New to this

[mazinuk]

Hiya everyone I'm just popped in to see what I might be facing, I was diagnosed with copd 2years ago, got to grips with that stopped smoking and tried to stay as fit as I can I work full time and keep busy. But then a few weeks ago I had blood's done coz I was feeling a bit under the weather, anyway got a recall back to see gp said he was going to redo blood test because the platelets were low and explained what and why he was redoing the test, anyway I have been back and the concern was the rapid decline in platelets which now have dropped below 50,000, had blood's done today and waiting for results, and hospital appointment symptoms are fatigue and some easily bruising and a red rash in my mouth but not full blown blister more like a rash, i don't have red/purple spots on my legs and no nosebleeds , not sure what next or what to think, worst case scenario or not to worry, I was advised not to travel last week and a couple of weeks off work any thoughts would be appreciated

[Lynwoodley]

Hi don't worry to much I found out about 10 month ago my count was 33 since then it has been between 29-106 it can change daily. I have had bruising and fatigue but no bleeds I have had no medication and after speaking to people in this site you just have to get on with life. I was told by my consultant not to fly if blood below 40 as I do many long haul flights but everybody is different. I take aloe Vera, omega 3 fish oils, multivitamin, folic acid and papaya extract that seems to help me but check before taking anything and only take paracetamol not ibrupofen welcome to the world of ITP

[mazinuk in reply to Lynwoodley]

Thanks for your reply I am just a bit taken aback by it, I was hoping that the next day test will come back normal, or that they say infection here are some meds come back in a month and its back to normal. That hasn't happened so I can only speculate what is wrong. But you have put my mind at rest in some way as I can live with it. Xx thanks again.

[Lynwoodley in reply to mazinuk]

It is very worrying when you first find out but this site is brilliant any questions or worries you have just ask and I'm sure somebody has already been there and done that as the saying goes so will help you to understand or put your mind at rest I have found it invaluable as it's very hard to take it all in at first, I find if my blood is 50 or over I feel fine good luck

[mazinuk in reply to Lynwoodley]

I think it will take a little time to get there with it, I was hoping because my bruising has eased off (probably because I have not been in work) I thought it would just right it's self.

[Topography52_- in reply to Lynwoodley]

I need to ask my consultant about flying I go away in May :(((( got my holiday wardrobe ready : )))))

[sailor]

Hi Mazinuk. Lynwoodley has given you sound advice. The short answer is, do not get too hung up on your count as many, like me, have lived for many years with a low count. Mine has been around 10 for 10+ years with no medication but importantly, no bleeding. This is the most important factor. Bruises and rash coupled with fatigue is normal. However, do stop any dangerous sports or past times that could put you into a dangerous situation. As to work, I worked a normal life routine, and still do at 72. I still fly all over. Later this year I am off to Arizona in July with Prague, Madrid and Germany in between now and then.

Suggest you look at the ITP Support Association web site and join the association. The site is currently under reconstruction so is not complete yet, but will provide enormous information and help with a very good list of haematologists from the UK and the States who specialise in ITP. They also hold an annual convention with top line international speakers which is very inexpensive to attend. All the details are there. They are also involved in supporting research.

Good luck with your blood counts, take heart you are not alone.

[Topography52_- in reply to sailor]

You have answered my question about flying : ))))) just a quick one Sailor I have the nose bleeds but my consultant doesn't seemed to concerned generally they last between 1/2 hour every three days or so then stop then my platelets drop do I need to push this ???? they mentioned my nose may need a little op as this could be my week point taking no meds but I know I am in the best possible hands .

[sailor in reply to Topography52_-]

Short answer is you will have to monitor. If your platelets drop further, you may find your nose bleeds will last longer and be more frequent as there are fewer platelets to plug the gap.

In case your consultant has not told you what happens. Platelets act as bricks when you have a hole in your blood vessels. They build the wall which the blood will then clot against and stop the bleeding. If you have too few platelets, they take a long time to build the wall and may even fail to be able to do that, hence the bleeding will take longer to stop. The blood vessels are continually regenerating and the nose is a popular place for bleeds for this reason, with many people regardless of ITP or not.

That is a very simple explanation but I am sure it will paint the picture. I am sure that is also the principal guiding your consultant. Monitoring seems the best advice at the moment. Lets hope your nose has no weakness in the blood vessels.

