Hi Poseymint & MrsB- Yes I went to dermatologist #3748297492 (??- can't count how many anymore) a couple weeks ago. She prescribed me some lotions I haven't had before, but it's only relieving it temporarily it seems. She said she'll check further with me, if it's not gone within 4 weeks. I guarantee you it won't be gone, I've had it for 3 years, and that is when my thrombos were slightly low the first time, but so slightly that I thought it's nothing until last year. Will mention what you two said to the dermatologist, because she said she has no idea what it is yet.
I have a very stressful job with a less than understanding boss. I work in an elementary school and when i was first diagnosed with ITP, I was coping with the death of a student (due to DIPG) it was a terrible event for the entire community. I started passing out that weekend and thought it was due to stress but it was really due to a low hemoglobin level (4 units). Since then, i have noticed that stressful times result in major lows. In December, my doctor determined that i needed another 4 rounds of rituxan. I am off work because of the risk of illness and noticed that even though we started fostering 4 kids and that caused a lot of stress, my platelets have been ckming up on their own. In fact, any time i am not working, my platelets rebound nicely even before rituxan. Am i crazy? Has anyone else experienced this?
Looking for insight...i am not one to just quit a job...i have worked here for 15 years but on the other hand, no job is worth my health.
I think stress can play a big part, but maybe other factors are involved too, it just is part of the environment where it can occur. I've also had more stressful periods since where I've not been ill, so it's quite confusing...I'm currently measuring HRV each morning using phone app and chest strap, it is a measurement of stress and your level of flight/fight and how balanced your nervous system is, I'm interested to see how sleep, alcohol, exercise etc all effect our 'stress'. I think we can also be stressed without knowing it and some things that seem like fun relaxing things, drinking wine, exercising, parties can put stress on the body.
Can you change the thing that is stressing you? I'm crossing my fingers that you don't need splenectomy or that it works well for you at least. I read a few books about stress and health by Bruce Lipton, Gabor Mate, Bessel v.d. Kolk, Alice Miller etc.- if anybody is interested. But it's not directly related to itp.
I've read Gabor Mate and Bessel v d Kolk, I think it's fascinating stuff, I also think the relationship between number of 'ACEs' (Adverse Childhood Events) and illnesses in adulthood is fascinating, I definitely had a few ACE's and big stresses during my relapses....I've also been in a massively long remission and I wonder if that was after coming out as gay, I wonder if part of me was attacking myself, when I was in a state of not accepting myself. Would love there to be more research on all this as I find the most frustrating thing is not knowing the common factors between relapses. i know other things are involved, but I think sometimes emotional stresses can make us more susceptible to viruses and infections etc.
Hi, how are you? I am new to this group support. I have been dealing with itp for almost 9 years since my daughter was born. My itp was manageable until a month ago. I am a very depressed and anxious individual who can't control her symptoms when I know My platelets are low. I have been in hospital 3 weeks ago because my platelets were only 5,000. I had platelets transfusion and gamaglobulin, sorry if I spelled incorrect. Then I went home with 75,000 after 5 days. However, my platelets got low to the point that I had only 6,000 a few days ago. When I was diagnosed the doctor put me on 20ml of prednisone and that worked fine. I took prednisone in small doses for 5 years until my platelets went down to 23,000. So the doctor prescribed me promacta, the platelets booster. So my platelets went back to normal for 3 years. But now I am in this situation that even thought I am taking promacta, my platelets got lower than ever before. My doctor started me on prednisone 20ml 3 times a day and I have been taking it for 4 days already. My concern is that prednisone can work for me again?? I am very depressed and anxious. I am on medication to treat my depression and take anti-anxiety pills but it doesn't help that much. I am very scared. Can someone advise me please? I feel very alone on this.
So sorry that you are feeling scared and alone. Depression and anxiety are hard in themselves and the unpredictable nature of ITP and the unknown can make it very difficult and scary. Really sorry that you are going through all that. I know I get very anxious when treatments don't work and levels drop.
All I can say is that I've had different times on steroids, the first time they didn't work for me, but a few years later they did. So I guess, it is an unknown what will work for you. I think that is the most frustrating thing about this illness, the unpredictability and the unknowns.
You say that the medication for depression doesn't seem to help much, can you get other support like counselling or a depression support group. Sometimes counselling can really help in feeling less alone, or even just talking to a friend that is a good listener. I do think the emotional side of this illness is neglected by the medical profession, they just deal with counts....
all the best with everything, hope you are feeling better soon
Thank you for your advice. I live with my parents and my daughter. They help around, but when I get a panic attack due to not knowing if my platelets are going to go up or not, they get very stressed up and I feel terrible to put them in that situation. Their hands are tied and I can see in their eyes that they are very frustrated. I lost my job because of this. I am a preschool teacher, my job was very important for me. It kept me going. Now I have to be home waiting to see if ever going to get better. I don't have many friends I can count on.
Be kind to yourself, you're going through a lot. I also find the videos of support groups by UK itp support are helpful in reminding myself that others going through difficulties and they come out other side.... youtu.be/tpA0N66f80E
Also nice to hear others verbalising your thoughts/concerns etc
I can't advise you other than to tell you that you are not alone. My platelet numbers swing wildly for no known reason. When they are low I get very anxious and feel panic. I think that is normal. My heart pounds when I go in for a CBC. The stakes are high. Most people don't experience this kind of thing. It is horror that is inside you. No one should have to go through this.
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