How did Rx for fatigue work for you?

[Ducksoup]

Seven years ago I was diagnosed with CLL. I have recently passed from W&W into Stage 1 Over the past several months my fatigue has gotten out of control. Moderate daily exercise, green tea tablets, tumeric, vitamin D, vitamin B, etc., plus acupuncture--all those things together are no longer enough. I recently had a sleep study and will get the results next week. This is "the last box to be checked." If sleep apnea or other sleep issues are ruled out, I'm going to make a very firm and very clear case to my oncologist for a prescription drug to help me manage my fatigue.

I would like to hear from those who have used Ridalin, Adderall, or other symptom-reducing drugs. To what extent did they improve your quality of life? How many more hours per day were you able to function normally? Were you able to do amazing things again--things I can only dream of now--like going out for dinner or attending an evening concert? I await your collective wisdom.

[AussieNeil Partner Administrator]

I hope you are able to find an answer to your fatigue - either from the sleep study results or Rx suggestions from other members that you can run past your doctor/specialist. If not, be aware that overwhelming fatigue is one trigger for CLL treatment. From the 'Guidelines for the Diagnosis and Treatment of CLL iWCLL; Dec2008 4. Indications for treatment

4.1. Primary treatment decisions

:

6. Constitutional Symptoms, defined as any one or more of the following disease-related symptoms or signs

:

b. significant fatigue (ie, ECOG PS 2 or worse; inability to work or perform usual activities)

Also, I have some sad news regarding W&W and stages in CLL. Unfortunately, unless you are prescribed treatment with an inhibitor drug like Ibrutinib, which you stay on for life, with CLL, you are either in W&W or under treatment. Treatment can happen in any stage, though it would be very unusual in stage 0/A unless the patient met some clinical trial criteria, most likely examining if early intervention (with something like vitamin D say), provided a better outcome than W&W.

Neil

[sandybeaches]

I believe some people have written that Ritalin therapy had improved their fatigue levels and that they were able to function better throughout the day. Just a word of caution about Ritalin - it may cause possible cardiac problems so it may be beneficial to have a cardiac workup done before starting the medication. I would strongly encourage you to discuss this with your doctors.

My young son in law ( 30 yrs old ) started Ritalin for adult ADD earlier this summer, and is experiencing severe cardiac problems now, and is under the care of a cardiologist. There may have been some underlying problem that was not checked for, so it is a sad and scary situation for the whole family.

However, many people have been helped by this drug.

All the best, Sandy Beaches

[halfdiamond in reply to sandybeaches]

I'm so sorry to hear about your son. I sincerely hope they can sort this out. Donna

[halfdiamond]

I can certainly sympathize! I am in stage 2 and have been diagnosed with post viral chronic fatigue (sorry - think I have mentioned this before). It has absolutely knocked me off my feet. I am an artist/writer and am not able to do either to any extent. Certainly I have a number of major goals to meet which are slipping by me at break neck speed. Frankly, I am angry and scared. I have not added green tea to my arsenal, and would love to hear from those who have. Personally, I would be very wary regarding trying Ritalin - however, that's just me. I sincerely hope you are able to find a solution as I totally understand it takes your life away. Please keep us up to date. All the very best in finding ways to regain your energy and with it your quality of life. Donna

[bobbatt]

I got one word, Nuvigil. It has given my life back to me. Search my posts and you read about it. I went from coming home and being a unmovable lump to fairly active again. The first day i took it I came home from work and cut half my grass. I haven't been able to cut my grass for around a year. Before I had to plan any type of outing, even just going to the store. I would always made pans for a Saturday so I could spend Sunday recharging. I have traveled almost the same path as you. I had sleep studies done. I was on a CPAP for a year and it made no difference in the fatigue. I've had a nuclear stress test. I went to my GP about a month ago and told him that I was about ready to give up the ghost. He told me that he is finally convinced that it must be the CLL causing my fatigue. I told him reading about Ritalin and other drugs like it. He said no to those by he said let's try Nuvigil. He gave me 3 weeks of samples to try. After taking it for a month I still have that boost through the day and it starts wearing off later in the evening. I sleep better than I have in a long time. Now it doesn't give me the energy to run a marathon but it does give me the energy to maintain a normal life. There are two drawbacks of Nuvigil. First they will not prescribe it if they suspect a hint of heart problems. Second, it is very costly if your insurance does't cover it. Nuvigil does have a plan to cover the cost but I didn't have to try it because my insurance does cover the generic form of Nuvigil. I could pay extra for the brand name but the generic is giving me the same results. I about fell over when I first pick up the prescription. My co-pay is $10 but the out of pocket would be $598. That's $20 a pill! Go luck.