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Peripheral nueropathy
Hi. I had an Allo Bmt or sct in May 2021. Since December 2021 have suffered with chronic gvhd. I also seem to have what I believe is peripheral nuropathy in my thighs particularly. My thighs seem a sort of numb sensation with tingling a lot of the time but do not really have any pain. It is only my sensory numerous affected. If I put a warm spoon on my thigh or an ice cube I can feel hot or cold, if I use a pin I can feel this as well and my knee reacts if I hit my funnybone. However my thighs seem over sensitive. Does any one know if this is a gvhd symptom or could be or chemo. If anyone has had experience of this did it disappear over time? We’re any treatments used to reduce the nueropathy?
Comments
Hi Dave,
What you describe sounds 1:1 like my ankles. It's new to me too. Last night put a cool pack on ankle and after a while could feel the cold. I have thick layer of flakey dry skin. I suggested to care team it could be neuropathy and she said, yes, it could well be. I have chronic gvhd and skin also now affected.
Last night I didn't put my moisturiser on and I slept better. Cool pack also was positive, but not very.
It gets worse with stress and tiredness.
Best of luck with it.
Helen
Looking more into this, and other people’s experiences it looks like in a lot of cases that this can be temporary and can go with time with recovery but looks like it is one of the last things to go as recovery continues. So it is a case of patience again and for each person this time can be different.
Hi Dave,
That would be great if it's true. Why not. It keeps me optimistic. Thanks.
Best wishes
Helen
Hi DaveT
How's it going with your symptoms? Have you found out if it's neuropathy?
Best
Helen
Hi Helen.
How are you? I hope you are hanging in there as they say. I find it very difficult as progress is either very slow, seems a step backwards or non existent, but remind myself again I have to stay patient. I know it can be difficult when you see gvhd sufferers on the gvhd group who are 6 years out and still with some bad symptoms. We have to remember though we are all different, and have been on different journeys with different issues en route to where we are now. Also we are maybe on different medications and some of these have side effects that can make the body recover longer from them. I believe for me enough medication to. Keep my immune system held back and my body to do the rest, as the body generally knows best. However it is not the same for everyone.
it is always difficult to tell very often if I am improving or not as I often tell myself something has in
proved and days later it often seems worse. However I have been using a revitive medic which is a bit like a tens machine sending electrical pulses up through my feet causing my calf muscles to exercise ie expand and contract, which is keeping my muscles working and keeping blood flowing. This I believe maybe aiding the nueropathy going or if not it is helping the blood flow and keeping the oedema down. Will have to watch this space on this one as time progresses as all these things require time to work. I am also using a vibrating massager now and again on my thighs where I have nueropathy with being also over sensitive and my thighs also seem better after using this, however it has only been a couple days so early days and again I expect this to take time if it is going to work, and hopefully this will break up the tight sbkin. However it will only be my determination and patience that will help me know if I have really been successful or not. I am the sort of person who cannot sit around doing nothing and I need to get out of this predicament I am in, although I realise there is not much I can do other than be patient and wait for the gvhd to subside and hope the Ecp and steroids keep my immune system down in the meantime. I hear you feel like you are getting electric shocks in your ankle? Are they shocks or are they uncontrollable muscle spasms where your ankle / foot jerks? I get these from time to time and I believe they are due to weak muscles and maybe steroids. You should be happy to have these to show you your nerves and muscles are still working and probably recovering.
Hi Dave, yes, uncontrolled muscle Spasms with jerks. But it feels like a little bit of electricity sets them off. It's much worse after, and an hour or two into, the ECP, and the day or two after. It's also noticably worse with stress and tiredness.
When I look at my ankles, the skin looks like it's rotting, the big toe nails are degenerating and the muscle spasms add to a negative feeling about it all. It is the way it is.
Thanks so much for helping and being positive.
I checked out the gvhd facebook group and it's great. Thanks for the tip.
Best
Helen
Hi Helen,
I get spasms similar to yours now and again but I also had them before Ecp, I don’t think you will find Ecp is causing this it Matt just be as you said it is down to when you are tired or stressed. I also have the big toe nail problem in that I have once lost my big toenails and now they are ridged again ready to drop off again. This I believe is down to the strong chemotherapy we had and I also believe down to steroids. However I would mention all your concerns to your team as they are there to help you resolve these concerns. The Ecp should help resolve your skin issues but often progress on the skin front is not until after six months of Ecp treatment has been undertaken, with possible minor changes within a few months. My liver function came down while undergoing Ecp so this was a win for me. The main thing is that your gvhd is not getting worse, it is holding steadying. I am nearly six months and I am hoping soon that my skin tightness starts to reduce as since I have had these gvhd symptoms my life has not been the same and I really want to be mobile again. I know though I need to be patient on whatever treatment I have and Ecp luckily as well is one of the least toxic and leaves your immune system first intact while it is working.
Hi Helen,
I could not sleep as most nights due to this gvhd, it has really mucked up my time clock. I now seem to spend most of the day in bed as it can be difficult to get motivated. The gvhd has really changed my life as I guess it has yours. With recovering from gvhd and it being about a year and a half since transplant we I believe think recovery generally goes one way and you can generally see gradual improvement. However with gvhd it is not the case as it is still fighting cells in the body and things sometimes don’t always go in the direction we want them to. Today was my time for a bad day and I could hardly walk, close to falling over as my knee was hurting so much. Hopefully tomorrow will be slightly better but unfortunately I do not see any days as good days any more. I keep hoping this leg tightness will one day go down, then I N know I will feel more positive and hopefully this will affect me psycolohivally. We all suffer badly from this terrible condition. All I know is we have to be patient with treatment and hopefully our symptoms will lessen. Hopefully we will see gradual progress soon however little it may be, it is still progress in the correct direction.
