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 Hardtimes 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 Thehighlander 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.
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
Hi Richard1 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)
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.
