I'm out of surgery. My husband is off to CVS to pick up prescriptions. I like your idea of switching to Advil.

Are you good with Effexor? i just decreased dosage and next time I see the doc on 3/20 I'll ask to go down further.

Thanks for you email! I live in Tallahassee

Phyllis

wendyo · Guru

Hi Phyllis,

I am in FL too

By the time you read this, surgery will be over and I hope it went well. If you are in pain, take a pain pill. If you can take advil tomorrow do that. When I had oral surgery 2 years ago, I was able to take 600mg of Advil and not get the pain Rx filled. But everyone has a different pain tolerance.

I was put on the lowest does of Effexor last year due to hormonal issues and no longer being able to take the pill for PMDD.

Let us know how you are feeling.

wendy

Phyllis · Veteran Member

Good morning from here in sunny Florida. Today at noon I am supposed to have surgery on my little toe and I know it sounds minor but I'm anxious about it. Im afraid of pain pills but if it hurts too much I'll need one or two. Then I'll throw the rest away. Maybe it won't hurt that much. I guess more than anything I'm afraid of going back into depression. I needed to talk about this and would like some feedback if possible. ð Phyllis

Phyllis · Veteran Member

Oh what beautiful words! Thank you for sharing your views. I'm ready for a new normal!

i think the riba is evil. I googled but didn't understand. Oh yes it's nice to feel better! And to communicate with others who have gone through a similar experience.

Phyllis

Canuck · Guru

That's good! That you feel a little dif with the last 75 mg eff decrease. Small blessings!

Good job portraying your meds and when here.

I cannot shake my 6th sense on ALL the info you have provided here, that the largest elephant in the room, staring at us, is the culprit riba.

Especially given your history of doing "not too bad" prior to HCV treatment (celexa/or pax), and that you noted the celexa suddenly seemed not to be working so well 2 months into taking riba - that speaks volumes to me, that perhaps cruel riba was well in charge, leaving celexa in the dust so to speak, that "in a normal world" where people do not have to be subjected to riba, that celexa might have kept working "not too bad" for you. Just saying (guessing really.)

I think THAT (riba) was likely the main thing that started throwing you for a loop, riba being the main REAL wrench tossed in, to start to gumming up the works for you. Then, the docs, trying their best try to address the problems, with new meds, more meds, combos and trying to fine tune drugs and dosages to get you feeling better, might have been a noble and justifiable attempt to help you more, but all the while, creating even more new experiences for you.

Given that this is my suspicion (that we can blame the riba for starting most of this grief), then I really do think things are going to improve for you. The best things you could have done for yourself and your health was to kill this virus, the next best thing was when you stopped having to take the riba (IMHO). I think HCV and mostly riba played havoc with you. Now that riba is out of the equation, and you are recouping from having HCV, I think things ARE going to start to improve. I do think you are going to reach a "new" balance, and maybe in the not too distance future, a better than ever new normal!

What do YOU think??

Keep giving whichever one of the docs it is who prescibes the drugs to you, and tinkers the doses, very close feedback, express what you think to him (them), what you are willing to try or do. You can only go with how you are feeling, and your "gut instincts" on this.

You need to keep bumping heads with all of your docs on a freq/reg basis.

Make sure your liver enzymes are getting monitered, and, that you are getting the approprate amount of SVR follow-up required, whether that be U/S's, and fibroscans, as well as bloods.

Ask all your docs, "can the meds I am on, harm my liver?".

Hang in there, I think this roller coaster ride will come to a nice end pretty soon. smile C.

Phyllis · Veteran Member

Also, I am happy to say that decreasing Eff by 75mg has helped.

Phyllis · Veteran Member

I'll try to clarify further. I have to go by years. I started Paxil in 1994 and stayed on that until 2000. Then for some reason I switched to Celexa, an SSRI. Stayed on Celexa until 2 months after I started HCV treatment. At that time since the Celexa obviously wasn't working, I started on Paxil. I can't remember exactly when I started Effexor. And he did gradually increase dosage. at the time he added a little lithium I was thinking a lot about suicide. Supposedly lithium helps with that. It did, but then I just got, as my husband said, like I was getting dementia. when that all hit the fan, dosages decreased slowly off lithium and ramping down to now 150mg Eff daily and still 40mg Paxil daily. And I use the .5 clonozapam 2x daily.

I do hope I can get off the Eff altogether.

I see a gastroenterologist for the HCV but she doesn't seem to want to talk about side effects. I'll see her in May and it's time for another blood test.

Im 64, just about to be on Medicare but I still keep thinking I'm too young for this!

Many thanks!

Phyllis

Canuck · Guru

Thanks for clarifying.

