Post TX Follow-up and Lack Thereof--Thoughts

[GreatBird]

I'm almost done with my 48 week boceprevir trial. I have about three days of pills left and I'm contemplating my recovery phase. I know as soon as the anemia begins to resolve, I'd like to get more physically active--especially some light cardio and long walks. Anything to get my blood pumping and lymph moving would be excellent. Plus, it's good for my mind to get out more.

One of the things I'm wondering is how many people get checked out by an endocrinologist after completing tx? As I read posts I notice things like R Glass and his very low testosterone level that wouldn't have been checked if he hadn't asked. I know thyroid can be a problem both during and post tx. An endocrinologist looks at these things--including blood sugar (pancreas) and other hormones to see how the body is working on a glandular level. It just makes sense to me that having all the precious bodily fluids* checked should be SOP for the year following treatment. Endos even keep an eye on vit D levels.

I'm fortunate to have an excellent endo and plan to do follow ups--perhaps more frequently--during this recovery period because, although I'm on a study and they won't be leaving me high and dry--this isn't their forte. Their forte is getting the treatment data in to the sponsor and taking care of the patient during that process.

The other problem with having the follow up by a hepatologist is that the problems people talk about post tx (fatigue, brain fog, achy joints, thyroid, etc.) are not liver problems. They are specialized problems that result from an onslaught of medication that affects our chemical balance for the period of time we're taking it.

I also wonder if endos are qualified to help get patients off ADs and anti-anxiety meds since one of the problems with that is how they can wack out serotonin levels, especially when stopped too quickly.

Now some people don't seem to have much of a transitional phase. It's like their body slowly goes back into balance on their own. But this is not true for many.

So I was wondering during my sleepless hours I'm wondering if I'm alone in my thinking that this would be a good idea to do routinely at the end of our 24/48/72 week journeys.

- - - - -
*sorry, it's the middle of the night and I couldn't help myself

[WriteItDown]

Is today your last day, Great Bird?

I hope so!  Congratulations!

[nygirl7]

Be careful GSD I know someone who claims they gainned a lot of weight from neurontin.

My vit D is in the low end of normal too - seems to be very common (which is I guess why the test us for it probably).  I was kind of shocked cause of all the milk I drink I thought it would be skyhigh......guess I'd better start asking for the drops too.

God even after how many five six years I'm STILL learning stuff on here! Amazing!

[newleaf09]

My mom takes neurontin for burning feet.  It's also used for restless leg syndrome and peripheral neuropathy.  She's 87 and takes 7 a day so should not hurt you, only help.

I was at clinic yesterday and took them my bone scan results.  They are arranging a consult with an endocrinologist.  I can think of lots of endo-related causes for bone loss: malfunctioning parathyroid would stop the process of rebuilding bone, low estrogen (hello interferon) causes bone loss.  There are more thyroid tests than the typical TSH levels looked at on TX.  Maybe I'll learn something.

[GSDgirl]

I just posted my cholesterol on another thread, think it is the weight thread.  I am 20 months post TX and the cholesterol is high.  Thyroid is fine thank goodness.  RA factor is negative also.  The Endo diagnosed Fibromyalgia using pressure point pain.  Going by my past history and bloodwork along with the pressure point pain is how he made the diagnosis.  

I am trying the neurotin which has been around a long time instead of Lyrica.  I just hope it helps.

Denise

[lalapple]

if you're having thyroid problems, definitely keep in close touch with endocrinologist

[newleaf09]

My cholesterol never raised much, seems to be back to my regular low pre-TX levels.  A good thing, since I'm a big butter and cream cook.  There is a lot more to vitamin D than meets the eye.  I am in the low part of normal, too.  Low vitamin D could mean liver was too damaged to convert it to a useable form, could mean parathyroid (little glands within the thyroid) isn't working right.  It just seems to get more complicated by the second.  My hope is that we will all be reporting a return to normal function when we are 12 mos. past EOT.  Not so sure expecting normalization at 6 mos. is realistic.  I seriously doubt if even the most qualified experts have a handle on the effects of immunotherapy.

