Hello,

Doc is running out of ideas for the debilitating fatigue I've been experiencing...wants to try low dose ritalin
as stimulant.

Any thoughts?....a pm would be fine....

Best,

Jon

I know of people who have used Ritalin for purposes other than it was intended (like staying awake for exams, etc.) and it seemed to work very well.  I'd say go for it.

Carolyn

It might be worth a try, Jon. While it works well for many who have ADD/ADHD (don't ask me how), it also has the side-effect of being a very powerful amphetamine/stimulant. I'd be careful taking it within 6-8 hours of bedtime.

I too know of people who have used ritalin therapy to combat fatigue.

I too say give it a shot. 

Ritalin is basically the same thing as Methamphetamine, so if you're looking to play with fire, go right ahead.  Scheduled drugs like this are highly controlled for a reason.  I lost my best friend in high school to this kind of casual experimentation.  It is not prescribed for fatigue because it is a highly addictive amphetamine.  Good luck.

Quote:

...this kind of casual experimentation.

Before anybody else climbs up on their high horse without knowing all the facts, Jon is battling lymphoma right now. I have a tendency to withhold my judgment when it comes to using adjunct chemicals to improve the quality of one's life while bigger battles are going on. You might want to consider doing the same.

Point of fact... My friend was battling terminal disease too. He died from complications from the drug abuse. Spare me.

Jon asked for an opinion. My opion is there are significant dangers, especially for people with significant health problems.

I'm typing from my iphone, so forgive my shortness. My friend, Randy, was battling IPF and started using Ritalin under docs orders for fatigue, and then Adderal without docs knowledfe, then straight to crank and meth. It was hard to watch, and it killed him. Sorry for my outburst. 

So let me get this straight...you have a friend whose drug use escalated and eventually killed him, therefore nobody else might derive a benefit from something that might help battle chronic fatigue?

No, you spare ME.

Sorry Brew, it struck a nerve. Am I allowed to have an opinion?  I thought Jon was asking. I was just saying, it has dangers. What was the point of the question, to solicit permission?  Ever watch someone kill themselves with an addiction, especially one that started as a prescription?  I have, and it seemed on topic.

Loopy wrote on Feb 24^th, 2010 at 2:21pm:

Sorry Brew, it struck a nerve. Am I allowed to have an opinion?  I thought Jon was asking. I was just saying, it has dangers. What was the point of the question, to solicit permission?  Ever watch someone kill themselves with an addiction, especially one that started as a prescription?  I have, and it seemed on topic.

Opinion, sure. But you might want to make sure you don't fire from the hip without all the facts. And yes, I have watched somebody do what you describe. It's the difference between use and abuse. Some people actually have this little thing called self-control and USE medications the way they were intended. Don't make the mistake of assuming that anybody using a mood-altering substance is automatically ABusing it.

That's flawed logic, and I'll call you on it every time.

By that same logic, my point is validated. Stimulants are riskier than other drugs. I fail to understand the need to flog me over pointing that out

Have at it Jon. Nothing to beworried about I guess

My kids took it for adhd and had no problem going on or off of it.  I think it makes good sense for you to try it and see if it helps you.  Good luck!

Bill, I love you (honestly I do).  But is this what we have become?  Seriously.

Jon asked a question, and I think I have a legitimate point on the negative side.  I didn't say every person who tries it is going to be killed by addiction.  All I'm saying is stimulants are riskier than your average prescription, and you're attacking me and even sending me somewhat threatening emails... why so much hostility over the fact that I pointed out the very real danger that comes along with stimulants?  For crying out loud, I know not every body is going to instantly become an addict, but I also don't know any addicts who started out knowing this would be their life once they experienced the drug.

Jon, seriously, try it but be aware of the dangers.  Stimulants have a huge affect on your appetite, metabolism, mood, anxiety, and a long list of other things.  If nobody else is going to tell you, I sure am NOT going to feel bad for trying to make you aware.  I'm not telling you what to do, just to BE AWARE.  Big difference.

And with that, I've said the last thing I'm saying on the matter.

It's no wonder I generally keep my mouth shut here anymore.  Maybe I have nothing left of value to offer this board.

Loopy,

Your opinion is valued.  Due to the loss of your friend you have a heightened awareness of the dangers involved, and in typing from your Iphone you were being brief.  That is understood.  It also gave your post a  bit of a stronger flavor than i think you meant it to have when you first posted, based on your later posting.

Jon asked for an opinion, you gave it, Bill having been acquainted with Jon for a long time took it more strongly than was intended.  That stuff happens when we are depending on black squiggles on a phosphor screen and can't see the body language or guage the inflection in a voice.  It is unfortunate, but it happens.  Don't feel unwanted or unneeded because of a misunderstanding between two highly valued people on the board.

