Day +97 Skin GVHD

Great news Sumo……

At day + 98 my first Chimerism was 39% Donor…… it took until day + 644 for my Whole Blood Lymphoid and Myeloid Lineages to be 100% Donor.

My SCT Consultant told me that going through the SCT process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months to this point in time….. and this was all done without any training.

Think about doing the London Marathon and boxing Mike Tyson everyday, without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality.

Not giving yourself enough time could be a significant backward step.

Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.….. at 3-4 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks….. and I had significant aches and pains over the first few years.

I’m now Day +163 post SCT for my T cell lymphoma. Skin and skin GVHD appears to be controlled but still have a very dry mouth.

As I started to taper steroids I have developed stomach/gut issues. The team did warn of the risks of too fast a taper as I’ve been on Prednisone for a few months now.

its a bloated full feeling that is sometimes crappy but more just a feeling of uncomfortableness or a dull ache from abdominal distension. It’s been going on for over a week now. The team don’t seem too concerned as I don’t have constipation/diarrhoea. Trying gaviscon etc but doesn’t seem to help as the pain usually comes on in the night no matter what. Wondering if the lymphoma may be brewing up again? 

Anyone else suffer with stomach issues post transplant or during steroid withdrawal? 

Hi Sumo and Happy New Year to you and let’s look for 2026 to be a year of consolidation where your new immune system takes full control and deals with the post SCT left overs.

Good to hear that your skin GVHD is calming down.

As your drugs are slowly reduced and your immune system is kicking in there will unfortunately be interactions……. I had significant stomach issues for a good year post SCT…… although this was made more challenging as when I was severely sick following getting my cells……. A subsequent CT showed I had developed a massive Hiatus Hernia…… it’s so big that it actually fully encloses around my stomach and pancreas gland……. but I am very thankful that I don’t have any problems with it and only need some Lansoprazole to control the lining of the stomach. If the HH becomes a problem then it will be a challenge what to do!!!!!!

Are you on any PPI’s (Proton Pump Inhibitors) ?……. I have been in Lansoprazole since my Allo SCT back in Oct 2015. 

Thank you and let’s indeed hope for a healthy and happy 2026. 

I am on Lansoprazole and have been since starting steroids. I’ve had flares of gastritis before so know it’s a common side effect. I know how an addict must feel trying to wean off these steroids!! 

Have my weekly appointment tomorrow so will see what they say. 

Thanks

In the early days I was taking the Lansoprazole wrongly…… as in taking it with all my other meds with or after food.

After talking with a Pharmacist friend she pointed out that I should be taking the Lansoprazole Capsules 2 hours before or after food with a pint of water…… I found that this made a big difference. 

A few years ago I was getting severe abdominal pain. A hospital doctor diagnosed my as having acid reflux and prescibed Lansoprazole which I took for 2 years without any relief from the pain. It turned out to be a blocked gall bladder. Once my gall bladder was removed I had no more problems.

I recently read this article which says that 'that taking lansoprazole for more than three months can reduce magnesium levels in the blood. Low magnesium may cause fatigue, confusion, dizziness, muscle twitches, shakiness, and irregular heartbeats' and 'using lansoprazole for more than a year may raise the risk of side effects such as bone fractures, gut infections, and vitamin B12 deficiency. Symptoms of B12 deficiency include extreme fatigue, a sore or red tongue, mouth ulcers, and pins-and-needles sensations'.

Hopefully your doctor is aware of this and monitoring you for side effects.

www.healthandme.com/.../are-you-taking-lansoprazole-regularly-nhs-warns-of-possible-health-risks-article-153365782

That’s really helpful thank you. I did wonder about magnesium levels. Will chat it all through tomorrow with the doctor.