Still battling ITP at 20 years.... and counting....

[Milane]

I have itp for many years & discovered that I am also allergic to juniper/cedar trees after developing hives from head to toe. Plus, I  develop a kneecap arthritis 5 years ago from long term use of prednisone. I would start to faint or lose consciousness when platelets is low at 30 k. Suffered many side effects from medications including strict diet of bland lamb, barley, pear & beets only to remove allergens from my body for  3 months. Result: I got tired eating & learned to curse at the lamb. I eventually refused to eat anymore lamb or take any medication when I almost lost my legs. Changed my doctors & found one that is willing to find ways to manage my itp. I'm doing well, taking doxepin (anti-depression 5-10 mg I can get, makes you drowsy or sleepy so take this at 1 hr before bedtime) on a need basis (once in a blue moon after I discovered b-12) since according to doc, stress triggers our auto immune. just be careful for signs of suicidal thoughts. doc consider ITP as high risk so he gives me early prevention like flu shot, allergy spray like Flonase or doxepin for hives & stress, use of mask since we are susceptible to illness even from someone just having a cold near you, dissenfect surroundings especially at work, etc. this time, I'm developing low iron, vit d deficiency, etc with itp. As doctor suggested, I'm managing these by eating natural foods (avoid blood thinner foods/medicines but also suggested to eat a lot of really green leafy vegetables (taste great, half cooked & crunchy) equal vit k to help with the clotting), early morning sunrise for vit D & the most that help is the vitamin b12 injection shots I get twice or three times a month. I noticed that the b-12 somehow help with the pain from arthritis & provided a boost of energy. it also maintained my itp above 50 k. I just ordered the b12 patch from a company vita science to try this week. the review looks great & many described that it appears to work similar to the injection shots. not a lot recommended the tablets or capsule so don't try it. I am living & enjoying many activities without suffering from side effects. 

For those who are trying to have a baby, previous doc says it's safe but I didn't want to take a chance giving my baby health issues from prednisone. However, during delivery... the doc will not administer epidural if your platelets is low but safe to deliver so long you are over 50 k at the time of delivery. just endure the pain of natural birth. Then prednisone or other treatment will be administered after the delivery depending how low your platelets is. there is a specialist on standby as you deliver so make sure you make it known that you have ITP. the pediatric doc will monitor the baby for platelets too since the baby will temporarily experienced it. I only felt sorry since doc need to poke the baby with needle for blood test. in my case just 3 days while I was at the hospital then a couple of times more after a week or two and baby seems to show no continuous sign of itp. now, he will be 9 years old next week and still no sign of itp. 

Hope this helps.

[Lin6]

Hi thank you for your post, 

I'm from the north of UK, I was diagnosed July last year with ITP.  I asked my haematologist if stress can cause itp he was very indecisive about it. It's good to have it confirmed from someone as I had a lot of stress at work then for no reason I started to have nose bleeds, 27 bruises appeared,blood blisters all over my body and in my mouth. Platelets were only 7, Tho I'm pleased to say after 6 months of heavy prednisone my bloods have settled to 103. My next appt 23rd May I keep everything crossed they haven't dropped.

Hope your feeling better soon and B12 patches work

Kind regards

Lin 

[Milane in reply to Lin6]

thanks. if you are taking prednisone, be aware that it affects your bones. you will need a lot of calcium. eat foods with calcium if possible. make sure you find ways to de-stress. example: do meditation exercises before resorting to anti-depression medication since one of side effects is thoughts of suicide. keep fighting. 

[Lin6 in reply to Milane]

Thank you, I'm now off the prednisone but the depression is still there my doctor said she couldn't give me any medication as they all could lower my platelets. 

So it's a case of trying to keep my mind busy and positive thinking!!!

Thank you again

Lin 

[scaryteacher in reply to Lin6]

Strange, I had Prozac for 3 months, and I have ITP. 

[Lin6 in reply to scaryteacher]

Really!!! Will speak to my doctor. Thank you

Lin

[scaryteacher in reply to Lin6]

I had shingles this year, and the medication advised that a reduced platelet count was a side effect. My doc reckoned it was better to have the medication.

 I don't take meds for ITP as I am asymptomatic for the most part. I've had it for almost 21 years now, and used to teach full time in a secondary school, and deal with my lad whilst my husband was serving abroad. The stress of that didn't make my platelets drop. My count has steadily decreased over the decade since I stopped teaching to move abroad when my husband got further overseas postings, now running at between 29-45, rather than the 80-100 at initial diagnosis.

[Milane in reply to scaryteacher]

I had shingles too during a year of hives from allergic reaction from juniper/cedar trees on top of itp. Specialists tried everything and only prednisone will work for both itp & the hives. I had to go through a biopsy & got lucky that it's not a rare disorder. My doc says that these are symptoms generated by auto immune. inwas told that one of the major causes is stress & I believed the doctor since he didn't even know I was dealing with a new relationship with baggage when I was trying to create a blended family as well as dealing with the nasty ex-wife, my husband's ill mannered family members, etc plus handling a full-time job.  I tried to end my relationship with my husband just to have a peace of mind & time to take care of myself. Each year, I will have new symptoms to deal with itp. This year, I'm dealing with anemia, kneecap arthritis, vit d deficiency & as usual... our fav itp. It's easier ever since doc was giving me a b-12 shots. Although there is no study of its effects to my itp or arthritis, I felt better than the last 18 1/2 years. my knees were in pain yesterday & my primary doc administered the b12 & I don't feel the pain as much. he can't tell me either why it's working for me, I guess my immune system like the b12. instead of cortisone, he prescribed a custom made topical cream from this specialized pharmacy. no complaints on my side, I prefer this than those other meds that we used to take. The orthopedic surgeon was pushing cortisone & he can't answer when I ask him why would he recommend such medication when steroid is what got me in getting the kneecap arthritis.  Planning to change this doc & going back to my primary doc who practices alternative medicine. each patient needs to find what works for them but my goal is find something that will not cause more damage to my organs. I used to say... it's either my auto immune will kill me or the medications.I'm active & no depression. I'm off medications, my platelets is at 60-70 but I still have a monthly blood test & 1 packet of methylprenisolone next to bed (just in case & so far, I have no need for it). glad that you shared your experiences & are doing well. we are learning from each other to try to find what will works. 

[scaryteacher in reply to Milane]

I live in mainland Europe, and the docs aren't interested in treating the ITP until my count is 10 or lower. I moved briefly back to the UK, and the the same there - save the meds until my count is permanently low. As I live perfectly normally (apart from tiredness) with a lowish count, I don't see the need to treat it yet.

I tend not to focus on the count, but how I am feeling. I've felt awful with a count of 65, and great with a count of 19, so go figure.

I have bloods done very six months in hospital, and then if I feel I need one thereafter, I go and see the GP.

[Milane in reply to scaryteacher]

I lived in san francisco usa. If you happen to visit in the area, we can show you around. 

Thank u for the info, i now understand the limitations set forth by doctors. Just pure luck in my part discovering this particular doctor. i will wish you all the best. there is a website i use pdsa.org that may help you. in fact, i will be attending their conference in orlando florida as well meet other attendees with itp. please check out the website in case its helpful.

[Milane in reply to Lin6]

try b12 injection shots, not the supplement.