Having been put in a situation of being prescribed some quite powerful narcotics when I was first diagnosed with CH and nearly becoming addicted I recognize the danger of medications even when prescribed.  That is the reason I did not answer when I first saw this question.  I have become almost afraid of anything that is addictive and have to think it through before coming to a decision.  Addiction is a terrible thing to watch, and an even more terrible thing to endure and/or try to break out of.

Jerry

Jon, my friend, I really don't know what to say.  I understand your need for energy, and hate to see you going through this trouble.  Because of that I find it very hard to say don't try it, but also knowing the problems amphetamines can bring on I strongly urge caution.

My suggestion would be to lay out a course of action with your Dr ahead of time with limits and safeguards in place to keep you well within the limits that would prevent dependency or addiction.  Kind of like one of the beer company's ad slogan, "Know when to say when".

Praying for you my friend.

Jerry

Loopy - First of all, you implied that Jon's potential use of Ritalin was "casual." You also told him he would be "playing with fire." I call bullshit on both counts. You have taken what happened to a friend of yours - one friend - and implied that there was a strong possibility it would happen to Jon. Again, bullshit.

My email to you (actually a PM) was only threatening in that I said I would escalate (meaning I would turn it over to the moderators) if you continued to harass my friend. Just so everyone here is clear, I will post the exact text of my PM:


Quote:

I understand that some people are addicts. It doesn't mean that all people are addicts. It's not the drug, it's the mindset. Do you even see the distinction? If someone is battling what might be a terminal condition, I give them a pass on using drugs to make their lives better. Would you give your tongue lashing to a person lying in a hospital bed, dying of something dreadfully painful, with weeks, perhaps days, to live, for being strung out on morphine? Of course not. I'm not sure you're aware of where Jon is at or what he's been through the last couple of years. You can lay off him any time now. If you don't, I'm happy to escalate this. 'Nuff said.

I will not stand by idly and allow you to insinuate that I threatened you, thereby giving bystanders the wrong impression.

Jerry, while I appreciate the intent of your intervention, there's really no need for you to defend my actions. I can do that myself.

Good lord. I don't think I could haew been clearer.  I'm thinking maybe YOU had too many stimulants today. Who's on a high horse?

Jon,
I agree with what Jerry said about being extremely careful using Ritalin.  It is a good drug when used *properly* and under a doctor's supervision.   I know you need to keep working, so maybe this will help you stabilize somewhat.

I watched my friend battle non-Hodgkin's lymphoma and saw what she went through, the debilitating tiredness, no appetite, the nausea (not much fun to eat when you're gonna throw it all back up), the weight loss, etc.  I would have done anything in the world to help her.

Loopy wrote on Feb 24^th, 2010 at 6:36pm:

Good lord. I don't think I could haew been clearer.  I'm thinking maybe YOU had too many stimulants today. Who's on a high horse?

I'm on a righteous high horse, pal. You were wrong. Not like a math problem wrong - like a messin' with somebody's soul wrong. Until you admit it and apologize to my friend, I've got nothing more to say to you.

Jon, since it's your doctor who suggested it, perhaps maybe it'd be worth a shot.  I know you'd be careful, I just want you to be happy.  Let us know how you're doing, promise?

love ya brother,
mel

Well, at least Jerry fully understood the meaning and intent of what I was trying to tell Jon. Sorry you want to make it out to be something else, Bill. You're way off base, and frankly I have had enough of this bullshit. Escalate away, flog me on the public square, whatever makes you feel good.

Take care Jon. Sorry this thread turned into this.

last post

I think everyone in this thread made themselves perfectly clear and I know Jon did not want this to become a "shit Storm" but wanted to run this by all of his family here for input. 

If I know Jon like I think I know him..a low-dose of Ritalin prescribed  and monitored by a competant Dr. could be just the thing he is needing right now and in no way will escalate to him taking illegal drugs. 

Linda_Howell wrote on Feb 25^th, 2010 at 11:08am:

...........................................................a low-dose of Ritalin prescribed  and monitored by a competant Dr. could be just the thing he is needing right now .........

Yep.

Marc

It's taken me awhile to post this, for various different reasons.  Dr. Finkel has me on low dose adderall (dextro-amphetamine) - less than one would take for ADD/ADHD, and it has had a huge impact for the better on my situation - both mood wise, and head wise.  It is but one drug in a treatment regimen that we are using to address my situation.

Under a doctor's supervision, especially a competent doc, it can be a very valuable resource.  I can give the entire explanation on how it works with the brain chemicals etc. if anyone is interested, and it's also posted in my original post back in Nov. after I first saw Dr. Finkel.

If you are comfortable with it Jon, do what works for you.