[GreatBird]

My vit D is in range but it's quite low. My endo feels the range is off and that's why she prescribes it for me. She's watching to make sure it doesn't get too high. (Not a chance so far.) It does make the achies go away, so I know it's working.

PCPs aren't up on all this like (good) endos are.  

[nygirl7]

My cholesterol was high during tx but 4 weeks post HDL, LDL,  and total cholesterol had returned to normal.

wow  Tippy that's great most of us have our cholesterols go sky high after treatment - it would seem you got a break! I'm jealous! :)

I think going to an endo for a post tx checkup is a fine idea. Why not. I just go to my PCP now and pickup my script for my synthroid but it's not right - I should be going on occasion to him for sure. The PCP does take my vitamin D test and it's low but not out of the normal range......I should ask about adding some in, learning so much about how important it is lately that you all gave me a good reminder that I should do it too.

[GreatBird]

The tsh rising is a good thing? Does that mean there's a possibility your thyroid will go back to normal? Glad to hear about the cholesterol being back to normal. I am hoping mine will be too.

[Tippyclubb]

Thyroid is still whacked out but tsh is slowly rising.  My cholesterol was high during tx but 4 weeks post HDL, LDL,  and total cholesterol had returned to normal.  Hopefully yours will do the same.

[GreatBird]

Thanks, all, for responding to my midnight ramblings. :)

Marcia--I was prescribed vit D by my endo, although I haven't been good at keeping it up during tx. I'm making a renewed effort to get my dose in every day and maybe that will help keep the aches away.

Newleaf, good luck on your 24 wk post visit. I'm sure it will result in UND. I hope they can get to the bottom of your joint aches.

Annie, I'm glad to hear the sx are clearing for you. Hope you can get the sleep part solved. I don't know how people manage without enough sleep. If anything, I've been getting extra sleep while on tx. I have a hard time staying up past 8:30 which makes it challenging to take my pills at 11:30. That's why I was up in the middle of the night to write this in the first place because when I woke up to take the pills I'd already had several hours sleep which made it harder to go back to sleep.

Isobella--that's really good to hear about the ear-ringing. I haven't even complained to my trial nurse about that (I keep forgetting). That's partly because I had tinnitus before the trial, but it has gotten louder. I wouldn't mind it going back to a dull roar. Really.

Denise, you can babble at me anytime. I'm hoping the vit D helps with your fibro aches. My endo has me on a liquid--two drops give me 2000 IU. It's D3 (whatever that is). And it is in addition to whatever other D I'm getting in my diet and supps. She checks my levels every six months to make sure they don't get too high. So far they still are on the lower side of the range.

Thank you writeitdown!

Tippy--it's good to see you. :) I can't *wait* for the anemia to lift. It's been really a challenge since we moved at the end of October and I've been unpacking and all that bending makes me breathless. How is your thyroid doing? Mine seems to be still hanging in there . . . now if my cholesterol levels would go back to where they were before that would be good.

[Tippyclubb]

First of all I am so happy to read your almost done! You should feel much better in two weeks, and a month later you will feel great, hopefully.  Takes it easy for a few months and when your body is tired, listen to it and rest.  I was so excited when the anemia lifted and over exerted myself a few times and ended up feeling like **** for a few days after.  

Yes, definitely go to a endocrinologist as your right about the trials not doing detailed complete blood work post tx.  

My wish for you is a speedy recovery with No post issues!

[WriteItDown]

Just wanted to say YAY -- only three more days!!!

[GSDgirl]

GB, I  have been to so many doctors since EOT (was a year in March) RA factor was normal, x-rays of neck, hands, knees, pelvis normal,  had so many blood tests I can't even remember them all,  have muscle & joint pain.  Went to a pain clinic, opted out of the cervical epidural as my neck has problems in 4 discs so it is not a surgical fix.  Rheumatoligist ruled out other RA blood tests and diagnosed Fibromaylgia.  He suggested water aerobics, I asked if I coulod possibly do them in a hot tub LOL.

