I have lgll and was diagnosed about 9 months ago. My doctor is strongly encouraging me and I suspect next week will be firm as my counts have almost bottomed out. He wants me to go on prednisone treatmensta nd perhaps chemo. pills.. I have put this off instead have focused on eating healthier and losing weight and getting some more exercise (not easy in wisconsin winter). The past two bllod tests have really dropped and i am very fatigued. Has anyone gone the prednisone treatment route? if so how did it go? with the side effects? Any input would help me. Thanks everyone

Sorry to know that you were diagnosed with LGL. Hang in there. Sounds like you and your doctor are not in agreement. Starting a treatment is an important decision and we must understand what the best route is with proper knowledge. If you are symptomatic (fatigue, fevers, infections, night sweats,etc.) and your bloodwork indicate abnormalities, I think eating healthy, losing weight and exercising could help you feel better but that alone shouldn't be considered effective treatment for the disease in such case. Prednisone alone may or may not help. Yes there are some side effects. Also, look into G-CSF injections to boost your neutrophils. Continue to talk to your doctor!

Thank you for taking the time to comment. I really appreciate it. Have you had to go through treatments also?

Please check my profile under website. it's a Facebook group.

Matt, I was diagnosed 18 months ago. No symptoms, sweats, fatigue, etc but low neutrophils. Went on prednisone for short time as well as methotrexate and my rheumatoid athritis meds, plaquenil and naproxen. I was weaned off prednisone. My only side effect was difficulty sleeping. Still had low neutrophils but no symtoms. About 12 months ago, I went back on prednisone for about two weeks. When arthritis flared up about 2 months ago, increased methotrexate by 2.5 mg and neutrophils improved (still a little low). l do not have any other symptoms; sometimes need a short nap after dinner, but that may come with my aging (ha)

Matt - my 80 y.o. Mother was diagnosed 1 year ago. She had low platelets and low neutrophils. Was put on pred and methotrexate. No real benefit so her dr took her off and went with a wait and see approach. One year later, she recently bottomed out on neutrophils (.2). She was just put on pred and cyclophosphamide. Within 2 weeks, her neutrophils are up (from 0.2 to 1.8). No side effects whatsoever. We're all thrilled. Good luck

well begin the prednisone treatments today and next month the cyclophosamide. here we go - thanks everyone for your input - it is helpful

Hi Matt, I was diagnosed in 2010 and my first treatment was Prednisone and Methotrexate. The side effects I experienced were alertness and ability to breathe which were great, but I also gained a lot of weight, like 25 pounds and I could eat and eat! ( I craved catfish!) I hope to hear how you're doing. Teri

Good morning Matt, I have had LGL for 5 years and have been on all sorts of treatment plans. I was on predinsone for a year-a little longer than I liked. I did gain a lot of weight and that is a side effect. You can also become irritated or jumpy. You might swell in the face-I use to joke that I had no neck! LOL! As for the metho I have been on that as well. In my case the only side effect was fatigue (but with LGL you have that any way) and nauseous-which is easily treated now a days. Usually doctors will start you off on a small dose to see how you react and go for there. I have 'bottomed out' several times and waiting to start treatment can make getting back to 'normal' difficult. So my advise is don't wait too long. Remember if the treatment makes you feel horrible you can always stop it. I always remind my doctor that I am in charge! LOL! If you have any questions or want to talk you are welcome to email me at sarasotap@comcast.net. Good luck!

Hi everyone, this is so helpful to hear people share their experiences - it does give a feeling of not being alone. Can I also ask another question - perhaps this is more personal - Has anyone had any emotional/mental issues stemming from the LGL? I have been facing some stuff that seems to line up timetable wise. A counselor friend of mine asked me to do some research and aside from the normal anxiety and perhaps fear there is not much out there. What I am facing is different than those. just thought I would check

Matt, I have chemo brain already from chemotherapy related to breast cancer, so I can't say what the cause is, however, I do experience mild depression. In regards to your treatment, You may already have seen this latest study re treatment protocols. Good luck! http://bloodjournal.hematologylibrary.org/content/117/10/2764.full Treatment summary: Our therapeutic approach is summarized in Figure 5. MTX at 10 mg/m2 orally taken weekly (at split doses of 5 mg/m2 in the morning and 5 mg/m2 at night) is our initial choice for treatment of LGL patients with neutropenia. If such patients have severe neutropenia (ANC < 200), then we add prednisone at 1 mg/kg per day orally for the first month, with tapering off by the end of the second month. For LGL patients with anemia, MTX on the same schedule is the choice of one of the authors (T.P.L.), whereas cyclophosphamide at 100 mg orally daily is the first choice of the other author (T.L.). Immunosuppressive therapy is continued for 4 months, and then the patient is evaluated for response. In case of failure of primary therapy, cyclophosphamide (100 mg orally daily) is initiated by one of the authors (T.P.L.); the second author (T.L.) also chooses cyclophosphamide for neutropenia patients but uses CyA for anemic patients. CyA is not used much by one of the authors (T.P.L.) and is reserved for patients failing both MTX and cyclophosphamide. Both MTX and CyA are maintained indefinitely as long as these medications are reasonably tolerated and disease response is maintained. In contrast, cyclophosphamide therapy is limited to 6 to 12 months because of the risk of bladder toxicity and mutagenesis. For relapsing patients, depending on the time to treatment failure, we propose to resume the initial treatment or opt for an alternative immunosuppressive drug that has not been previously tested.

I was diagnosed with LGL Leukemia about 8 months ago after a bone marrow biopsy. I'm fully covered at the V.A ., and my doctor prescribed taking 15 mg of Methotrexate weekly as well as an injection of 300 mcg/1 ml of Filgrastim. My counts slowly came back up from dangerously low to near normal in about 5 months of treatment. Now I'm taking the same weekly dose of Methotrexate but lowered my Filgrastim injections to every other week. I'm having my blood checked every month, and hopefully if levels stay good or even improve we'll get me off the Filgrastim injections. He and I are very, very happy with the treatment results. Hope this helps - when I was first diagnosed, I was shocked at the lack of good, current info on the internet regarding this disease. - john