Muscle tightness in legs 10 months after Allo believe gvhd

It must be frustrating to know its definitely GvH, but at the same time hopefully it helps to at least know what causes it. 

For my GvH, while my gut was so severely infected by GvH that I ended up in ITU, my skin was also a mess with a lot of rough patches. After starting steroids and ruxolitinib at the same time, it solved all of it within 24 hours. My consultant is convinced it was the Ruxolitinib, more than the steroids or ciclosporin that suppressed the GvH.

I experienced no noteworthy side effects from Ruxolitinib (although it probably lowered bloodcounts a little bit), in case you might wonder.

Hope they can get it approved for you!

Hi Richard,

many thanks for your reply it does give me some hope which is what I need as I cannot seem to make much other progress. I do feel however that going upstairs a few times a day and little walking around with difficulty my muscles are strengthening slightly even though my movement is limited by gvhd. I also have lots of gi gvh affecting my stomach a lot and reducing throat diameter making it difficult o swallow pills as mot get stuck. However prednisone steroids have improved throat and gut a little it has had no effect on skin. I forgot to mention as part of skin gvhd I have a purple skin rash around trunk and top farms and what looks like bruising on inside org my arms. I was given a steroid cream for rash but has had no real effect.  I am adding all this here as it may help others reading this thread or for others to update if they have similar symptoms.

Can I ask how long your gvh lasted in total and how long after a Bmt did it cease the gvh? Also did the gvh symptoms become less as you came out of gvh?

I think GvH started quite rapidly after my BMT/SCT (probably within 4 weeks after SCT). It escalated pretty rapidly and I was on ITU within 2 months after my SCT with severe dehydration and sepsis due to gut problems. We started steroids at first - which controlled the sepsis but the gut problems remained. A week later we started adding Ruxolitinib, and it got much better within 24 hours. Little symptoms remained for 2 days and the doctor upped the ruxolitinib dose and everything went away.

Then we slowly reduced ruxolitinib (and steroids)over 3-4 months and I've been fine since. Still on ciclosporin though, slowly reducing that still. Hope that answers your question - let me know if I misinterpreted / can share more!

Just dropping in past with my GVHD experience following my second Allo SCT.

My skin GvHD kicked off on Day 85 so my Cyclosporin was continued and slowly reduced, my skin was clear by day 157 with my Cyclosporin stopped on Day 196.

On Day 284 (10 months post SCT) I developed  GvHD in my bone marrow so I was having Blood transfusions and platelets every week for three months….. then everything came ok.

Hi Mike, I thank you for this reply. I am more or less a year after transplant and my main gvh seemed to start around end December ie  6 months after Allo transplant. Went on steroids and gvh lowered for a while, then month ago appx it flared up again so increased from 5mg daily back to 60 mg daily. Liver gvh is now on way back down again and gut gv and throat gv reducing agai but skin gvh not reducing with steroids. Just hope these other drugs work if available still on nhs. Gvh seems to be lasting a long time with me, however I do realise you went through it twice but your last ordeal seems shorter than what I am going through. I don’t know if I also mentioned I seem to get these sort of heat surges across my body which I guess some people refer to as a sort of burning. Did you ever get this with your skin gvh and did it go away eventually if you got this symptom? Also did you get purple rash on trunk and did that also take time to go? Your answers appreciated. 

Good morning Hardtimes.

Heat surges?….. not sure if it’s the same but my bodies internal thermostat was very erratic so I had various times of extreme body heat then cold especially in my upper body.

No sweating just very hot or cold and it went as fast as it came. It did last longer then my skin GvHD….. I would say on and off for a good 16 months although it was something I got used to happening so can’t put a clear time on this.

I have a rare skin NHL (I am told that SCT has not cured it) so I had various other rashes that were not GvHD and my skin was discoloured and very easily bruised,

There have been a few folks come through this group and on another support platform I am on who have had (ECP) extracorporeal photopheresis light therapy for their skin GvHD. It’s not available at my local hospital and as I was a 8 hr round trip away from my SCT Unit we pushed through with the creams and steroids but we’re looking at me going back to Glasgow to have ECP.

Light treatment (ECP)

Hi Mike. Thanks for the update. How did you find the eco? Did you notice any improvements? I am today in hospital having my 12 month post transplant bone marrow biopsy, I never look forward to this. Also told today that roxanilib is no longer funded by government just on individual basis so have to wait some weeks for a decision. It was funded during covid as was one of those emergency treatments against covid but has now been withdrawn. So while I await to see if I will get funded they are seeing if they can get me on eco. Also cutting my steroids down now from 30mg to 25mg as been on steroids now for a while and face now bloated and nails going brittle to name a few side effects. So the fight carries on. 

If you mean ECP when you put ECO I did not require it as my skin cleared up. The folks I have talked with who had it found it ok - blood out - blood goes through a clever machine - blood back in. Normally done over a session a day for  2-3 days and a quick-ish difference made.

Sorry mis type did mean eco. Just have to wait for availability and hope makes a difference, even the smallest.