Bone marrow biopsy every three months

Thanks guys for telling me all this it can be really hard explaining to people in a way they can understand or can be uncomfortable 

Hi. My gvhd now is mainly skin. My skin has become really tight around my knees above and below, around my waist, tight skin and like hard lumps under belly, tight skin on one shoulder where skin biopsy taken. Had mouth gvhd and stopped producing saliva for a while which gave me ulcers in mouth. Took steroids prendisolone and steroid mouthwash and luckily after a few months I started producing saliva again and gradually cleared up my mouth gvhd. Some people continue with it for years. Also my throat swelled up and I could not swallow anything, had really big issue swallowing big pills. Luckily steroids helped bring this down as well after a few months. I expect the other drugs are not steroids as generally you only take one prendisolone, your partner is either taking other immunosuppressants or meds against viral diseases, shingles, penicillin, possibly acyclovir, maybe posaconazole or co-trimoxasol. I hope it does not get too many flare ups as symptoms can get worse if your partner catches a cold or has an inoculation. 

Mike,

can I ask. Did your appetite go when you had gvhd? Did it ever come back? To the extent you ever feel hungry? I am 2 years out and I often have no desire for food or drink.

He's on betamephasone too, his mouth is covered in sores and ulcers and cracked and he's lost about 5kgs since it started to happen

he was on eumovate and hydroclorizole for his face but they're trying to see if it'll go away without any more steroids so now it just looks purple around his nose and mouth... 

Yes still on penicillin, cyclosporine and the other milkshake of antibiotics too... I don't think they're thinking of innoculating yet.. something else to look forward to...

Hi. After my sct my weight was really low and I was losing more weight as I left. I had a feeding tube in hospital but it moved against my throat causing me to throw up. When I started steroids I are more as this is a side effect of steroids even though my appetite has not returned yet. After I stopped my initial immunosuppressant cyclosporine I was told I should be ok for some of my jabs. So I scheduled my first covid and flu jab together and the immune response from this started my chronic gvhd flare so in some ways I wish I held off. However the other way to look at it is if I hadd had later it may have flared later so you cannot win with best time to take jabs. A little while ago I forgot to mention my eyes started to get tired, blurry, crusty which is gvhd of eyes which seems to occur later on. I believe the gvhd had also arrested my muscles as my mobility and range of motion in my legs is really bad, so currently waiting blood test results to come back for this. For gvhd the drugs used to try and reduce gvhd can be a bit hit and miss. What works for one person may not work for another so it is a long haul.

It's so hard, you think the stem cell transplant is going to be the end and then some recovery - I'm not really sure you could call this recovery... I hope you get help with your symptoms it sounds really tough! 

Thankyou. I think the gvhd is worse than the stem cell transplant. I currently have Ecp and taking a course of Rituximab hoping that may improve my issues. However cannot guarantee these will help. Sometimes I think just time resolves These issues. I hope your partner also recovers quickly from his issues. 

My appetite problems were initially for the first 4 months after my second SCT….. I basically lived on regular small cups of good homemade liquidised soup with lots of double cream. Then it took a long time….. say a good 18 months to slowly build up my appetite not because of the GvHD but because of the massive Hiatus Hernia that developed when I was very sick after getting my stem cells so it took time to get the meds correct to control the stomach challenges but everything is fine now….. the Hiatus Hernia actually envelopes my stomach so it can’t be touched

Hi Mike,

Thanks for getting back and your reply. Did you ever get eye gvhd?

No GvHD to my eyes…… as you see the SCT journey is full of obstacles that have to be navigated…… the body, both physically and mentally is put through a lot pre, during and post SCT…… but it’s the price we pay for life…. although some find that their life changes to accommodate the SCT ‘left over’ medical issues…… but for me, my clinical team set my countdown in late 2013 with 2 to 2.5 years on it and the only thing that would pause it was SCT….. I am a good 6-7 years past the point and doing great…… the most encouraging thing is that over the past 5-6 years some new treatments for my type of NHL have been developed so if my condition wakes up I have options.