Platelet levels keep falling

[Abycat]

Hi all, not posted for a while but do read posts regularly. I'm only on 10mgs MTX , started January this year, however my platelet levels keep falling and last blood test result was 113. My GP contacted me and told me to stop MTX however when I contacted rheumatology helpline, I was told to continue. (I'm switching to MTX injections next month and advised then to go back to fortnightly blood tests as currently monthly).

I had a splenectomy many years ago, is there anyone on MTX who has no spleen and did you have the same problem? If so, what was the outcome? I was told this was unusual that my platelet count keeps falling but I have read posts here that this does happen, so bit confused.

Thanks for reading and any advise would be appreciated.

[Summerrain14]

Really sorry I have no experience of this but hope someone else will be able to reply and give their experience. Just wanted to say hi. 😊

[Abycat in reply to Summerrain14]

Thanks and Hi to you too! hopefully someone might be able to offer some advice x

[Pitbull2017]

Hi I've been on MTX for 20 years and my platlet count is usually between 110 and 120 with no adverse side affect, the guidelines for platlets is 150 to 450 so we are just outside, you must be having regular blood tests being on MTX so your platlet count will be assessed, my wife suffers from ITP so I have a keen interest in platlets, on a personal note I've recently realised how important vitamin levels are, in my case B12 low levels can have serious problems, if you have concerns about platlets ask your GP and when you get chance your consultant they are the professionals, good luck.

[Abycat in reply to Pitbull2017]

Hi, and many thanks for your reply. So pleased to hear you are doing well with no adverse side effects. I certainly will discuss with my GP my concerns and query vitamin B12 levels. My consultant doesn't seem concerned that I have had a splenectomy. I have hospital appointment next friday with rheumy nurse and will discuss further with her also.

I had my splenectomy due to ITP and my platelet count has always been on the low side, whether this due to the splenectomy or not, I have no idea!

Best wishes.

[Pitbull2017 in reply to Abycat]

I know how serious ITP can be, my wife spent 5 weeks in intensive care because her platelet count was under 50, she had transfusions every day which came from other areas and hospitals of platelets and hemoglobin, she would have a count of 50 plus at night next morning it would be around 20 this went on for sometime, one day I had a early morning call to go to the hospital because she was in a bad way, thank god she pulled through, I've read on this site people with ITP trivialising the illness it's probably because they don't realise how bad it can be if it becomes chronic, you can bleed form many parts of your body, my wife had a bleed on the brain which caused a stroke which caused difficulty in her speech and movement, thankfully she has made a 100% recovery, I haven't put this on here to frighten anyone but just to make them aware.

[Abycat in reply to Pitbull2017]

Yes I agree, people dont realise how very serious ITP can be, i had several spells in hospital but the decision was made to remove my spleen so I do empathise. I am so pleased to hear that your wife recovered well from her stroke, this would have been an additional worrying time for you both. Those platelet levels were indeed dangerously low. I believe mine went down to around 30ish at one point.

I do hope both you and your wife are doing well.