New to site and ready to connect to fellow CLL people.

[SMS-not-cll]

Hi, this is my first post, and I look forward to reading all your information. I was diagnosed with CLL in January, 2014. My white blood count has fluctuated from 12k to 19k so I have not needed any treatments. I have developed two autoimmune diseases my doctors think are caused by CLL. My first, rheumatoid arthritis, started at the same time of my CLL. My flares have increased from my hand joints for a day or two to my shoulders and hips sometimes lasting a week as it moves from joint to joint. My second autoimmune disease, erythromelalgia, was diagnosed this summer. This disease greatly limits my travels because it affects the blood/nerves of my feet causing sever burning and tingling. The only true relief is by plunging my feet is a basin of water with a tray of ice cubes added.

I look forward to communicating with all of you, but I, especially, would love to hear from anyone experiencing these same conditions in hopes of finding some better solutions. I live in Cental PA and am also looking for doctors in a CLL research center in the NE USA who may have more knowledge and solutions to help me cope and regain my active life.

Thanks, SMS-not-CLL

[jettyguy1]

SMS. If I were you I'd strongly consider investigating and initiating an anti-inflammatory diet. It has worked wonders for me. Another thing I found in this forced march(not so much of a journey in my humble opinion) is that sometimes doctors will look and listen to our symptoms and they'll try to the best of their abilities to come up with a one size fits all diagnosis. I mean who can blame them...we tell him what's bugging us and then they come up with one syndrome or another. Next thing you know---they are asking you to take one medication or another. While thank God or the Universe, that we have doctors to medically help us if they can,there are often other ways to treat our situations without chemically medicating.(sometimes drugs may be our only salvation) I am very physically active ( martial arts,jogging, surfcasting,walking ) and have pretty much sprained and or broken, just about everything ..LOL!! So arthritis and nerve damage are pretty much my old friends. This is what has helped: first,eat a very wholesome diet. Cut back dramatically on the foods deemed inflammatory.( I gave up dairy,sugar,meat and 90% gave up gluten) Wow, what a difference in the nerve,muscle and bone pain. It's almost like it disappeared . Not quite,but by 90%. Then if you are drinking a lot of coffee or alcohol...simply cut back as much as you can. For TINGLING in your extremities ...supplement with vitamins B-12 and folate. Eat fresh caught fish. Believe it or not, add fresh clams to your diet...I think ,if I remember accurately, that 3-4 ounces gives you over a 1000% of your DR of B-12.(double check that though..but I am close) I found that adding Vitamin D supplements and eaten sardines(probably the most packed vit-D food pound for pound) really influenced the healing of pulled muscles and any bone problems. So slowly,but significantly,begin to walk 20-30 minutes daily, 5x a week . Four days a week try to do some sort of gentle stretching routine. I bet that you'll see a dramatic improvement in your life if you put the effort described above into your life. And i have seen hundreds of people do all of the above and feel dramatically better as an actual result. Just the same, get the green light from your docs or at least get their opinions, before you do any radical changes to your typical daily exercise or dietary regimens. And don't be shy about reaching out to experienced holistic oriented healers,nutritional experts and physical trainers---they will get you started in the safest way and often even be willing to interact with your docs to come up with an integrative,customized, health plan.

[SMS-not-cll in reply to jettyguy1]

Thank you for all that very good advice, jettyguy1. I have been following a routine similar for years, including vitamins, diet, yoga, and weight bearing exercises. It is just in the last month that my RA flares have prevented me from many of my exercise routines and daily activities.

I agree about all the meds. I will look into all your suggestions. I do have a great team of doctors who coordinate with each other, but I am am ready to try other methods to improve my conditions; thus, all your suggestions will be researched and possibly tried. Again, I appreciate your taking time to offer so many good strategies.

SMS

[PlanetaryKim in reply to jettyguy1]

Excellent advice, jettyguy!

[Hoffy]

Cll society site has good information on CLL doctors and other information that might help.

Be well.

[clljon]

I was diagnosed with RA many years before my CLL arrived. I had been a runner for over 30 years and shunned red meat and generally followed a healful diet and regimen. Tried an anti-inflammatory diet. I found myself running through the early RA pain and treating it with heat and cold packs and ibuprofen until I could run no longer. Then I began serious RA treatments with DMARDS , and progressed through oral meds to methotrexate injections to Enbrel to Humira.

I found out the implications of RA when our company insurance refused to insure my life due solely to my RA diagnosis. This is a serious life-changing disease.

I received my CLL diagnosis because my blood counts were being monitored monthly for my RA treatments. I told my hematologist that the CLL was not bothersome, compared with my RA, which was, by then, being treated with rituximab infusions. However, RA flare-ups were almost crippling.

Finally, obinituzimab infusions in 2014-15 put both CLL and RA into complete remission. The good effects on CLL lasted 2 years and am now in a phase 2 trial for single agent tirabrutinib (gs-4059).

My RA is now pretty well-behaved with only minor flares which I treat with ibuprofen. I’m holding my breath waiting for a major flare-up, but it’s been 3 years and going well

There is a paper from OHSU describing these surprising beneficial effects on both RA and CLL simultaneously. My experience is the subject of the paper.

Best of luck!