Itp and MGUS

[Julie115]

I have suffered with itp for 7 years now I have had lots of tests done now I have MGUS with itp does anyone else suffer with itp and MGUS much appreciated Julie

[prudencepayes]

Yes, I also have MGUS with ITP. I had a bone marrow biopsy to check my plasma cells . I was told that it was probably reactive and a result of my bone marrow working to replace platelets. Also that it would be monitored periodically but that it was very unlikely to turn into something more sinister. My understanding is that many people have MGUS but never find out. Try not to worry.

[Julie115 in reply to prudencepayes]

Hi yes I have losts of tests done myself just had a Skeleton x Ray done then have to have more bloods taken haven't had a bone biopsy done yet just waiting on my results in march yes we have to think positive 😀😀

[Jessi0421]

Can you please explain to me what MGUS is? I've had chronic ITP for 9 years and receive NPlate injections weekly, dosage based on my counts each week. My counts are very up-down and I'm currently testing at 13K. I've been having quite a lot of joint pain the last few months and looking for answers. My doctor will be running additional blood tests on Monday to hopefully get some answers.

[Julie115 in reply to Jessi0421]

Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. The protein is produced in a type of white blood cell (plasma cells) in your bone marrow. MGUS usually causes no problems.27 Apr 2016

[Hidden in reply to Jessi0421]

Hi, I was told that the joint pain is a side effect of Nplate.

[Jessi0421 in reply to Hidden]

I've also found that through my research on it. However, I've been on it since 2010 and I am just now noticing the joint/bone pains in my arms and shoulders. Open-hand grasping has also become more difficult. We recently moved homes and I had to move classrooms at the same time. (I teach 2nd grade). It started right after. I thought it was just due to being out of shape in my upper body but that was in September. Shouldn't still be bothering me now.

I'm just concerned what it could be and then I came across this post. I try very hard to avoid Googling any ailments as it always seems to tell me worst case scenario. I thought this sounded frighteningly similar to what I've been experiencing.

[Julie115 in reply to Jessi0421]

Hi I have itp but when my Hematologist was exmaing my bloods they come across MGUS by mistake when testing my bloods but I Have also low on b12 I get a lot of headaches loss of appetite tiredness etc etc I do sometimes get the bone pain I think it's connected to itp even the the doctor reckon it's not connected but I have read lots of post with the same symptoms

[Hidden in reply to Jessi0421]

Quite agree on using Google. I was on Nplate for 2 years and it gradually became less effective. Body aches were awful and I also had bad headaches and blurred vision. I don't think any 2 people have the same probs. Good luck and take care.

[Julie115 in reply to Hidden]

You too Takecare stay positive

[Julie115 in reply to Jessi0421]

It's called MGUS they find it by mistake wen they taking blood tests it is frightening at first but you do get frequent check ups every 3 months by your Hematologist

[Crippsy99]

I was diagnosed with ITP and MGUS 4 years ago