I have had a continually recurring undernail infection in big toe for 8 weeks now and, finished 2nd round of antibiotics only to develop cellulitis on ankle of same foot. Cellulitis is responding to anti biotic (thank god) although undernail infection is back at the same time.
Gp wants podiatry to take over for nail infection. Assessment to happen soon- treatment in 6/8 weeks maybe?
Hospital A&E diagnosed cellulitis. 2 days ago prescribed fluxocillin 4x500mg daily 1week course.
I now have had 3 different teams dealing with this round of infections- how do I make sure this is all effective and is there anything I need to watch out for. Feeling pretty green.
I have ET and take 500/1000mg hydroxycarbamide alt/daily. Also aspirin 75. Current platelet counts hover at 350-450 but, red cells are down to approx 3.1
47yrs old, active 74kg. Male.
Written by
WoodcutterET
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Sounds entirely yuk! Poor you. Possibly worth a chat with your haem team? They may be able to offer a more holistic and targeted approach and / or a change of meds for the ET. And I know there are others on this site who have had similar tales to tell. I’m sure people will post. Hope you’re on the mend very soon.
The symptoms you are describing might be a side effect of the HU. Certainly something to discuss with your hematologist about. If you are experiencing HU toxicity, then there are alternatives and options.
I’ve always found it hard to decifer between ET symptoms and hydroxy side effects or toxicity. It may be co incidental that 6-8 weeks after starting hydroxy first nail bed infection occurred followed by symmetrical Achilles’ tendon ruptured but, no one else seemed concerned.
Have you had experience of toxicity or, adverse side effects?
Yes. I am HU-intolerant in that I experienced toxicity even at low doses. I developed mouth ulcers and thrush. Ultimately this turned in to what appeared to be leukoplakia. The solid white coating on my tongue diminished after I discontinued, but some discoloration is still evident after 8 months off the HU. The HU also comprised my intestinal endothelium - causing constipation. The effect has diminished, but not completely resolved.
In what may or may not be related, I developed a serious vitamin B/Folate deficiency. My PCP wonders whether the compromise to the intestinal endothelium has reduced the ability to absorb nutrients. I guess it is theoretically possible, but there is no evidence I have seen that this would be the case. Certainly could be totally HU-unrelated.
Hopefully it will all get better with time. If not, it is just something to live with and keep on trucking!
About 9 or 10 years ago I had nail bed infections one after the other. They were extremely painful; my GP and my haematology team were all really sympathetic but could offer no help except repeated courses of antibiotics, which didn't help. I was also getting swollen ankles and feet, which obviously didn't help as it pulled at the skin around my nails. In desperation, I read a book on what might cause fluid retention and tried cutting out wheat. Within two weeks, the infections started to clear up and my feet shrank to normal size. I'm not coeliac or anything (I can eat some wheat with no ill effects) but that was my (miraculous) experience. I was also on Hydroxycarbamide at the time for ET. I'm now on Pegasys and coincidentally have just finished a successful course of antibiotics for cellulitis. I wouldn't offer medical advice but it might be worth looking at changing something you are eating (even if it seems faddish). Good luck.
I totally agree about foods creating symptoms. Haven’t drunk milk for 20yrs. or had cooked dairy. I’ve heard lots about “anti inflammatory “ diets and it seems like almost everything is inflammatory if you don’t tolerate it. All the available info can be highly contradictory and I feel lost even starting to sort through info.
Coffee and sugar are my weakness and I’m not sure if focussing on these would give any change to the situation but I’d happily try if there was indication it might help.
Think the red cell issue and meds may be more to blame.
Circulation and general physique is good (5’11”, 74kg, full time active job) even though activity levels have suffered from these infections and “symptom”flare ups.
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Aspirin dose for ET update.
recurrent infections
Very bad headache when I wake up!
Sorry it has been a while with an update on Ruxolitinib
