Joint and Muscle pain?

Hi David,

Thanks for getting back. Good to hear from someone my sort of age on this.

If you don't mind me asking, how long were you on Imatinib before you stopped and also, did you find the joint, bone and muscle pain gradually got worse before stopping? Was it localised to a specific area I.e your ankles? Sorry to hear your still having issues. Have you had CML long?

I really hope you get somewhere with your therapist, if I find anything that makes an impact then I will be sure to let you know. Its great that TKIs treat the disease but at the moment I'm in a bit of a low spot with the pain on a daily basis.

Thanks.
John

hi all..i been diagnosed a month ago.having had hodgkins lymphoma 3 years ago.
i am a 39 year old male and am currently on 400mg of glivec.
i too have moderate to severe pain especially in my right leg, to overcome this pain and make it managable i take 200mg of ibuprofen, which at the moment is very effective,i have tried several other painkillers but ibuprofen seems to be the only one working,my consultant has told me that this pain should ease over time .i wish yoou all well..

Hi David and Jas.

First of all David, its good to hear that your physio is working so early that you are seeing a difference. With regard to your Imatinib experience I had 7 month of gradual build up of tingling, aches, burning, joint pain that I was complaining monthly also. My consultant decided to suspend Imatinib for a few weeks which turned out to be six! Mind you after MRIs confirming nothing was happening with my aching hips and spine I gradually seemed to return to normal (well near enough!).

I was then switched to Nilotinib 300 mg twice a day, at first I felt great! I was feeling like I did before diagnosis. I did strain my mid back a little at work, but that was 5 month ago. I seem to get pain everywhere from neck, shoulder, spine, hip, knees and arms. In the last 3 month or so I have started to get tingling in my fingers and down left arm, like nerve pain. Its got me worried sick. I suppose the million dollar question is this muscularskeletal or TKI related? Bearing in mind before I strained my back I had 2 MRIs of my spine saying everything was normal. It seems to be worse if I'm tired, heavilly increase activity, or had long day at work.

I have googled Nilotinib and tingling or neuropathy is apparently a side effect. I have tried being off Nilotinib for 7 days but I seen no real improvement, a little like I saw no improvement 1 week off Imatinib.

So I wonder has anyone suffered tingling sensations on Nilotinib or any other TKI? My consultant is suggesting a possible reduction or switch but I don't want to jump ship if this is not TKI related. Hence me wondering if anyone else has suffered the same as me?

Hi Jas.

So sorry to hear you've been diagnosed. I am also sorry to hear that your experiencing joint aches on Imatinib. I would say that is very common for this to happen from what I've heard and usually the side effects settle gradually over the next few month for the vast majority, so try not to worry too much. Also there are many a TKI variant if Imatinib doesn't agree with you.

There are so many people who will offer you support for your questions on here so never feel alone in asking a question.

Take care all.
John

Hello John,

I'm terribly sorry to hear about your painful encounter with Nilotinib. I, myself have been diagnosed with the disease for 7 months (34yrs female) now and was immediately started on Nilotinib, 600mg daily. During the first week of TKI, i felt mild bone pain that localized in the shin area of my right leg which of course was a first for me. The bone pain was similar to how David described it, dull, but mine was accompanied by itchiness from inside the bone itself! I also experienced negligible numbness in my toes (mainly my 2nd and 3rd toes). And let's not forget the irritable tingling sensentions i'd get on arms, also very negligible and mild that i barely noticed when it started. Still, it certainly wasn't there before the Nilotinib regimen. Even though the pain/itchiness and numbness/tingling were mild and sporadic (once or twice a week at most which lasted less than a month), it gave me a good scare enough to book an appointment to see my clinician from get-go. Like many people on this forum, i was advised it was TKI's related, grade 1-2 nothing to be alarmed about. Also i was specifically told that because the pain wasn't debilitating enough i was to continue with the initial dose regimen. That advice rendered me feeling both helpless and angry for first time since my diagnosis. To the point that i spent all the time i could spare (even during lunchtimes at work) fervently reading about the disease and the nutritional/ physical health publications in hope to accomplish two basic understanding of; 1. CML as a disease and its available treatment therapies, and 2. Physical health and nutritional dietary strategies to help combat the possible adverse effects of Nilotinib. Long story short, in the last 6months i implemented a mild physical exertion in the form of daily 3-4km jogs to and from work. I also changed the food i eat (but not so dramastically) to include lots of fresh fruit and vegetables that contain plant vitamins A, E, and C and Omega 3 (the latter from fish with little to no mercury stores such as blue mackerels and sardines). This type of lifestyle change may seem rather severe to consider but i rather see it as a way to help my body to mitigate and prolong the invasive adverse effects and toxicity of the TKI. It work wonders for me from the start in such that those initial pains mentioned earlier dissipated within the first few weeks of my lifestyle change and i haven't experience any of those pains since. Touch wood. No, knock on solid-hard wood to keep it stay true! In a way i was blessed that i've found something that works so well for me personally, because i know that every person's physical anatomy is made up differently from the next person. So i sincerely hope and pray that you would find your fix to make those awful pains history so that you may have your wellness and wellbeing back for yourself and your family.