Cat

Thank you all for the replies and opinions....I don't think it is possible to ask THIS family for help and not get it!

To update and expand a little:

The oncologist has been telling me for 6 months that there is nothing he could do for the fatigue. I'm thinking it's because, as he says, this is not a typical symptom for this particular form of lymphoma. Surprising to me from my research (and EXPERIENCE)...but he's the doc.

I believe that my calm and CONSISTENT description of the symptoms, with no requests other than for HELP convinced him. He is the one who suggested low dose Ritalin...PROVIDED my neurologist agreed. She did.... PROVIDED I report any negative effects re ch.

He's now sending me to my PCP for dispensing... PROVIDED she agrees it fits in with my other conditions (going Friday).

SO....the professionals are being extremely cautious...and THAT is not lost on me (tho I am anxious and impatient to try) ....I recognize this is not something to be undertaken "casually"...my eyes are wide open....I just want SOME semblance of normal.

Updates to follow....

Best,

Jon

Jon,

With all you have been through, you are still one of the most reasonable and rational people I know of.

Do what is best for you.  And know we are here for you and love you.

Pegg

And know you'll be in our family's prayers throughout! [smiley=hug.gif]

Joe

Seems a very cautious, conservative, and rational approach to me, Jon.  Hope that it brings about the improvement in the quality of your life that we're all hoping for.

All the best, my friend.

George

Ummmm...this nightmare just keeps getting worse...I keep telling myself.."you got cancer, so what... you'll  get through this...you got friends, family, colleagues, professionals all pulling for you, praying for you...SUPPORTING YOU! I can handle this"....what is so way harder is seeing it happen to friends and family....

Today, I learned from my friend Tim that his Mom, and also my friend, Ilene...a Mom to everyone.... lost her battle with liver cancer last night. In passing the sad news to another friend, I learned that yet another friend, one I considered a cancer survivor, is now under hospice care.....

This damnable disease is relentlessly and mercilessly taking the people I love like dominoes...one after another after another...and I am friggin devastated.

Writing this in tears with raw emotions...probably should have waited...sorry to dump this wail on you...but know that the best thing you can do for a friend sometimes is to just listen...so THANK you..............

jon

Jonboy,
(arms wrapped around you, shoulder available)
NO! This is exactly when you SHOULD post!
It is soo hard to know more who sufffer, or have lost the war with Cancer, BUT, you have to remember, each life has it's time. I can only imagine the fear mounting when you hear of yet another loss to this horrendous disease, but......ahh, you've got this big group of friends here who are doing all they can to keep you safe!!
Vent, rail, swear, whatever it takes to keep you sane through this....and please remember, miracles DO happen....we've seen them here time and time again!

YOU WILL NEVER BE ALONE IN THIS FIGHT, JON!
Please, for once in your life, live selfishly. Keep your focus on YOUR health and well-being, please.

Never far away......

Cathi ::)

ETA: I have been through some pretty rough times of late, nothing I can't handle, but, more to the point, I have one dear friend I share all my angst with, and as we get together, and I tell her where I am and what I am feeling, she gets quiet, and at just the right moment, she will ask "do I have to pull my pants down?".....it's her way of trying to cheer me up..soo, recently, as I was 'cryin' in my beer', in a restaurant, she simply stood up, turned around and began to moon me! :o Needless to say, by the time I got her to quit, we were BOTH laughing soo hard tears were streaming down our cheeks( NOT THOSE CHEEKS>THE OTHER ONES!)..... She's a special friend, Jon, she'll let me vent all I need, but she will never let me give up without a fight.

I hope you understand what I am trying to convey...I guess that is my version of The Serenity Prayer....I can't change things, all I can do is continue to keep my focus on the good stuff in life. The rest is in hands much larger than mine.....I hope He keeps you safe for a very long time.

Anywhooo, you're loved, Jonboy....

Boy Jon when it rains sometimes it's a damned deluge. Keeping the prayers headed your way.

Joe

Quote:

...probably should have waited...sorry to dump this wail on you...but know that the best thing you can do for a friend sometimes is to just listen...so THANK you..............

I'm glad you did Jon.  You may not have met any one of us in person but we know you and you know us.  We are a family,  short of some genes.  ;)

Most of us have followed your story and we feel like we are a part of it and if you hurt...we hurt.  When you get upbeat about something we are all the more happy because of it.  I am so very sorry about your friends but don't stop talking about them to us.  If you can...please tell us about Ilene.  What she meant to you and why.  I'd LOVE to hear about her, and I know most here would too.

Wer love ya Jon.

I can't tell you how sorry I am, my friend.  We are still praying for you, and expecting a miracle.  We'll add the families of your friends to our list.  News like that is always hard to take, but even harder when one is dealing with a similar issue.