Thanks Dave,
I just said to hubby , if they'd told me before they hooked me up to the stem cells' "this is going to make you suffer for years, but there's a chance you'll get through it, and there's no other way' " , I would still, even with this terrible endless suffering, have said, yes please, I'll do it.
I'm really grateful for your Infos, find it very helpful and supportive. We're at least not alone. I'm have a rubbish day too. Tomorrow might be just as bad, but it's ok. I'm trying to accept and be compassionate to myself. I can't change it. I'm a fighter.
Best,
Helen
Today, Monday morning I am off for my ECP and often I feel quite tired after it. Let us see how it goes today, and the same tomorrow morning. I think the Ecp has helped keep my gvhd at bay and get my liver function down. As my veins are so bad from the gvhd it is often difficult for the nurses to find a vein and when they do it can also be quite painful, but they have said it is quite common of gvhd sufferers but it tends to get better over time. Unfortunately another patient I sometimes see at the same time as me seems to have flared and his symptoms have got slightly worse so I have to remain thankful I seem to be staying stable.
They find it hard to lay the needle for me too.
Remind me again please Dave, when was your sct? Mine, june 21.
Hi Helen,
My sct was May 21 so a month before you. At least my Ecp has been completed this week. Just got home and shattered. Feel like I have been a pin cushion again. My legs now seem tighter. Just hope it wears off soon as the Ecp is supposed to get rid of the tight skin not make it worse, that is why I am having it in particular. Another patient that I saw while I was there has thier steroids upped to 90mg as symptoms getting worse and now they can’t sleep and they had sct around same time as us.
I just hope you start feeling better soon Dave, me too. I reckon too much info is not always emotionally helpful... the other patient with the increased steroids. None of us know what's round the corner.
It's nice to know we had our sct about the same time, both ecp, both gvhd..... almost enough for a club... LOL. ... I'm with you.
Had Bmt consultant appointment today. Had some goo dish news I guess, my consultant believes I may not have any active gvhd at the moment and possibly the residual effects of my last flare. So he wants to keep me on my current low steroids just to make sure there are no current flare ups and to continue on Ecp and hopefully the tightness in my legs will go down. Will still be very cautious as I know these flare ups can start so easily.
It's nice to get some sort of positive news Dave, thanks for sharing.
Thanks for the info about flare ups coming quick. I'm off steroids now. Have Myfortic and jakavi and valaciclovir or whatever it's called.
Sounds like a good plan for you from your doctor.
Best
Helen
Hi Helen,
it is good to hear you are no longer on steroids as I know how harmful they can be in high or long time doses, I wish I could be off them. Our meds in uk seem a bit more limited than in US or Germany, Jakavi is not available as a primary drug for gvhd as it is used as a primary drug for for a particular cancer and has to be repurposed by drug company for gvhd before it can be used by.nhs and the drug company will not do that as it costs them too much for no monetary gain for them. Anyway when I thought about what consultant said he believes I have no active gvhd it does not really make much difference as it is the damage it leaves behind is what takes the time to resolve.
Hi Dave
Not ethically ok about the jakavi, more about money than health :(. (Just for info.. I pay a fortune every month for my state health insurance here in Germany, but I don't think I'm average case. )
Hope ECP continues to bring you positives.
Helen
At the end of the day I guess the national health service in uk is not free as everyone here pays a national insurance contribution from thier income but it also has to go a long way.
with regard to my nueropathy, I know it will probably take a long time to go. What I have in my feet a sort of numbness I believe is probably nueropathy. What I have in both thighs a tingling, numbness burning sensation I believe it is from gvhd in the epidermis as these seem to be symptoms of nerve damage by gvhd which I am hoping will repair after the gvhd disappears / heals in the skin, however I do realise that this will probably also be a time yet.
hopefully your Ecp will bring about relief to your gvhd and hopefully reduce the nueropathy.
Hi Dave, tingling, numbness, burning, I know all these sensations that you describe. My ankle joints are hard inside too which makes walking hard and nerve damage in the feet too and the skin is broken and hard and thick.
With massaging, lots of moisturiser, at least I get a feeling I'm helping, but I don't think it has any impact really. After an ankle massage it looks like I've spilled a bad of crisps where my skin has fallen off.
Best
Helen
I have been using a revitive medic which is a frisbee sized device I purchased rhrough Amazon. It is not cheap but it is like a tens machine. You sit on a chair put both bare feet on it and put your feet on it. It sends electrical impulses into your calves which causes them to pulsate and exercise lower leg and this makes the device pivot and exercises also around ankles and helps increase blood flow in lower legs. I think this is greatly helping keep movement in my ankles as I have scleradoma and reduce nueropathy. I cannot be 100 % but it feels like it. Still trying to reduce the numbness/tingling/burning in my thighs but I guess just going to see if I can progress this when gvhd goes.
Hi Dave,
keep me posted with the impact of that device. It sounds really good, I'll check it out on amazon but shame it's expensive.
It would be marvellous. I'll ask my team if they've got one I can try out In the clinic.
Helen