Found out I have ITP June 4th. Looking back I think I’ve had it a long time (probably for years but not all the time and maybe not low low). This year I’d been bruising a lot on my legs arms and midriff. Found out I had a count of 8. Steroids for a few weeks which put it back up to around the 140/150. Came off them and it dipped to 137 which was great. Last Mondays blood test back down to 57. Another blood test booked for this Wednesday.
no real symptoms no bruising bleeds rash etc.
but I do get hot flushes on and off which I had noted before diagnosis (I’m 62 well past that stage I thought!). Also achy legs sometimes and muscle aches especially in my hips. I know I’m no spring chicken but been as fit as a flea before!
My main question is exercise and work. I am a very keen photographer and can walk miles with this. Before my count of 57 I went to Bath and climbed all the steep hills did about 15 km. no issues with this but next day I was much more achy legged than I would have been before.Anyone know if this would affect my numbers? Same this weekend walking on flat and not as far. No bruising though. I did notice pre diagnosis if I did a big walk(and I power walk) my legs had loads of green/yellow bruises. Haven’t had them lately.
I have a very busy job as a school catering manager on my feet for 7 hours 5 days a week. I did take some time off end of last term as the steroids made me feel like a zombie. I have told them I am going back in 2 weeks but to be honest I am a little anxious about how I’m going to manage like I did before. Before this I walked to work about a mile away and it’s all uphill quite steep, worked and mostly walked back home. I’ve done this for 32 years! I’m not on any meds and hoping to keep it that way but we will see.
I know I’m a bit of an old bird now but I’m not ready to give in just yet!!
Thanks for listening
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Janau
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Some of the things you feel may be because of the treatment, .
My main point is to keep exercising if you can. So good for your health physical and mental, and your identity: your Bath asventure spunds great. My heamatologist has always encouraged me to keep playing cricket and korfball. Keep doing what you love.
Also I think work can also help to keep you from having an identity defined by illness. Especially if you like your job.
Having said that I have found pacing myself helps. This comes with age too. Slowing down a bit. So that you can keep doing things, do them slightly less frequently so you dont have to give them up. It may be that over the next couple of years you could talk to school about reducing work by a day or two? Or having a job share? Deputise to your most trusted colleague for one day a week?
Steroids are awful. So dont judge ITP by Steroids. I am now on Romiploztin and its so much better .
Dont give in. ITP can be lived alongside, you dont have to change that much. Just tweak things. It'll take a bit of stamina to get the right treatment but you've got thise I can tell.
Thanks so much for your reply! All sound advice I agree. It’s very important to keep up the stuff you enjoy yes. Cricket! My husband is a huge cricket fan I bet you’ve been watching the hundred!
I do love my job yes and my wonderful colleagues I’m very lucky. Don’t think there will be much scope to either reduce hours or job share really as I work for the local council and they don’t seem to look at that in my dept. Can’t get enough staff as it is unfortunately.
I’m very fortunate the the haematology dept I’m with are fantastic. Very friendly and lovely people.
Do you find your fatigue linked to if your platelets go too low or does it do its own thing whatever they are
Ha! Yes really sad the Hundred is over, but tell your husband the Test starts on Wednesday. ( i am playing in our local womens hundred tomorrow).Yes i think i know my platelets are low if i am knackered ( thi sometimes ive gone for a blood test and 'known' theyd be rubbish only to find they are fine.
The things which tire me are social. Physical is not so bad.
But ive got much better at just saying no. Not cramming too much in. I am not much of a bleeder or bryiser and feel fine with lkatelets anove 25, though we aim for above 39 and often above 50. Thats plenty for me. Just take it easy, be kind to yourself and dont worry.
If theres things in life you'd like to change anyway now might be a good opportunity. I used to work very full on, not sure i could fo that now, or want to, and ive found ways round it. Take ❤ care
Fatigue is absolutely a symptom of ITP and the links to the videos that I have attached above have a number of presentations on fatigue and how to handle it.
Hi, I was diagnosed in 2009, but like you I suspect I’d had it for a few years before that. My count then was around 80ish so I was just monitored by the Haematology dept. Then in 2013 my count dipped to 29 so I was started on treatment. My ITP adventure began! First was steroids, then various infusions including Rituximab, finally early in 2014 I started on weekly NPlate injections which worked a treat raising my count to around 50-60. I was happy with that for about 3 years until an impending touring holiday in USA drove me to look at taking tablets (NPlate needed to be refrigerated which would have been impossible during my trip). My haematologist put me on Eltrombopag tablets which have worked fine and still do, my count is currently over 100. I do still bruise sometimes and if I get a bruise caused by some injury, it takes a long time to heal. I recently banged the back of my hand and a lump followed by a massive bruise formed. That was 2 weeks ago and my hand is still slightly discoloured! However I am not plagued by fatigue and I can walk for miles - I know what you mean about Bath tho, we were there last Thursday. I keep active by going to the gym and doing Pilates. At 71 I believe keeping as active as possible is crucial and I won’t let my condition dictate what I can and can’t do. Thinking positive thoughts is key. As long as your count is at least 50 my Haematologist would be happy. Good luck.