Please don't hesitate to post!  You need to let off some of the load, and we need to help you carry it.  You are there for us when we need it, so don't be selfish and deny us the chance to be there for you.  Don't forget you are loved.

Jerry

Me thinks that i wish you well and although i can't give you a magic cure, my wishes are with you and maybe someone can help with the fatigue.
If we could hold hands like brothers i would.
My arms albeit distant are here for you whether you want to swear or just talk
Just try me Jon.
Colin.

I don't know John, but I do know he probably doesn't want to read all the bickering on this thread. If it makes quality of life better, I say go for it. I know your Dr.'s will take care of you and wouldn't have suggested something like this without thinking it out first. Oncologists are a whole different breed of Doc. as far as I'm concerned. Good luck.

My apologies if I've offended anyone- just keep in mind that Jon's reading. Everyone gave their opinions and it's just that. Emotions are running high here, let's everyone just take a deep breath. No one else can make his decision, when you consider all the drugs that are probably being pumped into him, this is pretty small time.

Not running. Ran. Seems you've decided to try to stir something up again.

My apologies again. Look it seems as though all I can do on this site is piss people off. You guys saved my life, but it seems as though I'm done here. Wishing everyone PFDN.Good bye.

Oh, stop being so thin-skinned. This was resolved over a week ago, and now you're bringing it back up. No need to resolve that which is already resolved.

Bite me Brew- the second page of this thread didn't show up on this untill a few minutes ago.AS far as I knew- this just happened.

NancyB wrote on Mar 7^th, 2010 at 3:11pm:

Bite me Brew- the second page of this thread didn't show up on this untill a few minutes ago.AS far as I knew- this just happened.

Actually it showed up on the third of March.

            Potter

So now I'm either a liar or an insensitive jerk? Can't possibly be a technical problem with the site or my internet provider? Thanks,  my time is most definitely done.

Enough! 

It's time to show consideration for another's feelings here and forget our own quest to be right and have the last word.

Jon, wishing you peace as you endure this disease. Am also very sorry to hear about your friends.

Christy

jon i dunno if this helps but mom is pulling through pretty good with her chemo. her moral is up and she looks good.

well now...said I would update so here it is....

My PCP does NOT like the idea of ritalin....surprisingly has asked me to try herbal therapy. Worth a try and I appreciate she is not taking the easy way out...tested for b12, vit d, epstein barr, thyroid, others I can't recall right now, testosterone pending...all negative so far...

Burying my friend Ilene tomorrow...the grief has tempered and now we celebrate the life of a special woman...a life well lived that touched MANY...I am so sad and grateful at the same time...if that makes any sense....

I recognize that I "share" all the bad stuff that happens to me in this life...I recognize that you all have HUGE hearts and support me all through it anyway...but it's all too easy to fall into the self pity pit and I've been blithely sliding down the sides...it aint fair to keep dumping crap on friends....it stops now.

If I need help in the future, I will ask... with no doubt the help will be there when needed. Until then...my prayers, thoughts, vibes...and love, is with you...be well paisans...

Best,

Jon

jon019 wrote on Mar 14^th, 2010 at 4:59pm:

I recognize that I "share" all the bad stuff that happens to me in this life...I recognize that you all have HUGE hearts and support me all through it anyway...but it's all too easy to fall into the self pity pit and I've been blithely sliding down the sides...it aint fair to keep dumping crap on friends....it stops now.

man if weren't for hardships and bad times this site would be out of business. if sharing your troubles and worries with us helps you then this place is serving its purpose ;)

One thing that may be of help for fatigue - a high dose of CoQ10. I routinely do this and find I have noticeably more energy and a higher body temperature (mine is usually a notch below 98.6) CoQ10 goes to the mitochondria where it plays a role in some basic energy reactions.  There is also a supplement of reduced NADH that works in a similar way.

Eleuthero (siberian 'ginseng') is another herb that is often used for fatigue - cheaper than regular ginseng, although a larger dose is generally needed. Ginseng itself, or Ashwaganda ("Indian ginseng") are other things to consider.

thanks Monty...been using coq-10 for about a year now (100-200 mg)....haven't noticed any effect positive or negative...maybe should up the dose

re Siberian ginseng....that's exactly what my pcp recommended...totally amazed me as I had never run a cross a doc who was willing to go outside the accepted pharma (she IS Russian...and they DO think different).

been using for several weeks now and danged if I don't feel better....

On an update note....we all well know that the beast delights in morphing...tricky bastard...but knowledge is power...and once you know that, an elbow to the chops and a zig when "it" expects a zag does wonders.

This newest beast has decided to morph and that my bones are a tasty target...means the 9th doc in this journey...I tire of the exercise but NOT the fight...

Best,

Jon