Muscle Relaxants for Pain?

[Franklin2021]

To follow up on the pain from Acalabrutinib and Venetoclax—Have any of you been prescribed a muscle relaxant to help with the pain? We are trying to explore if there is an orthopedic issue. I realize that we need to talk with his doctor, but just wondering what others have experienced.

[czbm]

I am on W/W but suffer from chronic pain having had eight spinal surgeries and two serious automobile accidents recently. I started a course of Tegretol for trigeminal and occipital neuralgia and found that it helped the pain in my back, neck, hips and even my knees. It seems to calm all of my nerve pain. Not sure if it's prohibited during treatment for CLL.

[Newdawn Administrator]

I was prescribed Amitriptyline at night as a muscle relaxant due to pain I was suffering whilst on Ibrutinib.

The effect has been mildly helpful mainly in inducing sleep but I have a severe back issue I’m awaiting investigation for and systemic arthritis.

Hope you find something that helps.

Newdawn

[Name-1 in reply to Newdawn]

Amitriptyline is antidepressiv.

[Newdawn Administrator in reply to Name-1]

It is Olga but it is also used as a muscle relaxant. The small dose I take is too small to be used as an antidepressant.

Regards,

Newdawn

[Name-1 in reply to Newdawn]

Yes.Only in the evening as a muscle relaxant anf fo easier fairs asleep.

[Newdawn Administrator in reply to Name-1]

Yes that’s how I take it Olga. It has limited effect really.

Hope you are keeping as well as possible.

Newdawn

[Name-1 in reply to Newdawn]

I am worry that loss weight.It is my problem.

[AnneHill in reply to Newdawn]

My bloodtests show I have low sodium. I am cutting the Amitryptiline to half a tablet. I feel more alert. I didnt expect that. Maybe after all these years it doesnt work as well.It can cause low sodium but I have no idea if my level will raise especially as the weather is so hot. My legs have nerve pain and are throbbing because I am wearing a dress and have bare legs. I hope you get seen soon, Anne uk

[Newdawn Administrator in reply to AnneHill]

Thanks Anne,

I only take 10mg at night and I’ve resisted an offer to double it as I don’t think it helps and it can leave residual grogginess as you’ve noted.

I’m not expecting to be seen anytime soon I’m afraid. I’ve been on the list for the hand clinic over 16 weeks now!

Regards,

Newdawn

[AnneHill in reply to Newdawn]

With all the medication I take its hard to know what causes what? I tried taking 20mg of Amitryptiline and found it too strong. I had epilepsy meds that mostly controlled the petit mal and the grand mal hadnt happened for years. The carbamazapine was stopped and Keppra given instead because of the Ibrutinib and now I have funny turns. But how many problems are caused by meds. There are side effects caused by low sodium inc fits. I have been given codeine plus paracetamol for pain. It helps but my back and legs are very unhappy. Covid has made seeing most doctors worse inc the neurologist. A moaning few days, Anne uk

[Davidcara in reply to AnneHill]

Here in the USA many prescribers will change Amitryptiline to noretripteline once a person reaches 65 years of age, per Medicare recommendation. Amitryptiline can lead to hypotension & dizziness in the elderly. So can noretripteline but, to a lesser extent. Be careful, get up slowly from a laying or sitting position. You do not want to fall. In addition, low sodium can also lead to dizziness and hypotension. I would try to get your sodium situation corrected. Adding salt is not always the answer.

[AnneHill in reply to Davidcara]

The doctor rang me when she saw the blood test results. The low sodium has been a concern since I started Ibrutinib 2 years ago. Need to find out why. I had a blood test on Tuesday. She will see the result soon. It was 129. 125 is dangerous. My blood pressure has never been a problem. Its perfect. I do get fedup because there is always something wrong with me! Anne

[Sojomama13]

Hi, Prior to and initially when I started treatment,I had severe bone pain and I was told to take Claritin, which worked great. Over time of being treated with Acalabrutinib, Obinutuzumab and Venetoclax, my leg cramps and joint pain were so awful, it was interfering with my sleep. My blood work revealed that my potassium was very low. My Doctor prescribed Potassium and it has eliminated most of my issues.

Best of luck,

Sandy

[Franklin2021 in reply to Sojomama13]

Sandy, are you doing the AVO trial at MDA? Was your potassium normal when you began treatment but decreased from effect of drugs?

[Sojomama13 in reply to Franklin2021]

Hi, I am doing the AVO trial at Dana Farber. My Doctor feels that it is a combination of medication and water consumption. I drink a gallon of water a day. I believe that I am probably washing away minerals and nutrients. I have switched over to Smart Water and I drink one liter of Pedialyte every day. I know that seems like a lot of water, but I cannot tell you how incredibly easy I can dehydrate.

I urge you to explore other methods of relief rather than just accepting that it is a side effect. Although I am on a study and get prior approval for trying other methods, I can tell you that you do not have to suffer without getting relief. I cannot eat bananas without getting incredible heartburn nor can I drink coconut water without stomach distress. Both bananas and coconut water are natural sources of potassium. I know it is frustrating, but a few very minor tweaks meant the world of difference for me.

Wishing you all the best,

Sandy

[Catnap7]

when I was on Ibrutinib and Venclexta I also used more potassium for cramps and pain. I did Pilates Rehab for my hips ( known to stall hip replacements) Keeping the musculature around the hip sockets in correct balance cuts down on hip pain as well as light movement in a heated pool I did both during my trial and it helped me through the 2 years.

I had trashed knees and hips from dancing professionally. It seems obvious to me these drugs are like magnets to our arthritic areas. ALL my pain completely disappeared a few days after stopping at the end of my trial

The hematologist DOES know about the joint pain on these drugs 1 in 100 get certain side effects 1 in 10 get others 1 in 5 get others...

Joint and muscle pain is 1 in 5 I remember signing the papers

Hope you can find some relief !!!

Catnap7

[Sojomama13 in reply to Catnap7]

Hi Catnap7, I also do Pilates rehab and that is a game changer. I had a frozen shoulder and it helped tremendously. I am currently utilizing for hip pain, I did competitive dressage for many years. I feel that the Pilates rehab also made the world of difference for me over standard rehab practice. Excellent suggestion.

Sandy

[Catnap7 in reply to Sojomama13]

Yes Sojomama13 .... I have been teaching Pilates and Gyrotonic rehabilitation since I retired from dance. I can't imagine life without this source for pain relief. This is interesting .... the last 3 months of my 2 yr I/V trial I felt like I was reaching an over saturated point with the drugs.. No matter how much work I did on my L hip and knee I couldn.t seem to make a difference I went for an x-ray....doc said to start looking for a surgeon. Waited till I ended trial and went off drugs. Well then the pain just disappeared. Point of this ??? My bones looked trashed on the ex-ray but I have kept my musculature in such good balance I don't need surgery. If it doesn't hurt... I'm not fixing it. Ibrutinib and Venetoclax was causing most of that havoc !

[Ellieoak]

For my low back pain the doctor prescribed prednisone for me in 5 days I was totally out of pain.