Thought I would register myself with the ITP Support Association and tell my story here.
I am a 48 year old male who was up until the 4th October this year a fit healthy person with no idea that ITP was even possible.
I finished work at 11pm on the 3rd October and then went to bed. At 2am I woke up and felt like I had bitten the inside of my mouth as there was a black blister that had just appeared from nowhere. I thought no more of it and went back to bed.
The following day I found more blisters and the small purple spots that had started to show around my waistline.
Having been in the gym ( I still do weight training at a quite intense level - Or at least I did ) and just thought that I had overdone it the night before.
As the day went on I started to get a few bruises and my wife said she was not happy and sent me off to the doctors, who did not seem at all concerned and sent me home and told me to call back the following day for a blood test.
Following the blood tests I was rung by the out of hours Bardoc and told to pack a bag and get to A&E as my platelet count was at 1 ( and had been I suspect for a couple of days at this point ).
To say I was scared was an understatement and so off we went.
At the hospital I was given a platelet infusion and put on the Pred which did nothing overnight.
Thursday I was given my first IVIG and my count went to 11 and then on the Friday I was transfered to Oldham hospital.
Saturday I dropped back down to 3 and so I was given a second IVIG on the Saturday.
Sunday the count went to 25 and then on the Monday 45 when I was allowed home.
I was kept on the Pred at a dose of 90mg which they have started to reduce.
After a couple of weeks my count was at 195, however I have dropped to 50mg and last friday, although still OK my count has dropped to 149.
To use the word roller coaster as I have read on here is a good way of describing it as no one at work can believe what has happened as I look from the outside so well, although in the hospital my wife said I looked like an extra from the walking dead!!!
Not sure what will happen as it seems we will have to take each week as it comes and hope that they find a way to stabilise the count as the job I do I will not be able to continue with this condition.
I eat healthy, train well and can never even remember the last time I had a cold.
Thanks for reading and I look forward to sharing many "happy " stories of my progress with you all.
Take care everyone
Steve
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Steve5563
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Welcome to the Club. Your story is not that different to many of us here and very similar to mine. I too was fit and healthy when I was diagnosed at age 54 (Feb 2014) and had never heard of ITP until I was diagnosed. I don't want to put a dampener on your situation but I had the same initial response to Prednisone for the first 3 weeks before plummeting down again and then going on the long road to remission using 6 different treatments before the 7th finally worked. Whilst my ITP was very severe, I consider myself lucky because I only suffered with it for 9 months and achieved complete remission whereas many people here battle this illness for a much longer time.
You may be lucky and the prednisone and IVIG may work for you but don't be discouraged if the early results are not maintained and your recovery takes an extended period of time.
Keep us informed of your progress and I will try and pass on my experiences on both treatments and any side effects that I had.
I am currently a serving police officer and I pretty much know that I won't be back on the front line ever again, although I only have 5 years left to work so a desk job may not be the worst that could happen.
What are your levels at now, as I have been reading that the numbers are not really important, it's whether we bleed / bruise that matters??
Not back for another test until the 21st when I will only be on 40mg so that reading may be quite important as a guide to how I am doing I suppose
It is probably too early to assume that you will not be back on the front line again as, once they get your counts to a reasonable level, you can continue life as normal. You just have to give your doctors time to determine which treatment works best for you, the dosage required to maintain a safe level and then you just get into a routine. You might even be fortunate and your ITP just goes away which is what happened to me. I had been down as low as 0 and as high as 1100 on NPlate injections when suddenly in the space of one week I went from losing 150 every week to maintaining a count of over 200 without any medications at all.
It has now been 3 years (last week) since my ITP went away and to this day I have no idea why it started and no idea why it went away.
I have a lot of respect for the police so I hope that you get on top of your ITP and are able to continue with your career.
When I checked my last official blood result in 2015 I was at 185 so I have never been really high, although that is well within the "normal range".
Yeah when you read about the Acute way that my symptoms came on I just hope it stabilises quickly, but I will just sit back, enjoy the time off work and what will be will be.
