HARRISON@ITP

[tip-3]

I was treated for ITP 3 yrs. ago when I came down with sepses; platelets dropped to 2K and I was admitted to hospital for approx. one week; thereafter I thought all was okay even though I was sluggish; achy in the joints; mostly in the knees in the heat; swelling of fingers and stiffness with aches in both hips in the dampness which I was told is osteoarthritis .... and now had a platelet drop to 13K and am currently taking Nplate injection for same ... i researched and read where green veggies; beets; mangos; avocado's; etc. are good as well as recently reading about aloe vera ... I have been taking Vit. C along with others for many years.  I also experienced a faint shakiness in my hands and recently had a nerve go thru my knee ... I am worried and want to get better and since having my injection shot, my platelets went from 13K to 94K and I am feeling blessed and grateful; but do not wish to continue a lifetime process of these and would like to remain healthy on a healthier diet without the sugar; and other processed foods .... any suggestions and/or comments are welcome .....

I also felt dizzy when walking and as I look back on my life, I remember a time when I had all sorts of bruises on my legs and arms for no apparent reason when I was in my 30's; at or around the time I turned 50, I remember waking up and had difficulty with my movement in my legs and thought it was from my new mattress ... I am now 60 and had a serious bout 3 yrs, ago which was triggered by a serious infection; and I am trying to regain my energy and diminish the achiness I have felt in the last 3 yrs.  It was believed I had RA and I was seen by a RA specialist who at the time (3 yrs. ago)  put me on Plaquinel (sp?); and it was a horrible drug ... made the whites of my eyes completely bloodshot and I did not feel that great either ... hence I stopped taking it and stopped seeing the RA as it was not necessary I guess ......

[tip-3]

this is Harrison replying to my comment .... I forgot to mention I had 5 IVIG's during my stay in the hospital 3 yrs. ago which helped with my platelet count; but it was a long process of feeling better; and now I am informed my condition is CHRONIC .... which I thought had gone away .....

[Eileen-Emily]

Hi Harrison I was diagnosed last year at age 69 when I had unexplained bruising I have gone through various treatments IVIG, Steroids etc currently having Romiplostin (nplate) injections fortnightly starting to self inject at home after blood test at the hospital phoning in for result and having advice when to inject and how much.  I am finding this treatment satisfactory but do experience the same as you joint pains and hand tremors perhaps I should also be looking at diet let me know please what you think works! Good Luck 

[tip-3 in reply to Eileen-Emily]

Hi Eileen-Emily ..... I do not believe the steroids are good for one especially long-term use from what I have read and the side effects.  I did not know you could administer the injections yourself .... I have to go into hospital this week again for 3rd shot; but I am grateful to report my platelets went from 13K to 94k and the nurse told me they will check my count this week and slowly ween me down; then next week I will meet with the hematologist ... I am hoping I can come off of these injections.  I was not eating the proper diet and realize now especially as we get older and wiser LOL; I have to avoid all sugar; starch and start eating leafy greens; spinach; kale; broccoli; cauliflower; beets; avocados; mangos; and drink smoothies such as kale; etc.  I now understand it is an autoimmune disease; and I was experiencing a lot of inflammation as well which triggered the pain; discomfort in my body; i.e. knees; feet; hands; shoulders; arms; back which prevented me from doing the things I used to be able to ... I just thought it was an aging process; but not to this extreme .... in the supermarket they have the Goya aisle with all the fruit drinks mentioned above; mix them with orange juice or other and take Vit. C along with Vit. D3 for calcium; also I have read in the spice aisles get turmeric which aids in fighting off a lot of diseases and I believe inflammation ... I put it in my coffee (although I do not think coffee is good for us now on the stomach end .... I will try it with the tea and heat it up ... Ginger root is good also for tea .... I wish you the best of luck; and I am wondering do you experience any pain near your stomach area ?  I have had a few pangs on the left side where the spleen is and am wondering if this is also the stomach gut telling me the same ?  please advise and wishing you a speedy recovery .... 

[Eileen-Emily in reply to tip-3]

Hi Harrison  thank you for the tips especially the part about avoiding sugar and starch.  I will need to speak to both my haematologist and my liver consultant as because I have another autoimmune disease PBC and have been told to eat low fat and get energy from carbs and my haematologist has told me to stop taking any supplements vitamins etc and take only what the hospital prescribes I wouldn't take anything without checking .  However that said fruit and vegetables I am quite sure must be beneficial and as a Scot I admit I am not too good at eating fruits but I will try harder in future .  There is a theory that if you have been on steroids they require to be reduced gradually to permit the body to restart producing adrenaline as when taking steroids the body stops manufacturing . I am currently taking 5mg of steroid reducing by 1mg a month hopefully rid of them by September and hopefully getting rid of some of the aches and pains.  Don't think I can give up my coffee LOL.  Off to hospital tomorrow fingers crossed for a good blood result.

[Milane]

I also have itp for 20 years & discovered that I am also allergic to juniper/cedar trees. Plus, I develop a kneecap arthritis from long term use of prednisone. Suffered from many side effects until I can't take it anymore. I eventually refused to 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 (the lowest mg I can get) on a need basis since according to doc, stress triggers our auto immune. just be careful for signs of suicidal thoughts. doc consider it 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 eat a lot of really green leafy vegetables 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. 

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. just endure the pain of natural delivery. Then prednisone or other treatment will be administered after the delivery depending how low your platelets is. there is a specialist on standby. 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.

[tip-3 in reply to Milane]

Hi cherrieeve:  I do believe stress can play a major role in this autoimmune disease as well as many others ... I was under a lot of stress when diagnosed with this; and I was not eating properly ... actually not at all .. I was only 108 lbs. and finally started eating; but all the wrong foods; candy; cookies; etc.  Now I realize my body needs the proper fuel like you mentioned (veggies and fruits) so I have been taking them faithfully along with my other food and trying to lose all the weight I gained after looking anorexic which I wasn't ... i just didn't feel like eating and my body broke down so to speak ...The Vit. B12 shots or patches sound like a great idea; I am going to ask my hematologist if I can get these.  Year prior I was under the impression I was anemic; but thought it was from not eating ... I did my own research and found out there are iron pills to take (I forget what they have to incl.) 65mg. 3 a day to give one energy as I feel lethargic quite often .... but am going to mention this to the doctor as well ... I wish you the best of luck and hope all can stick to a better diet/nutrition etc.  

[Milane in reply to tip-3]

hi tip-3

Good luck. I am currently suffering from the fruits of long term use of steroids (arthritis) along with itp. Get your blood test done to include iron which is why I feel fatigue & dizzy. I became anemic but I don't know why the b-12 shots is really helping with both my itp, giving me energy, etc. I will have a blood test next week, I'm hoping that my results are good since I feel great. I also avoided the cortisone (another steroid) and I thought it's because of b-12 but doc says no. This week, He contacted a specialized pharmacy to make an inflammatory cream that has no steroid & no side effects or will cause my auto immune to react. I applied it at night & was able to sleep because my knee was not in pain. I used to feel an electric current run through my vein & numbness on my knees. I wish you the best.

[Milane in reply to Milane]

by the way, make sure you eat fruits with vit c to lessen your constipation from iron pills. I try to eat foods with iron or coconut juice (not from can), if you have Asian store, the frozen coconut will work too.