Next doctor visit is the gyno and I am gonna ask for hormone levels to be checked and vit D levels.  I take vit D supps anyway.  Also just had high cholesterol levels, time for a recheck----minus the shrimp & lobster.

I just reread your post and didn't answer one lousy thing you asked, sorry.  Just babbeling I guess.

Denise

[Isobella]

I'm hoping you're gonna be pleasantly surprised at how quick you start to feel better.  That's how it was for me.  I did stop the Zoloft and Atarax on my own, probably too soon.  Ended up at the derma with a rash and itchies that were slightly worse than when I was on tx and taking the Atarax.  My pc told me to re-start the a/d, but I didn't want to.

I found that the majority of my problems post tx were caused from doing too much too soon.  It was like all my ligaments and tendons were too tight from being inactive for 48 weeks.  Massages, heating pads and light stretching helped.  

Ear ringing from tx was gone pretty quickly too.  5 months out and I seem to have started a peri-menapause thing.  

Being in a trial also, they do check all my levels and everything looks great as far as thyroid, glucose, ect.  They don't check RA factor....and that is my one complaint...the joint pain in my hands is back worse than before.  But I'm so sick of docs that I hesitate to follow up.

Your plan sounds good to me.  I can't wait for you to be done.....counting down.  You're gonna be GREAT bird!!!

Isobella

[annieCinMD]

I am finally starting to think that all of the bad sides are going to go away. I am starting to be hungry again the way I was pre tx, and that one I actually wish would stay away. I got down to a weight I really like and want to stay here! I found out I went through menopause sometime in the last 3 years. I'd like to credit the tx with that one, but I'm not really sure because I had stopped my periods with the pill. And that one was actually a good one, in my opinion. I don't feel any different, just don't need to worry about changing diapers at 50! I'm seeing a sleep specialist next month because my doctor won't continue to prescribe Zolpidem if I don't, but that one is finally clearing up, too. I don't take it every night any more. I was getting worried about my hair, because it's still falling out at 14 weeks post tx, but I think it's slowing down, and it looks like it's growing back at the same time. A lot of little short pieces coming in. The ear ringing has mostly gone, too. I think that one is related to the protease inhibitors. Others have complained about that and they were all on PIs. I'd definitely give it time before claiming something is permanent. They say not to try to get pregnant for 6 months, should one want to do that and still be able to, for a reason. Tells me the stuff stays in your system for 6 months.

[newleaf09]

I am 6 mos. post TX (going for the 24 wk post checkup in 2 days).  Have a few symptoms still hanging in there.  Some, I think, are related to the trial drug and I think I have a little leftover IFN effect, too.  Lately joints are bothering me.  Getting harder to ignore these things and continue telling myself "These are just post effects, they come, they go".  After all it's been 6 mos. now.  

I am really thinking that just as we all have somewhat unique responses to the drugs while on chemo, it will be just as bizarre during the post TX phase.  I believe that there should be a medical specialty devoted to managing the effects of chemotherapy, both during and after the drug therapy.  Maybe it should be a subspecialty of endocrinology.  I am starting to feel that HCV treament is like trying to kill a mouse with a shotgun.

[Marcia2202]

It sounds like a perfect idea.

I had my hepatologists look at Vit D, thyroid, etc post tx.Fortunately everything went back to normal quite fast, so I didn't need any special follow ups.
Endend up getting off the AD's my way, as the way the doc had suggested didn't work well for me. I was to cut the does in half stay there for a while and then get off it.

When I went from 20 to 10mg of Celexa, I did not feel good at all. It took a few days to adjust. So I decided to break the pills into little pieces of 2,5mg and went down 2,5mg at a time. The last little pieces I even broke into half again. I improvised and listened to my body. This turned out to work really well for me. If I remember correctly it took me about 2 weeks to get off them, without any ill effects, except the first dose reduction.