Speak to you soon when I get the next result on the 21st
Hi. I have been diagnosed about 18 months now with ITP I hope your count stays at that level mine averages around 40 to date I have not had any medication I am just being monitored I read on this site that somebody was taking black seed oil so I tried that and agree 3 weeks had a blood test done last Friday it was 90 so I don’t know if that helped or not yet. I live in Thailand for 6 weeks then 6 weeks in UK alternately. I am in Thailand at the moment so have a blood test every week or 2 to monitor my blood so I get a good idea of where I am. The doctor here said to try Coenzyme Q10 100 mg 1 tablet a day. I have been taking these for 7 days now I will update when I have another blood test good luck all
Hi Steve. No it has not stopped me at all I do get tired and sleep in the afternoon sometimes but I don’t have a great sleep pattern as I travel to and from Thailand every 6 weeks and it is 7 hours time difference. Once I got used to having the tag of ITP and got past being frightened of having something bad I decided I would just get on with it and live my life which I am doing. I don’t bleed I only bruise badly so I’m lucky if I get any comments about the bruises I just laugh and say my husband did it then explain I’m joking. So you just have to live a normal happy life and only worry if you really get affected by ITP. Luckily I haven’t so i ignore it as much as possible. Positive mental attitude is a great way of thinking good luck xx
Welcome to the ITP club! It's very scary and exhausting at first.
You will find that your haematologists will keep trying different drugs until they find the one that works. Most of them act by suppressing your immune system to reduce the number of platelets it destroys. IVIG is an infusion that is a rescue remedy raising your platelets if they get dangerously low, but only temporarily. There are also a couple of drugs that work by stimulating your bone marrow to produce more platelets (one of these has worked for me).
A few people go into spontaneous remission and need no treatment. Don't worry if your count is not in the hundreds. Even counts around 30-50 are considered safe.
If you feel its taking a long time to find a solution don't be afraid to ask to be referred to a hospital with a specialist ITP clinic. There is one at Manchester Royal Infirmary for example.
Finally, stay in touch with people on the forum. It gives great support and encouragement when things feel a bit shaky.
Hi steve, welcome to the group. I’m so sorry ITP has claimed yet another. It is the strangest disorder isn’t it. I’ve had it myself for 6 months and I am now on no treatment because nothing worked so I am going Day by day. I live with a constant as it is said roller coaster ride of counts. I am now at a count of 26 and in a way I with they would give me a platelet infusion but I have no symptoms except the occasional nose bleed. It’s a crazy ride but you will be ok. Research for yourself and keep current on different things while the docs figure things out. Take care
Thanks for your reply and yes I agree it is the strangest of conditions, one that I had never heard of or even thought was possible!!!
I can't believe after 6 months and a count of around 26 that you are not still continuing with "something" as that number would scare me from even walking about, let alone living day to day.
I know the splenectomy is not recommended but is that just it for you, or was it your choice?
I have read that the N plate seems to be the only drug that seems to work when all others have failed. Have you not even been given that as 6 months doesn't seem long to have tried them all.
I have been on the Pred for almost 5 weeks and still on 50mg.......
I was given ivig in the hospital and it failed then they tried prednisone and after 4 months they considered it a fail because it only ever came up to 30. My dr has tried 8 hematologist but none would take my case because I have virtually no symptoms. She finally got one to just talk to me on dec 5 and then he will direct her as what to do. He won’t see me again though. I went back to full time in aug but I am very tired at the end of the day. I have been making a list of other meds he might let me try and I will check to see if my Ned insurance will cover it.
There isn’t much else I can do but wait because my dr doesn’t know what else to do
Nplate isn’t For everyone. I had a severe analyphtic allergic reaction that landed me In The hospital for a week. I nearly died from an oncologist who didn’t bother to see that people with chronic liver disease shouldn’t take that injection . It is a very traumatic situation I endured. My brother told me to “write a new chapte” in my life so I try to say be your own advocate. I would say more and maybe will later. My numbers dropped back down to 38 and dropped from 60. They are investigating my bone marrow. My spleen is causing intense pain which is why I am up at 2:30 am writing this. I rubbed peppermint essential oil and coconut oil and it really helps with pain. I am learning about oils. I wonder if there was more research and have read that medical marijuana helps itp. Just some personal thoughts. Steroids and nplate worked temporarily and got my platlets up to 119 but caused my bp to go to 219/166 and caused a mini stroke. Weigh pros and cons. Take care.
Hi. My husband had this about 5 years ago - again not idea at the time what itp was. He collapsed at work and that triggered tests etc and revealed itp. He was late 30’s fit and well. Never went on meds although came close but refused and was also mentioned cud get spleen out. We tried everything and focussed on diet. There was a lot of reading to support gut health and impact on immune system. After 2 years of itp and endless appoints he went on a gluten free diet. At the next 6 month check up his platelet level had risen significantly. He continued on diet and made sure no rubbish foods - basically all natural foods veg etc no processed and no gluten. In around a year his levels levelled out to norm. 3 years have passed and all good. You may want to look into.