Best of luck with your cml, John.

(Ps. For Sandy and Davewell, i was relieved to get my 6month PCR Bcl-Abl reading to 0.08% IS, down from 0.9% of previous 3month's.)

Hi

Ellie, first of all many thanks for your very kind wishes, and ofcourse your input regarding dietry change. I have also looked into diet changes and have been bread/pastry free for the past 3 month.

Despite spending time away from the forum, I seen your post and felt compelled to respond with thanks and hopefully some words of encouragement. It is very positive that you have seen better results on your pain level and your general well being. I think your dietary change can only be positive holistically. I think you are very much in the early stage of treatment, the fact you are seeing a decrease in your pain bodes very well and most patients have a bumpy first 12 month, physically and emotionally. Give yourself time and be kind to yourself. Well done on coaching yourself on scholarly articles over lunch, again the more you know the better (healthy balance ofcourse). Your emotion of anger toward being told how you should feel about your pain is something I have a lot of sympathy with. I also saw your post responding to mental/emotional issues and despite being very early in your diagnosis you seem to have a very good handle on things.

There seems to be a wide spectrum in opinion from one doc to another from my experience, in relation to what is normal with side effects. I think this forum reflects that. I sincerely wish you all the best and you continue to see improvements.

An update regarding myself; My pain is a strange phenomenon, in the sense it is like a movement roulette. This is best described as; every time I move, I don't know if I will pull a muscle, get joint pain, ache, will it go on for days or weeks. In the morning my hips ache from pressure pain from lying on either side. Stiffness is there too. Feels like an arthritic problem, I have a persistent elevated IGA, other markers are fine. It can be so frustrating. Frustration over the past 4 year has been my biggest emotion.

I have attempted to spend some time away from the forum, indeed the CML community. For one reason or another I have found myself a square peg in a round hole with my CML. I have travelled the length and breadth of the country and emailed people internationally as well. I basically feel like I don't champion the same "normal life" soundbites some professionals and indeed patients champion. For me having CML has been anything but a normal life, I have lost many things from my career, to being able to dress myself with ease. This has all had a massive effect on my family. I have stressed time and time again that I seem to be a minority. However minorities exist, It has been hard being told by some people without CML that people lead a normal life, when I have CML and don't. I had no prior health history before starting to feel unwell in the months leading to diagnosis.

Moving forward I have been in discussion with a consultant about a NM bone scan to rule out a co-existing histiocytic disorder in a few weeks. It was also mentioned to have a trial of Hydroxeacarbomide, then maybe an empiric trial of iv pamidronate or sub cut Denosumab. 

Failing all this and no improvements from these measures, an Autologous Transplant has been suggested by 2 well respected consultants to potentially reboot my immune system. Whilst not fully removing the potential for disease relapse, it has been discussed as a less evasive option to trial. It was indicated the transplant would potentially be enough of a hit that my peripheral tissue myeloid compartment would be replenished by cells with normal genotype? Some of my musculoskeletal issues started in the months leading to diagnosis. Some docs have shrugged at the correlation of bone pain, weight loss, crepitus, constant colds, night sweats *before* diagnosis... which to me is mystifying. 

With regard to Sandy and Fibromyalgia, thanks for the link. I have looked at this topic in some depth and it would seem to be a bit of a catch all for chronic pain from some in medicine, it is definitely a misundertood phenomenon. In the last chat I had with a BMT Prof' he encouragingly indicated that Fibro was perhaps the end product, but attention needs to be on the root cause, and if it can be stopped, I very much agree.

I have had some improvements this year, and I am pushing my hardest to avoid transplant. I think being on high dose Codeine, Pregabilin, Ibuprofen, Paracetamol on top of full dose Bosutinib may be the reason for feeling small improvements in my daily functions. With the pain relief there is a trade off too ofcourse, all a balancing act. Pain wise, the improvements are very sporadic, as is my ability to do activities with ease. Overall, if I was 10/10 a year before diagnosis, I was probably 7/10 six month prior to diagnosis, I am now a fluctuating 4/10 four years on. I still get stuck pulling doors, don't lift things, get into/out of chairs like an old man, I perform tasks with trepidation and look blocky. My son is now 4 and I haven't lifted him for a few year and I am desperate to improve for him, work, the future. Fatigue is also a big issue.

