Seeing a consultant

Hello Guys

I have recently been through the whole drama of being admitted with v low platelet counts of 4 (two weeks ago) have had immunoglobulin- my levels have gone up to 36 as of last week i have another blood test tomorrow at the hospital but wanted to know how long one has to wait normally to see the specialist/consultant to see the prognosis and the results of the Bone Marrow biopsy- getting a bit anxious thanks for your help

9 Replies

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  • If ur in U.K. A consultant will be in the background advising the dr you see as itp is a rare auto immune condition. That said - even when u see consultant you will probably be no clearer on prognosis- if you speak to 50 people with itp you will hear 50 different experiences n prognosis- mainly because there is no one conclusive cause of itp. Treatments are different, reactions to the treatments are different from person to person. The key for me was to deal with the unknowns accept them and get on with my life without obsessing about platelet counts. This takes time and a bit of a roller coaster. I'm on 6 months blood tests - which is progress from daily !! And I may relapse - having had Rituximab in Aug 2014- there is evidence that relapse can occur after2/3 yrs. my last bloods in Jan 17. had dropped from 92 to 50 but fretting is not going to achieve anything and depending on what u read - may actually contribute to further decline in platelets... although I'm not convinced. You can equip yourself with knowledge ITP association is very good. And there's a very informative blog by a chap connected to ITP support association that will give you overview of the ups n downs. You have entered the twilight zone.!! I wish you well.

  • "you have Entered the twilight zone" :) Eveplate - the best thing is to keep positive, it is very up and down, reading blogs and being part of this helps a lot. Every Person reacts differently to treatments just because something hasn't worked don't worry they have a lot of other treatments to try. I have tried most of them and they haven't done a lot I'm currently on one called N Plate which is an injection so fingers crossed this will work for me.

    Tom

  • n plate here too.tried everything else.I'm still up&down.diagnosed October last yr.they want me to self inject soon .im scared.im in Birmingham uk.hi every one 😊

  • How long have you been on the N plate for? I think I have been on it for 3 weeks now and mine are still up and down, trying to work out the amount to give me at the moment. I got diagnosed in august. Don't be scared I didn't think I would be able to inject myself but done it last week and was fine, it will get easier every time you do if, and for me if it works it would be brilliant as it would just be one injection a week. Thanks Tom

  • Hi there. The reply you have had is sound advice. Depending on where you live, will depend on your timescale for seeing the consultant. Surprised you have had a bone marrow biopsy so early in your treatment though. ITP can often be brought on by a viral infection or other medical ailment and not a bone marrow problem. I have lived on a count of 10 for many years with only yearly blood tests with my consultant but I am fortunate not to bleed spontaneously. If you are not happy with your treatment, look at the ITP Association web site. They list hospitals around the country where there are specialists in ITP which after all is a rare condition. Keep smiling, there are far worse conditions to suffer from.

  • I am surprised at the number of people who are saying a bone narrow biopsy is not usually performed early on. One of the first things in my treatment for itp was a bone marrow biopsy, but only to rule out any other cause for my low platelet count. It didn't hurt, took about half an hour and the only discomfort was the fact I couldn't take a bath or shower for 48 hours. It was done in 2009, when itp was first diagnosed and my age was below 60 at that time. I have had one more bone marrow biopsy since then as I was having nplate injections, and it is recommended that a bmb is done every couple of years to check that the bone marrow is not being badly affected by the injections. My count is now stable at around 50-70 and I have been self injecting for 2 years.

  • Wow it didnt hurt twice - cool glad you are stable

  • For m daughter (6 at the time) we were told by out ITP clinic that no bone marrow biopsy is done before 3 months as the disease can improve by itself quickly in children. Sadly in her case it did not and after 4 months she had the biopsy.

  • I am new to this ITP too ( diagnosed in December due to shingles outbreak ) I have weekly bloods get told the same every week do,s don't,s and now I know what to look out for still scary but u know what tomorrow is another day ( bloods : ))) ) ha ha I am hopeful .

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