Hi there, interesting to hear, that your husbands platelet count increased,by not having gluten in his diet. I no that its good to avoid bread. Could you briefly tell me what else he cut out of his diet. My platelets are very low and sit between 3 and 7. I get very tired, but take iron,which helps a bit. I am going to take fresh Papaya as this helps the immune system. Regards Jan
Its basically cutting all gluten out of your diet. It can seem quiet daunting to start but if you clear your cupboards of all foods containing gluten and then as you shop read all the ingredients on packages. It takes a little time at the start but like anything once you start its easy. There's a lot of sneaky gluten in products, for instance ready made mustard has wheat flour, but if you buy the powder to make yourself its ok. Although you may not be coeliac have a look at their website - they have some good lists to print out to get you started on what you can / can't have. Our reading suggested that immune system is impacted by gut health so ridding foods which cause inflammation and possible leaky gut all sounded like the way to go. We even did the SCD diet - if you look into you will find some good stuff - we followed for 3 months intensive programme. No looking back - except he can't have a beer (only gluten free beer, but there are some good ones on market now so all is not lost). Basically - cut the gluten (there's plenty of websites to tell you what has gluten, i.e. coeliac site. Cut the processed food and reduce the sugar. Start thinking proper foods such as veg, fruit and butter - yes butter - forget all the processed margarine and low fat yogurts pumped with colourings, sugar or sweetners. Good luck
Thanks for your reply,like you have stated! Its surprising how much wheat is in so many foods. I have made a start not having bread,although Rye bread has the least gluten. Have also been having fresh Papaya fruit,as this is thought to help. Will try to cut out as much as I can and see if this helps. Regards Jan
After a very bad platelltes down to 1,000 -5,000 and every 2 weeks IVIG from diagnosis in May 2017 to Oct 2017, I too went gluten free and low dairy and sugar and high kale 6 months ago and have had stable counts 180,000 and above. Also taking immuomodulating homeopathics. Fingers crossed.
I've been hovering between 30-60 for the last few months. I don't take medication unless I'm below 10 and have serious bleeding.
After my initial diagnosis, like you, I stopped all exercise (my mental and physical health lifeline) until I realised it was worse for me to do nothing.
Now I still cycle in London to work even as low as 20. But carefully! I do circuits, Pilates and swimming. If you want to and you feel energetic - get to that gym!
I've learned that I'm not ill, I just have a higher risk of bleeding at certain times. For me it is a situation of increased risk.
Although I do get incredibly fatigued. But the best cure for that is sleep and rest (which will also be good for your pumped up muscles!).
It has taken me the whole seven months since diagnosis to get out of my panic about ITP - and sometimes it still makes me feel angry at being so tired.
But please don't let ITP stop you doing what you want in life, especially stuff that makes you feel good and is good for you - you might need to modify (get a REALLY GOOD spotter on those bench presses!!) to make sure you aren't at risk from injury, particularly head injury; but when you feel up to it, just get out there and live.
It would be good to hear how you are doing. Good luck, my next test is a couple of weeks, the last one was good. I had 2 platelet transfusions, had an op. For another problem and my blood count was good. Doctors don’t know why.
I like you was health until I started bleeding on September 18,2017. Went to ER and guess I hopped on this roller coaster 😒 I spent 39 days in the hospital before they finally got my count to hold @ 10 for 2 day. Finally I could go home to my children. I now receive platelet transfusions twice a week. Keep positive is the only advice I can give.. I tell myself to be thankful for every day when I wake up,no matter how bad I may be feeling.
I've had ITP for 22 years now, and no regular meds. I've had pred twice in that time for specific things like a GA. Current thinking seems to be no treatment unless my count is below 10 and I am in a bloody heap on the floor.
I get tired and bruised at times, but still seem to function normally.
Went for my six monthly bloods yesterday, and my count was 52, which is better, as it's been bumping around 36 for the past two years, but I do have a cold, which always makes them rise for some reason .
Best advice I can give is to keep calm and carry on. We all could have something worse. It's just the initial challenge of getting your head round this.
As promised I said that I would update my results after visiting the hospital this morning.
I have been reducing the steroids and am down to 40mg.
My levels were 203 today from 145 2 weeks ago when I was on 60mg.......don't know how or why and the consultant can't say why either, which doesn't really help!!!
