Muscle tightness in legs 10 months after Allo believe gvhd

Ecp

Hi Mike, how is your nerve damage? Are you recovering from it? Are there good changes afoot? I ask this as I also have both thighs with a funny tingling, numbness on the front of thighs and the sensation does seem to change slightly at times. I also feel like I have a stinging / burning which I believe is also some sort of nerve damage but not sure if down to chemo, spinal nerve compression, radiotherapy or lack of leg usage. As I do have feelings there which is changeable I believe this may be repairable, so I was interested to know what nerve damage you suffered or are suffering and where? Also if you are making progress? I believe we can help each other knowing others with similar symptoms and there is a possibility of recovery and possible treatments that may help. I know we have both been through a lot and still have a long way to go.

Remember that I had a very bad time during my second Allo SCT so spent 3 of the 4 weeks in bed with minimal activity so left the unit in a wheelchair and only able to stand and do a few steps supported by my wife so my muscle wastage was massive.

The muscle wastage took about two years to rebuild this required some determination with 4 months of physiotherapy then a further 20 months attending a weekly cancer support circuits class at my local Maggie’s Centre. I was also doing set exercises at home and did get some resistance bands the same as J used at the class

It took about a further year for the nerve damage to go but I will say that there is some pain tends to appear over the winter as I am doing less. At about three years out from my SCT (Oct 2015) I asked for all my pain meds to be removed from my repeat prescription.

Over these first three years I was continually told (my great Specialist Cancer nurse) no pain no gain…… and she was spot on.

I have also lived with Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so this made the recovery more challenging but amazingly I now have no pain…… my SCT said that things like this is actually not unusual.

Hi Mike. Hope you are well. I know and understand you are still recovering. I seen to highly suffer with gvhd and currently taking 25mg prednisone which is down from 60 mg that I was on. This is second time amount it was upped due to spike in gvhd liver symptoms. My face currently looks so bad and bloated and I feel continually fatigued whic leaves me that I cannot exercise to get my muscle strength back up. Unfortunately it gets me down so much as I don’t seem to be making any progress getting my life going in the direction to get it back to normal. Is this similar to what you have been through? If so did things improve? I try to aid my improvement but seem to make no gain. I have been a year now since my Allo and my ability to walk has not really improved in this time my muscles are still weak.

The chai you are facing can be so specific to each individual. I would not say I was very I’ll with my GVHD more uncomfortable due to the skin problems and tiring during the months of blood transfusions.

It took the full two years to say that I was out the other end but those two years had various hospital stays with some bad infections including Pneumonia and Neutropenic Sepsis twice.

The muscle development also took a few years and this took a lot of work…… and pain.

At times it felt impossible but you get there.

Hi all. I still have gvhd skin issues, namely scleroderma on the legs, across the torso and the shoulder. My shoulder tightness of skin appears to be where I had a skin biopsy to determine if I had gvhd of skin. Around torso I believe is a band mri sting from where I had methotrexenate lumbar punctures and I have bands of tightness above and below the knees which is fairly constant and sometimes worse which makes me very peg legged and I lose stability. My legs were very week before transplant due to my secondary cancer on spine leaving me paralysed for a couple of days. It looks like the tightness / scleroderma preys on the week parts of body. Any one else suffered silicate issues or is suffering similar issues. I cannot hardly walk just really 4-5 times a day from lounge to kitchen and 2-3 times from ground floor to 1st floor, other than this I have no energy due to fatigue I suffer. I am now also on Ecp which I am going to every other week for twice a week and am now about to go for 8th week ie session 15 and 26. To date it does not seem to be reducing scleroderma but look like it has reduced my liver enzymes in blood count to nearly normal. Has anyone had any success with Ecp and scleroderma, I am on prendisolone 7.5mg currently.

Hi Hardtimes so sorry to hear about your ongoing issues. My skin GvHD was in the early days (157 to 196) but we managed to control it with playing with my Cyclosporin and various creams.

There have been a few folks in the group been on ECP so let’s look for them to pick up on your post. I have also talked with a few folks at our local Maggie’s Centre Heamatology Support Group who have been in the same-ish position as yourself and ECP has had various levels of success.

Lets look for improvement to come along your way soon ((hugs))

Hi Mike,

do you know if the steroid creams work on the sclerotic skin? I understand that they will work on the gvhd blemished skin but really cannot see how they would penetrate deep enough for the sub dermal layers where the tight skin is. However I may be wrong. Do you anyone that the scleradoma was improved by creams?

I honestly don’t know if it would make any difference to sclerotic skin……. but my type of NHL was actually a rare Skin NHL where the tumours grew in  all’ the layers of my skin eventually presenting as visible surface tumour so I used some very strong steroid creams to help control this so yes the creams penetration into my skin was significant.

I am not in contact with anyone with the same challenges at the moment ((hugs))