harrishill1 I was diagnosed with PV 7 yrs ago
Posted , 5 users are following.
Hi everyone. I just wonder if anyone else has become suddenly allergic to all spices. I have been taking Hydroxyurea for approximately seven yrs now. I think this medication is now interacting with spices. I get canker sores inside the mouth and or blood blisters if I eat any kind of spice including cinnamon. It also seems to affect my stomach. As long as I avoid spices, including the flavors in gum, I am okay. Maybe the fact that I am now 76, has something to do with it? maybe as we age, our body needs bland foods? I seem to be doing okay otherwise, and am happy I thought to eliminate spices. Hope you are all well, and handling your disease. Best wishes, harrishill.
0 likes, 7 replies
PO32_6AP harrishill1
Posted
justin23294 harrishill1
Posted
Hi Harrichill. I was diagnosed with Primary Thrumbosthimia and JAK-2 mutating jean about 4 years ago. I have been on Hydroxyurea (16), 500mg capsules per week. My platelets are now in normal range. So far ,no noticeable side effects. Except I lost my food taste for over year now. My hemothalogist tells me ,it's not from the Hydroxyurea. It's probably from a fall that I had that caused head trauma. I've done extensive tests with many doctors in this field. University of Pennsylvania. (food and taste clinic )Tried steroids, antioxidants ,zinc tablets and nothing helped. It's been a living hell for me and my wife. I'm 82 now and feel pretty good physically. My Doctors tell me that, at my age, probably I'll never get my taste buds back. It's a bummer! I guess I have to live with it for the few years the I have left.
PS .In your case ,I would just avoid spices.
Best wishes, Justin.
angela_o..o harrishill1
Posted
I’m not taking any medication apart from aspirin so my experience is a little different from yours but I have noticed some changes in my tastebuds’ reaction to things.
I used to be a very keen curry eater. The hotter the better. Vindaloo - lovely. I also enjoyed Mexican food and Sichuan Chinese dishes which are very hot.
Since being diagnosed I have found that my ability to eat anything containing chilis has sunk to almost zero. No idea why. Maybe the blood vessels have become distended or brought nearer to the surface of the skin.
Sorry that you are so badly affected.
.
peter98873 harrishill1
Posted
Sorry to hear you are suffering side-effects. One would not rule out the effect of spices on PV etc. but I do know that I received a number of painful mouth ulcers from the Hydroxy treatment after a number of years with this drug. I also had other unsettling effects which have now been eliminated with the Ruxolitinib. The ulcers were kept at bay by using Difflam Oral Rinse prescribed in UK by my Haematologist. (benzydamine hydrochloride).
Peter.
harrishill1 peter98873
Posted
Yes, angela and Peter. Thanks for your replies. I used sore mouth medicine. It helped. but not eating spices did the trick, I also have to be careful not to eat too many tomatoes, or too much of any acidy fruits. But I have always had to avoid these foods to extreme even before being diagnosed. I always used to eat spices without any problem though. But it is interesting that Peter said he too had mouth ulcers when on Hydroxy. I think many of us will have a similar problem when on a fairly dose of Hydroxy. If it gives me any more serious side effects I will report it to my hematologist. I've noticed I am the only who spells hematologist without an A. The reason is that I looked it up and it can be spelled both ways. Anyway, nice talking to you all. harrishill
peter98873 harrishill1
Posted
I can only but agree with your comment about mouth ulcers when taking larger doses of Hydroxy.
As my situation worsened so did the mouth ulcers increase. I found the mouthwash very effective. If you are slowly needing to increase your dosage of Hydroxy then do keep an eye on your symptoms as this eventually led to some very uncomfortable times with me and ultimately the need to be taken off this drug and my current use of Ruxolitinib. This has transformed my situation but I know others have found it less welcoming but it does take time to acclimatise to the change. Most find Jakavi a great improvement over Hydroxy. Cost is big factor. Keep well.
Peter.
peter98873 harrishill1
Posted
Hello harrishill,
Your comments about the spellings of haematology are not unusual by any means. The word has evolved from its Latin/Greek originations where the letter 'a' was used to give a characteristic pronunciation to the word. Without this letter it shows that it is used mainly in US and one or two other countries in that area where it forms part of their vocabulary, which is becoming phonetically based.
Another such instance is the word colour which in US loses its letter 'u' There are many others. Good wishes.
Peter.