Muscle tightness in legs 10 months after Allo believe gvhd

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I had an Allo transplant 10 months ago. I am 100 per cent donor. Before transplant had tumour on spine which had radiotherapy for. Was bed bound for about 3 to 4 months. Could not initially put weight on my legs then learnt to walk again slowly with crutches.  Had first covid and flu jab in December and after this got gvhd not sure if related to immune response. Mouth ended up blistering which now cured after steroid mouthwash, skin gvhd - dry blotchy skin with looks like bruising. On prednisone 5mg daily after bringing it down from 25mg, liver function still high which is why still on steroids. Biggest issue is very tight muscles around calves and thigh which often makes it difficult to walk or exercise. I feel my muscles in legs are getting stronger but also get tightness also gets stronger. This tightness varies but does not seem consistent with exercise. Feel like it is holding me back improving. Dr believes it’s down to lack of exercise but it does not go down if I exercise. I walk upstairs in house 2 to 4 times day as well as walking between kitchen and lounge in home and that without any other exercise would give me very slow increase in strength. Before December had more energy and was walking 20 mins on running machine  after dec and gvhd my levels of energy went right down. Has anyone else suffered similar tight muscles? Was it gvhd? Something else? Did it go away eventually? I take vitamin B complex, magnesium, multi vitamins. Can anyone help as I am at a loss and feel like I am going backwards. Please help

  • Hi  and welcome to our little corner of the community. Sounds like you have had a rough time and it is acknowledged that the post SCT recovery can for some folks be long and challenging.

    I had two Allo SCT for my rare type of skin Non Hodgkin’s Lymphoma. The first in June 2014 with the second in Oct 2015…. it’s a long story so you can hit my community name  to see it but make a cuppa.

    I had various GvHD problems following my second Allo but my main long term problem was my massive muscle wastage. I was also still dealing with bad nerve damage going back to my main chemo in early 2014.

    I was so I’ll during my second Allo I was basically off my feet for weeks including a few visits to the CCU….. so when I left the SCT Unit I was in a wheelchair as could not walk more than a few steps without falling over……so I had about 4 months of  physiotherapy to get me up and walking.

    But the muscle pain in my legs just stayed so following one clinic appointment my Specialist Cancer Nurse (SCN) took me down to our local Maggie’s Centre and enrolled me in a weekly men’s circuits class run by a cancer rehab trained instructor from our Local Authority Sports Centre. 

    He set each one of us specific exercises to do on the day and for us to do at home……… the pain and ‘tight muscles’ were off the scale so was popping strong pain meds but about 18 months later I asked my GP to remover the repeat prescription for all my pain meds…… and have been fine ever since…… so from the end of my second Allo SCT to actually removing my pain meds it was about two years…… two years very hard work requiring a lot of perseverance on my part and even more tough love from my wife to help me keep going and push through.

    My GP, Heamatology Consultant and my SCN all agreed that most of my muscles had to be retrained…… just in the same way that your all new immune system is still growing and developing its ability to fight infections.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike, I see you have been through a massive amount, even this past weekend sorry to hear it. Your experience and knowledge is so invaluable. I am a newbie in comparison and find the struggle so difficult, especially when you seem often to go backwards,, and often make no progress, although I know in background the body is working hard to correct its issues. Thanks for being there.

  • In the early days it does feel like two steps forward and often two or even three back but when you go into SCT you have to see it as a long game.

    Keep focused on the greater good in all this - you will get there…… As a family we agreed that we were all allowed a ‘pity me party’ but the party could only last a day then the rest of the family dished put the ‘tough love’ to keep us on track.

    The journey and destination is often does not match what you would look for or even hope for but it’s all about life and not letting the ‘steps back’ define you…. but it’s more how we control our path and aim to define ‘our’ way forward within the post SCT ‘left overs’ that often come along 

    As you will have seen, back in 2014 SCT as my last hope……. But 8 years on there are new treatments that have come on line so there are next steps I ever need them.

