I was diagnosed with ITP July 2011 whilst at the same time having CLL - which is not unusual, so I'm told!!. In the early stages I suffered with leg cramps which when I mention it to my Haematologist he just dismissed it.
Has anyone else had the same and if so did the consultant accept that it was part of the condition or not?
Hi. I had ITP three years ago, it's been in remission since, however I have recently been diagnosed with Addison's disease. Addison's can cause ITP and one of the symptoms is cramp especially in the legs, this is to do with not storing salt. Also fatigue, general muscle and joint pain etc
Hi, sorry not had leg cramps with ITP.
Hi, I can't have a splenectomy because the indium platelet scan I had in September showed my liver and spleen were destroying my platelets. I am due to begin a course of Rituximab on 12th December 2012. Has anybody had this treatment and does it work?
Have to re-iterate - none of us are Haemotologists - we just have been through the mill like you.
Like every treatment for ITP it works for some people - some getting long lasting remission. You should be aware this is pretty heavy stuff - monoclonal antibody - I had it and it did absolutely nothing and I had no nasty side effects - discuss with your haemotologist the fact that your immune system will be compromised for at least six months after having Rituximab and the potential for some severe side effects whilst being infused - you will probably be given and injection of antihistamine, steroid injection and paracetamol to take (what's that expression "there may be trouble ahead") prior to the Rituximab - I was given an alert card after the treatment.
Have you been offered Nplate? - probably not as they will try all the cheaper alternatives on you first.
I have had all the treatments and Nplate is the only thing that has kept my platelet levels reasonable.
If you are not in any immediate danger I would enjoy your Christmas and start any treatment after the festive season.
My 4 year old has chronic ITP and experiences severe leg pain from time to time. Our doctor keeps reassuring us it is not related and it is likely growing pains, though it's hard not to worry. Seeing this post makes me think twice, though this is the first time I've ever heard of anyone else with ITP discuss leg cramps/pain. Sorry - not much help - but I am curious to see if anyone else has info on this possible correlation.
My son, who was diagnosed with ITP in late July complained of leg 'pains' for a few weeks before we realised anything was even wrong. We dismissed it as growing pains also until the day he woke up, covered in brusies and petechiae, and we rushed him to hospital fearing the worst.
He was diagnosed with ITP and given immunoglobulin after a mouth bleed (all this in the space of three days!). Since, and thankfully, we have had no further episodes; bruising is virtually nil and his energy levels have increased.
However, in the past couple of weeks, he has started to get very tired again (I know this isn't a recognised symptom, along with the leg pain, but my son seems to get extremely tired with it) and has also compained a few times of his legs hurting. Bearing in mind that my son has only recently turned 4, it's all quite a lot for him! We are due back to see the haemotologist on the 2nd January so fingers crossed he stays well over Christmas and it is just a blip.
I know this may be completely random too but we have noticed my son goes off his food also (he lost an awful lot of weight when he was originally poorly) and that if he does eat a 'big' meal, he will fall asleep almost immediately - almost like his body cannot cope with too many things at once! I wonder if anyone else finds this?
just out of curiosity, did your son have a bone marrow biopsy? I am asking because this condition is one of exclusion and one of the only ways to be sure it's ITP is having a bone marrow biopsy.
Our situation is very similar to that of MaineMom3, and I too am interested to see if anyone has any further insight into a link.
My 6-year-old son who has chronic ITP experiences intense leg pain now and again; most often during the night whilst he's sleeping (the pain wakes him up quite violently, but is quickly relieved by taking paracetamol).
He started suffering with these leg pains many months before he was diagnosed with ITP, and at that time we were told by our doctor that it was just 'growing pains', 'nothing to worry about'.
Since discovering he has ITP we have raised the question of the leg cramps/aches again, but the paediatricians and haematologists (here in France) still insist that they are not a symptom of ITP.
I've been on Nplate, and recently had a low count, (3,000). The doc upped my dose of Nplate, and then I got horrible leg pains that kept me awake at night. My hemo said that it could possibly be bone pain resulting from the increased platelet production in my bone marrow. Makes sense to me. My count has gone up, and the night leg pain has gotten much much better.
The side effects of medication that used for treating Itp it mostly cause bone and joint pain,