I hope I have made anyone feeling pains ealry on at diagnosis better as pain seems very common until things settle, but also I have been realistic that for a minority this is not a gift or a walk in the park. CML is a serious condition, which impacts us all in different ways.

John-Paul

Dear John

I have read your story and watched the video where you discussed your side effects with the CML community at large, and I wanted to send you my good wishes.  Your experience with the TKis and with this condition of CML is so different to that of most patients, and it just seems so unfair to me that you should be having these life-changing side effects to a medication that works so well for most.  I can fully understand your frustration and I truly hope that somewhere, somehow, someone will be able to bring you relief from this debilitating pain.

Even though it will be small consolation, I would also like to make you aware of what an inspiration you are to others.  Your experience makes my journey sound like a walk in the park, and I am inspired by your determination and positive attitude in the face of so much pain.  I hope that this doesn't sound like an empty platitude or condescending, and I apologise if it does, but know that there are many people thinking of you all over the world and hoping for some relief for you.

With good wishes from South Africa

Martin 

I feel you. I've been on Gleevec 400mg for 11 months and I can't take the pain anymore it's unbearable . I have pain from my head to my toes and I'm switching to Tasigna 300mg twice a day because my levels went from 5% to 27% . My oncologist wanted me to do 800mg of Gleevec but I told him no way possible. I told him I wanted to try Tasigna or I was getting off everything and just going to let life run it's course because I work construction and the pain I have makes it very hard to work more than 4-5 hours without crying . I used to be a bodybuilder and haven't been in the gym since I started Gleevec because of the severe bone pain and pain in all my joints. I can barely hold a 10lb dumbell in my hand because of the sharp pains I get. I lose my hammer at work sometimes because I get sharp pains and drop it or just lose strength. I'm praying that Tasigna gives me some relief . I also need to go back to my bodybuilding diet but just haven't had much of an appetite at all. I just need the pain to go away about half so I can start working out so my appetite comes back and a little energy. Thanks to everyone who reply's because it gives me some hope that at least half the pain might go away. 

I'm on Tasigna and so far so good within the first week. Some pain has subsided and I'm feeling a little bit better but we will see after a few months of the Tasigna being in my body what it does to me. I work outside and I'm not looking forward to wearing long sleeves because Tasigna can cause a rash if I'm in the sun and I had to change all my body soaps and deoderant to no fragrance . If the bone pain goes away I can live with being neon white lol

Coupla things come to mind:  red painful lumps in your calves sounds a lot like erythema nodosum, which is annoying but treatable and eventually goes away.  Bone pain/muscle spasms - maybe magnesium deficiency due to the TKI?  See Scuba and Trey.  Possibly also, deep vein thromboses?  At any rate, go see your primary care doctor, not the onc.  And try to push back against the catastrophic thinking - you will probably have the Best Time Ever in Europe and walk up a storm.  Gotta get on top of this problem first, that's all.

I had erythema nodosum many years ago and they never figured out why, having ruled out the usual stuff for that.  My doc assured me that was often the case.  It took many months to wean off the prednisone, but it had worked immediately and steadily - in the meantime, it gave me tons of energy and made me happy all the time.  I remember it fondly.  Sadly, no one can stay on the magic stuff because it wreaks havoc on every organ system, longterm.  Interestingly, one of the causes listed for erythema nodosum is leukemia - fancy that - but this was years before my diagnosis.  Makes me wonder, tho' - was it the first harbinger of disaster?

Let us know what happens.

I hope you have time to see your primary care doc before the trip - if it is erythema nodosum, you need to jump on it quickly with professional medical guidance.  It may involve a punch biopsy, so you'll need more time.

I do find that anything I exert myself physically to do (yard work, walking, carrying groceries and laundry, old lady stretching videos) makes me inordinately sore.  I usually retreat in alarm, frustration, dismay and shame and stop doing whatever it is that made me sore.  Yeah, I know - thereby ensuring that the whole cycle gets worse . . .

Hi Harriet 

so sorry to hear about your pain. Restarting see if your doctor will agree to 50 mg instead of a 100. Def less side effects and hopefully just as effective with the CML. What helped persuade my husband’s oncologist was showing him research papers showing good results at this dose. Scuba posted links to Kirk’s recent post I believe. 

Magnesium and vit D can help. My husband also sought out a chiropractor.

keep well, Louise 

My oncologist agreed that muscle cramps in my calves and fingers can be from the Gleevec.