Low platelet count.

[ancientadolescent]

I am 18 months post-transplant and have just developed a low platelet count (3/4). This is resulting in bruising on parts of my body. My local nhs (not liver transplant team) has diagnosed that this is caused by the use of my anti-rejection medication ( cyclosporin/mycophenolate). I am puzzled that if the cause was as indicated then why has it taken 18 months before a reaction. Does anyone have any details about this type of problem and if so,what further measures I could possibly pursue.

[Hidden]

Hi Ancient, your best bet is to talk to your post transplant coordinator, or failing that at a weekend, staff on the liver ward where you had your transplant. I have had a couple of conversations and they have been very helpful. My experience of GPs etc is that they are generally willing to admit they don't know much about the consequences of transplant and are happy to refer on. Hope you can be reassured quickly.

Mike

[AyrshireK in reply to Hidden]

Mike's is very sound advice, your transplant team are there for you for life so this is an issue which needs taken up with them. They are the experts and will check the matter out and see if some alternative meds or adjustments are needed even after all this time. Good as local NHS trusts and docs are you are best to stick with advice from your transplant doctors.

All the best to you.

Katie

[moxoa in reply to Hidden]

Hi, had to phone co ordinators yest Sat. Call switch board at hosp & ask them to page the oncall transplant co ordinator

[Bolly]

No experience if transplant meds I'm afraid but my GP has noticed it's taken 2 years of taking an immunosuppressant for autoimmune hep before my liver enzymes have started to go awry. Same with allergies to meds, sometimes we can take a tablet for years and then one day, bam, we get an allergic reaction. Will be interested to hear what your transplant team say about this.

[ancientadolescent]

Thanks for everyones replies. I am due to visit the transplant team next Fri and will keep everyone informed.

[Dan68]

Hi, I'm 16 months post transplant and the only issue I had with my meds was they were giving me to much prograff which dehydrated me and put me back in hospital for fluid drips. Prograff like all anti rejection drugs are very powerful. Apart from that it has given me a new lease of life after having hep c, non alcoholic cirrhosis and finally liver cancer. I'm on a mixture of meds totalling 10 a day but it's a small price to pay. Good luck

[BLTHollyDawson Volunteer]

Dear ancientadolescent ,

I sent your query to one of our Clinical advisory committee and he responded with the following comments

‘‘this is a little difficult to sort out without further information. Although the proposed cause is still feasible I do not think it is the most likely. An autoimmune process is possible but if no antiplatelet antibodies are detected then a bone marrow examination may be required. I feel that this patient should discuss this issue with the transplant centre’’

I hope this helps? Please do contact your transplant centre and speak with them as they have your full medical history and will be able to advise you.

Kind regards

Sandy Forsyth

Patient Support and Information Manager

[Purpletop]

I agree you should check this thoroughly with your transplant team.

Meanwhile I thought it might be useful to know that I'm a lupus sufferer and I'm taking mycophenolate mofetil at 1g per day for that. The bruising you mention does happen with mycophenolate - the drug could lower the number of platelets, hence the bruising. This happens to me at 1g - you are probably on at least 2 g per day, so it is conceivable that the drug is the cause.

But again, do check with the specialists, they know your case best.

[Purpletop in reply to Purpletop]

And I forgot to mention that I've been on mycophenolate for 18 months and the bruising comes and goes, it isn't consistent.

[ancientadolescent]

Just an update. I have had platelet transfusion,no increase in count. Immunoglobulin transfusions 2*1800 ml,no increase in count. Presently on steroids (predisolone() 60mg per day,no increase in count. Now on reduction of predisolone prior to ceasing dose. Have gained fluid during this treatment,swollen ankles etc. Now I understand that the next treatment may be rituximab. Have had a bone marrow biopsy and everything is fine(no leukaemia). have joined a group in the USA called pdsa,not animals and have received a welcome pack which is full of information. Keeping on and having a positive outlook - this will not beat me!

[ancientadolescent]

Oh in addition. I was on mycophenolate and cyclosporin for anti rejection, the mycophenolate has been stopped but the cyclosporin increased from 75mg to 100 mg twice per day. My liver function tests are okay.