It IS hard to convey a gangly history of drugs and all the changes over time, isn't it!

I still have blanks but, you have made it more holistic.

Timeline-wise, I assume this (late summer) the lithium trial was given all by itself. Then, on to pax and eff after that? So, how long have you been on the pax/eff now? (Perhaps you had already been on the pax first, and when that was not helping you enough, he stopped that and trialed you on lithium instead, and when that did not work for you, he got you back on pax and then added the eff)? And, this 14 year history of being on celexa (just another kind of SSRI?) in the past ... were you still taking celexa throughout the time you were also taking the HCV treatment?

I am in no way familiar with drug therapy(s) for depression/anxiety. I know other people who do get on, or end up being on, both SNRI's (like eff) and SSRI's (like pax) at the same time, and I can only speculate good reasons for why your psychiatrist/psychologist want to try this, just as why they experimented with this trial of lithium. I have to assume they use their best judgment and experience. Drugs are a double edged sword, deserving respect.

Tig brings up this good point and concern about the affects of drugs on the liver, and given your HCV history, we can only assume your docs want to create benefit and to avoid harm.

I have seen blogs, people are taking both eff and pax at the same time, they compare notes, some have the thought ... that because of a person different uptake idiosyncrasies/malfunctioning livers or whatnot, they do not take up the drugs as well and get trialed on or end up take fairly high dosages, while others highlight the concern ... about drugs causing harm to their livers. It is so hard from here to second guess what your docs think. You might well ask EACH of your docs what their individual or group concensus is on the good and/or harm these drugs may do for you. Perhaps the ultimate plan IS to get you back to maintaining on a low dose of something like celexa again (but then that IS just another SSRI, no?) - so, I have no idea what would be best for you in the long run. I guess it is what works, with the least harm that is the most important? Wouldn't it be lovely that along with your cessation of habouring HCV and shaking all the remnants of what riba may contributed to your experience, that things WILL start to improve to the point that you and your docs feel you might feel good enough to reduce some of these meds! The main thing is to get to feeling better, not having to take pills, is secondary.

Being that you are over a year SVR, how many times have you been back to see the hep doc, and have had your bloods drawn for ALT/AST's? Who IS following your liver, your hep doc?, your family doc, or is it mostly your psychiatrist and psychologist?? Or is it a blend of all of the above docs?

And this likely should go without saying, as you and your docs are probably well experienced with these drugs more than I would be ever be, but I did just want to reiterate my little understandings.

When ramping drugs up or down (when on some of the ones you are on), IMO, it should be approached with some caution - it is just safer to do so - to prevent jarring, notable/possibly discernible uncomfortable changes. Some people may not sense any, or much change, even with abrupt dosage changes or even discontinuations, but in my book, unless there is an obvious severe negative adverse reaction to a med, such as those you are on, then generally, just as the entry into using them should be ramped up/graduated, so should the reduction or cessation in the use of them be (this too can prevent a negative reaction). The whole idea of "graduated" is to minimize extreme or abrupt sensations of the effects or side effects of the drugs building or ebbing. Graduated and gentle in either direction is not unwise, unless of course there is some kind of emergency reason to do otherwise. (Just my take on it).

I have to add to this, the other thing I believe (along the same lines of no uncomfortable abrupt stops and starts, increases/decreases with meds), is the importance of adhering to an advantageously evenly "divided" doses per day, if that is what is recommended. I am glad your doc (whichever one it is) is trying to decrease your eff downward now, from 300 to 225 to now 150 mg per day, I expect you were on a divided doses of eff per day before?, no matter how much the total daily dose was?, (as you mentioned, most recently, that you were "feeling" the one eff dose at 150 mg?).

It is true, post-HCV, that your liver status must be followed, especially if you are subsequently on various drug therapies - please make sure your bloods are being done, preferably that you and your liver are being followed by your hep doc, as well as your other docs, and that your hep doc IS acutely aware of the meds you have been on since SVR.

I hope this downward dosing proves good effect, meets a better "sweet spot". You have been through enough already. C.

Phyllis · Veteran Member

Thank you all. It is a relief to be able to communicate With you who know about this stuff.

First I need to look for ALT AST numbers.

I take .5 clonozapam 2 x daily. The last couple of days I have to taken .5 x 3 daily. I tell my doc when I need to do this.

The lithium started around late summer at 300 per day then moved up to 900 per day. I am an accountant and I just couldn't work and focus on anything including numbers. it was bad. So he took me off thank heavens.

i haven't taken Eff today. Usually I have taken 150 mg in am then I start the weird feelings about an hour later. Haven't taken one yet today. But I will. I did take .5 clonozapam.

Im about to go walk now and thanks so much. This is a great help to communicate with you.

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