Hope that gives some help and comfort and work with your consultant closely.

[Topography52_- in reply to sailor]

My consultant is very informative and always puts me at ease even have her direct number and we have a SOS plan , and now I have my own online consultant : )))) thank you .

[sailor in reply to Topography52_-]

Sounds as though you are completely set up with your medic which is great to hear. As to online consultant, if only. Comes with having had ITP for 25 years and knowing some of the ITP specialist around the country. You live and learn a lot.

Keep smiling your doing great.

[Topography52_- in reply to sailor]

It is all about knowledge and 25 years of itp is a lot of knowledge : ))))

[mazinuk in reply to sailor]

Thanks for that I am still waiting for a diagnosis from the hospital doctors, but it seems that this may be the most probable reason for my platelet count.

[Topography52_-]

Had my weekly platelets results yesterday mine are now at 36 been bobbing up down never been any higher than 60 I bruise very easily have the rash also I am tired working full time generally just pacing myself I only got diagnosed a couple of months ago and this site has been invaluable to me it is a shock to begin with but there is lots of words of wisdom here .

[Kyriak51 in reply to Topography52_-]

Have you been diagnosed with immune ITP? I was diagnosed wit no immune ITP in early 1990s when the only treatment was oral steroids which I refused I was waiting for AMGEN to develop a platelet stimulating med. Nplate, which was approved in 2008,by that time my platelets were between 10 to 15 thousand but I was unaware of Nplate and to sick to argue about treatment. I started with high dose Dexamethasone X 4 days with no effects, I than demanded IVIG (intravenous immunoglobulin), no response. Step #3 was Rituximb IV weekly x 4 weeks with 50% responses rate, no resonance . Finally I was started on Nplate with great response in2010. I have now been on Nplate 7 years to maintain my counts at 50 to 80 thousand which is great for me. The only drawback is the cost, about $15,000 a week for a dose of 8mcg per kg. The max dose is 10mcg per kg, is covered by Medicare, should I require 11 mcg per kg l will die as I can't afford $20,000 per week. The only goog thing is that I'm 72 and have had a good life I worry about the young, we must all work to decrease drug cost. If you have ?s this drug and side effects please ask. Kyriak51

[mazinuk in reply to Kyriak51]

I have not yet got diagnosed but given my symptoms,and discussion with gp who didn't want to speculate until I get my hospital appointment so I felt I had to read cause of low platelet count with normal rbc and wbc this popped up on Google which I know I shouldn't read to much into it until diagnosis but I am curious as to how people cope with this diagnosis. I am sorry if I misled you in my original post but I am just trying not to think the worse.

[Kyriak51 in reply to mazinuk]

You should be seen by a Hemotolagis, what part of the country to you live? Are you near a university medical center? How old are you? Do you have other medical issues. I'm a Patient and HEM/ONC RN, I can direct you to appreciate medical sites such as the Moho Clinic. Let me know if I can help, have a good day. Kyriak51

[Monty55555 in reply to Kyriak51]

Hi Kyriak, i'm Currently on N Plate. I am half way on the dose currently on 5mcg, my platelets have been 8000 for the last 4 weeks. do you get any side effects from it? im hoping when the dose goes up my platelets will too. I'm 28, it was abit of a shock to begin with when I found out I had ITP I have come to terms with it now. Tom

[Kyriak51 in reply to Monty55555]

No, my only SE are with low counts: fatigue, bruising, extreme irritability (PMS on steroids), depression and increased pain. I can send more information if you like. I'm not only a patient but a HEM/ONC nurse.e-mail: [e-mail] Hang in there things will get better.

[Kyriak51 in reply to Monty55555]

Hi TomI made a mistake should be:mayoclinic.org for info on ITP, sorry kyriak51

[Topography52_-]

A little add on I have also started to get the nose bleeds I know when this happens my head feels fuzzy : ))))).

[mazinuk in reply to Topography52_-]

Thanks for your reply I know I will get my head around it soon

[Morgan]

Are you taking any meds for your COPD - they could be affecting your platelets. I was diagnosed ITP by a bone marrow sample 15 yrs ago. Not on any meds currently.

[mazinuk in reply to Morgan]

I have 2 inhalers and have been on them for a long time now and have previous blood tests that were normal thanks for that I discussed my medication with doctor who didn't seem to think that is the case but process of illimination *at the moment so will have to see what they say at the hospital