hi! Thank you for your reply that was very interesting and helpful. Yes I agree keep moving yes. Use it or lose it. Glad the meds are working for you as well. I just had my result of Mondays blood test and it’s dropped again to 31. I’ve no symptoms whatsoever and feel great. Went for a short run this morning first time. I was concerned my back to exercising might make it drop but she said no. Another test on the 2nd but keep an eye for any bruising etc. I know what you mean about the bruises lasting a long time. When mine were bad they lasted for weeks and weeks.
She did say that my blood has shown markers for inflammation for rheumatoid issues and I do get joint pain in my legs and hips which was made really worse by the steroids. I put it down to getting older and maybe doing too much. She is sending off to rheumatology to see what they say. She said one auto immune disease often begets another.
By the way love Bath! I’m in Cardiff so go very regularly. There next month for the Jane Austen parade! Take care and thanks again 😀
Sorry to hear about the drop in platelet count, but if you feel fine then don’t let it worry you. I just take one day at a time and if I feel fine then that’s a bonus!
You are very lucky living so close to Bath. We live in the north east so a trip to Bath entails a very long journey via the M5!! Unless we tow the caravan to stay at a nearby campsite which is what we did last week. 😁
I feel better since it’s dropped dosent make sense but I’m not knocking it! Just noticed a smallish bruise on my thigh but my son’s dog jumped up at me yesterday exactly where it is. As soon as he did it I thought I shouldn’t have let him do that but didn’t think. At least I know where it’s come from. Will keep an eye on it.
Hi, I was diagnosed back in 2020 and it’s been a roller coaster for me. Steroids were awful, Eltromopobag didn’t work, Romiplostim the dose kept having to be increased but now I’m on Avatrompobag for the past 2 years which is keeping my counts up. I find stress affects my counts and I do suffer from fatigue if they get low. But one of my ‘tells’ for low platelets are hot flushes. I am at that age but only get hot flushes when my platelets are low so it’s interesting someone else has the same symptom. I have come across a few other people, a teenager and another woman (unknown age), but so far no men. No doctor or Haemo I’ve spoken to knows why or really considers it a symptom.
As everyone else has said, keep a good mental attitude and don’t let it stop you doing what you love.
Hi Clarissa! Thanks for the reply. I think stress too. I deal with problems ok at the time but after I go down like a lead balloon and I have a husband with various health problems and he is not the best patient in the world (like most men) and it’s hard to deal with emotionally at times. He was admitted yesterday as an emergency but seems a lot better today but I’m hoping this won’t affect my numbers 🤞
Sounds like you’ve had a run around with m fs. Must be trial and error I suppose. Glad you found one that is good for you
hi janau - I have had ITP for 10 years now and been on several medications - steroids, Fostamatinib and nplate. I have now taken myself off all medication and decided not to have any more. My platelets are between 40 and 50 which was sort of the same when I was on medication - I was getting sore and swollen joints and the fostamatinib gave me horrendous gastric problems which I could not continue with. I’ve been off everything for a year now and feel so much better - yes still get a bit fatigued but I feel generally so well and so long as my platelets are over 30 my consultant is happy I have no medication - I have not had a flare up of my joint issue either so am thinking this was medication induced. It’s trial and error with itp and as I don’t bleed I am happy to just monitor my platelets and continue with life without medication - exercise and healthy eating is important and I just rest if I’m tired. Good luck
Hi! That sounds so much better for you and I hope I can do the same. Less meds the better. Ok you have to weigh up any risk but you also have to have quality of life. Do you get any occasional bruising or anything? And if so do you just sort of ignore it? Mine was 31 last Monday which is the lowest I’ve had since the initial 8 at diagnosis when my legs had the huge multiple purple ones. But at 31 I’ve no bruising. So next test a week on Monday. They’ve said any bruising etc call us. But if I do get the occasional one from an injury (that’s bound to happen I’m really clumsy!) do they include that? They just say any bruising I assume they mean one you can’t explain.
So glad you are feeling much better and thanks for replying. Enjoy your weekend 🙂
Yes, I think just unexplained btusing may indicate platelets have dropped. I am not a bleeder or bruiser snd have never had to do this even though platelets have been down to 10. I currently have loads of bruisers, but from cricket. Platelets safely at 63Fir a few years i had no drugs just low dose steroids if they dropped worked well. Also fewcyears of maintenance dose, just 5 mg every 2 days.......
Now on romiplostin , working nicely no side effects......
Those low steroids were ok too just not forever cos of bones.....
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