To be honest I have not been eating that well over the last 6 or so weeks and so don't think I can put it down to that, and other than being off work so no stress I have no other explanation.
We are dropping the steroids again to 35mg for a week and then 30mg and back for bloods in 2 weeks.
I know readings can change from day to day, but I am pleased that they have actually gone up with a reduction in steroids and feel quite bad posting these numbers after hearing of others.
Mind you in 2 weeks I could be back down low again......who knows
Reduced the steroids over the last 2 weeks from 40mg to 30mg and had bloods done yesterday.
They have again raised slightly from 203 to 219 so looks like I am still responding to the drugs.
Still not sure if I should stay excited as I am still waiting for the drop to happen.
Dropping to 25mg and then 20mg for the next 2 weeks and then things slow down even more apparently and doctor said that it would be March / April next year before I am completely off them!!!!!!!!
Got to say I am not loving the Pred as I am just replacing years of hard work in the gym for what is starting to look like a beer belly and my arms are shrinking by the day.......
Hope everyone is well and please, those who have commented on my post let me know how you are doing.
Great to hear that your levels are staying up. I hear what you are saying about the effects of prednesone. The changes in my body have been unreal. I am tapering to 15mg tomorrow and going to stay at that level for four weeks. Then slowly going down from there. I get very impatient with this slow taper but I'm hoping my platelets don't crash. My highest has been 108. Last test was 101. Its crazy how life revolves around my platelets. Six months ago I never even thought about them. At all. Oh well. Good news about your tests. Keep moving forward.
Not posted here for a while although I do log on most days.
To update you all about my treatment I have been tapered off the steroids 2 months ago today and at my last visit to consultant ( 4 weeks ago ) my platelets were still just over the 200 mark, where they have pretty much been for about 5 months now.
Even though I am really happy, and am back in work ( restricted duties in the office ) I still wake up everyday and the first thing I do is look in my mouth for blisters.
I still can't forget what happened and to be honest am having a hard time dealing with the unknown.
Yes I am sure there are some of you who will think that I am selfish as a lot of you are undergoing treatment and are on long term treatment plans and I am taking nothing, and that I should be grateful.
I know all this but I still spend everyday just waiting for the next crash.
part of me sometimes thinks that I would like to be on medication with a stable number that I know is being held there with the meds. Not knowing when or if it will return really messes with my head.
I know how you feel! I am always worried that the platelets are going to drop again. It is really scary. I don't think we'll ever be able to get that out from the back of our minds but I am trying! I am hoping that I have the immune system modulated between homeopathics and gluten free eating. I figure if it does return, I can deal! I cant let it control my mental health.
Hi Steve, Yes ITP is a rollercoaster of a ride. I was diagnosed in September of 2013. In 2014 I was in and out of the hospital 10 times with a platelet count as low as 4,000. The last time I was hospitalized was in September and October of 2014, 18 days with my lowest count at 4,000. That particular time my kids were told that there was nothing else they can do for me because every treatment they tried was unsuccessful. I had to undergo 2 bone marrow biopsies to try and determine what was going on. Nothing was found, all cleared except for 1 bad chromosone. I also under went 5 blood transfusions, every day of IVIG, NPLATE injection, then they gave me three NPLATE injections in less then 24 hours and those shots were weekly shots, well, my platelets climbed to 223,000 quickly. NPLATE is a stimulant for platelets. Well, finally I was release, only to get a blood clot in my leg that I think contributed to the fast rise in platelets, My bladder became distended and I had to wear a cathetar, then they insert a Vena Cava Filter which started to move a year later and had to undergo yet another outpatient surgery. They pulled that out of my juggler vein in my next. I also spent 7 days in the hospital because the 100mg of prednisone was way too much for my body to handle. I was like a zombie.
Also in September 2013 I was diagnosed with Stage 4 Cirrhosis of the Liver due to fatty liver. My hematologist always ask me when are they giving you a transplant because that might be the answer to my ITP Cure...... We can only hope, but no transplant seen until I am sick to the point that I am on my dead bed. Thats how the transplants work her in ,y part of the world which is Sacramento, Ca USA........
Have faith, never give up, I am a miracle in the works...........
My platelet count with no meds for the last 3 1/2 years ranges from 54,000 - 74,000. 74K was my last reading about 2 months ago, I get tested again on June 11, 2018. Hoping and praying for an even higher count but as long as I stay under 50,000 I'm good.
Remember, faith and believing is all you need, everything else will fall in place. Good Luck
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