Newly on Revlimid-( month 2) Swinging from constipation to diarrhea which I think is caused by too much treatment of the constipation-taking miralax- trying different dosages-senna tea-drinking lots of water. Any other ideas? I hate talking about this-

Is anyone else dealing with relentless charley horses in their legs and feet? I try to take enough magnesium and potassium to slow it down, but if I take the full dose of magnesium it makes the gut issues worse. I do have relief with Homeopathic Leg Cramps pills, the ones you put under your tongue, as well as those you swallow. I keep the bottles by my bed. But sure wish it would stop. The pain is so intense!

Anyone have severe diarrhea from Revlimid. It’s just awful and I’ve had it for years. I take Welchol but still have problems. Can hardly leave my house at times. Any advice would be great. 😊

Not had any trembling as a result of Rev, but of course the meds will give serious digestive issues, including diarrhea. For that, I would suggest that you take a probiotic after your first meal of the day, and then take cholysteramine (if prescribed by your doctor), after lunch and/or dinner. I take it later in the day, usually right after the evening meal. You will need to take these whether or not your regimen has you off meds for a period of time.

Dry Mouth, loss of taste with some foods, but not all. Neuropathy in feet only but had that before any treatments. Was put on Gabapentin (300mg) twice a day. Would like to know if there is a successful foot gel, oil, or rub on treatment that has been effective. I don't want more pills to take. Some loss of balance that is hard to describe but seems most related to the Neuropathy.

On my second clinic trial, both BiTE. Very bad muscular and joint pain.

Hi, I'm not a patient, but my husband switched from SMM to active MM, and we are entering the 3rd cycle of chemotherapy, March 8, according to the RVd protocol. From side effects, I would single out, in addition to mild neuropathy, pain in the muscles and ribs, currently, which makes it slightly difficult for him to move. Do we have anyone with a similar problem? Thank you and God bless all you brave warriors

Are you ready to get moving? HealthTree Moves 30 day fitness challenge starts today! Click on the link to learn more https://healthtree.org/myeloma/community/articles/healthtree-moves-march?fbclid=IwAR3xcUWwovRWGZYTHIoxFq3p78H8DKKlXZ0MAj0slkoBqD4GkjvyKrWWWMI

Anyone had trembling as a result of taking Rev?

Hi everyone! My name is Avani, I am a chiropractor and personal trainer AND a myeloma warrior! I am excited to share my personal experience along with my professional expertise about so many things related to what we go through with regards to movement and diet. It's Myeloma Awareness month and I see Health Tree has a movement challenge this month and I am going to help out as much as possible with tips. Please ask me your questions, and I will be sharing my own tips and experiences with you all to let you know we are all here for each other. I just downloaded the HealthTree Moves app, too, so I hope to share on there frequently. Tip for the day/week/month: HealthTree is encouraging us to move for 20 mins per day! Having trouble getting your body moving, out of bed, off the couch because your body says "NO" even when your mind says "GO"? I know 20 mins sounds like a lot, but did you know you don't have to do it all at once? Science shows moving in 10 minute increments is very beneficial! Find a friend, neighbor, dog, family member to join you for a walk for just 10 minutes, and try that twice per day to get your 20 minutes in. Someone told me she will schedule a "walk and talk" by phone with her sister because they live in different states. Another great way to have a walking buddy to get you moving! Maybe you can only do 5 minutes to start, that's okay! Take 4 walks for 5 minutes each and you'll get your 20 minutes for the day. Can't walk? Then swim, use a stationary bicycle, or sit in a chair and march your legs and wave your arms around. Too cold or rainy outside to walk? Walk/march in place to music or while watching tv/movies, or turn on music and dance around if you can. Science also shows exercise benefits are CUMULATIVE, which means you can spread out your movement for the day, or week, and still get the same benefits from doing it all at once. I hope to keep up with this community well beyond awareness month. I am one year and 2 months past my stem cell transplant and have made huge progress in the last 4-5 months, but I still have days where I need motivation from others and I KNOW this community is just what I need! Have a great day, everyone!

I developed neuropathy in the induction phase of treatment (bortezomib) preparing for the SCT. Was able to minimize and stabilize the neuropathy in the feet through massage. Rolling the bottom of my foot and toes over a small cork ball and a small wooden roller pin helped to stimulate circulation and has prevented the neuropathy from spreading. I also tried acupuncture but I found that a foot massage was more effective for me and did not require additional meds with unpleasant side effects.

Hi I’m from New Zealand and unfortunately we have very few treatment options available.We have one of the lowest drug funding in the OECD.countries.Anyway I have had no taste and what can be described as a burning mouth/tongue for the last 18 months on Revlamid.Just reduced to 5mg to see if that helps.No ulcers or blisters but am using a mouth gel to relieve.Had a SCT March 2021.Has anyone had this side effect for such a long time.Started on 15 mg of Len to begin with.Many Thanks

Tingling toes and fingers are very annoying. Makes it hard to grasp items, turn pages or handle any small items, and am always dropping things. Pressure on fingers and toes helps, but not really useful.

Has anyone found a solution to the infamous Revlimid rash? I am taking 5 mg. and still getting the rash.

Has anyone experienced low blood pressure while on Revlimid and Dex? I was on two meds for *high* blood pressure but recently my blood pressure dropped dramatically. The doctor has removed one of my meds and my pressure is improving. I am not complaining at all about being able to eliminate one of my meds, it's just strange and sudden. I am on Revlimid and Dex for high-risk SMM. Thanks!

My mother has suddenly fever for ever a week and blue feed. It seems to put her down and as more depressed even though she is taking antidepressants. Does anyone have fevers?

Happy to report on Revlimid again after 2 years, and NO side effects. However it does lower white blood cells and related items.

Do any of you get muscle cramping from Revlimid? I’m on 10 mg for 21 days with 6 mg of Dex and subcutaneous injection of Daratumumab once a month? If so, is there anything which can be done about the cramping? Thanks.

When, my husband was diagnosed in 2001 with MGUS and then 5 years later with myeloma, the first two thoughts that came to our mind is what he needed to do to survive this and how much was it going to cost? We were never told about the financial assistance that is readily available to cancer patients and specifically for Myeloma patients. It was only after the fact and many years later that I understood how we could have saved dollars and our savings could have remained intact. Even with good insurance we paid heavily out of pocket. I encourage everyone to ask about the cost of your care, understand your insurance and seek out help before the burden of debt overcomes you. Healthtree for Myeloma offers Financial monthly webinars, financial coaches, newsletter articles, and financial training as well a host of financial resource links for you. Even if you think you're ok, it doesn't hurt to get a second opinion about SSDI, Medicare, ADA, understanding financial resources that are available, and anything financial. Let us help Diahanna Vallentine