    This is an old rambling thread you may want to look at Life after a SCT - A Survivor's Guide

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Sounds very basic so I apologise if it’s something you have considered, but could it be something simple as introducing stretches into your routine. I am no stranger to tight leg muscles due to having long legs. Sometimes I find myself blaming my cancer or treatment for any health issue I have but I am slowly learning sometimes it is just the fact that I am human! Your body has been through so much the exercise you are getting sounds great. As these muscles are gaining strength and tone again they could just be really tight and need some love! If it is something you aren’t doing and will be introducing take it slow as you don’t want to overstretch. 

    That being said if it is impacting your life keep going until you get the help you need!

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant

    Nbk112

  • Hi Hardtimes, this is my first post on here so bear with me. 

    I'm currently 7 months past Allo SCT. Before diagnosis (March 2021) I was 30 and running multiple marathons a year. Whilst my treatment has gone rather okay from a medical point of view - recovery from the SCT has been much harder than I ever imagined. 

    The first month home was actually quite alright, but then GvH hit me bad in my GI-tract. So bad that I ended up in the ICU with sepsis in October. Been on high dose steroids (prednisolone - 175mg) and ruxolitinib and it took 4 months to get off of them. My muscles were completely gone - I was physically unable to hold myself up for 10 minutes until January this year. (My bilirubin also remains high, btw).

    At the moment, physical recovery/stamina/cardio is progressing rapidly. I can now 'run' for 10 minutes uninterrupted or do a 1-2 hour proper walk - but the muscle tightness and joint pain remains. I can't really figure out where it is coming from or if it is correlated to working out or not. I think it actually gets worse if I don't move. 

    So I can't offer you much reassuring stories - except that Ive been having a similar experience. I can't rule out it being GvH, but consultant believes it is just general deconditioning of all muscles, general tissue pain from radiation treatment and some fluid retention from ciclosporin (immunosurpressants) that creates the discomfort. 

    My current mental mode is that I will keep stubbornly working out and getting fitter, assuming that this will make it better - until proven otherwise. 

  • Hi  and welcome to our little group of people who have been in the SCT rollercoaster.

    It sounds like your journey has been eventful but it’s good that you are pushing through, my journey has been full of twists as well but I am now 6.5 years out from my second Allo SCT and doing good (hit my community name to see my story) 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Richard,

    I have to agree with Mike. You have been through a very eventful 7 months since your Allo act with lots of issues but luckily it sounds you are making good progress now able to walk for such a distance and also run. I am appx 20 months post Allo Bmt and I found I was slowly improving up to December when I had a covid jab which I believe set off an immune response which triggered gvhd in gut, liver, mouth and I believe skin. Since then have too been taking prednisolone but my legs seem to tighten more at some times than others and at times can hardly walk due to tightness in thigh which is not consistent with whether I exercise or not so I don’t think it is just muscle reconditioning as doctor says but believe it to be down to gvhd of shin as my symptoms are consistent with gvhd as I have read.  I can feel I have built up muscle but due to tightness I become more unstable and do not have flexibility. I do stretches and these symptoms can come or go one day and be different the next. It can also change partway through day, don’t get me wrong my tightness is always there but comes snd goes in degrees but since I got gvhd in December it has made it very difficult to exercise as much as I did before.

  • Hi Hardtimes, 

    Really frustrating to hear. Every deviation from linear progression feels like a punch in the gut. What I was told is that can be very difficult to officially diagnose GvH. Have you asked your consultant if there is a way they can test it in your case? 

    Hope you can figure out what it is, and how to work with it. 

  • Had a skin biopsy carried out and they found some proteins present and carried out a pinch test on skin and have said I do have sub cutanaeous skin gvhd and would probably benefit from Ruxolitinib to bring gvhd down which hopefully after time would reduce the skin tightness. At the moment they don’t know if Ruxolitinib is available on nhs. Does anyone else know if it is or how successful it is in blocking these proteins that give this skin tightness?