Has anyone else had proteins in their blood, picked up when you have your monthly Methotrexate blood tests? I’ve had this twice now & my GP was quite concerned & got in touch early last week.
It has worried me a lot as I was then sent a 14 day referral letter to the haematology department of my hospital, it says it “won’t necessarily be cancer” but ? I had the initial appointment today, they think it’s something related to bone marrow. I have to have a bone marrow test next week, sticking a needle in your back area, sounds awful. Then have to have a “PET” scan of the body.
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Shamrockgirl
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Hi I understand your concern I had to see haematology when my immunoglobulins were knocked out never to return. I was very fearful of a lumbapuncture but to be honest it was a breeze compared to some procedures I’ve had before. They use entinox which they use during child birth (laughing gas I think) but unlike childbirth you can have as much as you need. Was a strange sensation but nothing too bad. That maybe slightly different to the procedure you’re having but I’m certain they’ll take care of you and hopefully you get the all clear as a result of it. Better to know one way or the other but I’m sure everyone will wish you luck and as much support as you need too. Keep us posted how it goes please.
Not quite the same thing as you are having, but I was referred to Haematology when a couple of my mtx monitoring bloods were coming up as high (Lymphocytes). Rheumatology wouldn't tell me what it was about just that I would be receiving blood forms and to take them to hospital. They did an indepth test and turned out though high all those blood cells were healthy, and it was just the way my bloods were. Fingers crossed it will be something like that for you.
My dh had to go there as well as he had too many platelets and he is on chemo to bring them down which they are doing as he has dropped nearly 200 which is good. Other than that i can't add to your post. Sending hugs.xxxxx
Hi. I only get a blood test every three months so if you have one every month whatever problem you may have, if you do actually have one, fingers crossed, has been discovered very very early on.
I caught meningitis many years ago and had a lumbapuncture and it didn’t hurt one bit.
Best wishes.
Hi. I did at the start of my RA treatment (about ten years ago). I was too stressed about other things to even know what it meant. I think I took some anti-biotics. I’m still here! Take care x
They really shouldn’t have mentioned the C word. How is that not stress inducing? Whatever the outcome, it is good they are investigating and acting on things.
The bone marrow biopsy isn’t too bad, the jab they give you before it numbs the area, all I felt was a bit of tugging, I am the biggest coward out. I have para proteins in my blood which shouldn’t be present.. I had treatment for lymphoma 3 years ago, my bloods are checked regularly, the para proteins have showed in my last test, my haematologist is keeping her eye on them. I am actually having a f2f with her next month and will prob be examined and get more bloods done, not seen her for two years because of Covid. Im sure they will keep an eye on them, my haematologist is very thorough and one of the best doctors I have ever had. Wish they were all like her.
Thanks a lot for this, reassures me to some extent & glad I’m not the only coward about these things. Even for all the blood tests over many years, I always look away when they get the needle ready!
Me too, I never look. The only thing I was interested in was looking at what they took out my bone marrow, that was a bit weird looking and not what I thought it was going to be.. I also had a sliver of bone taken for biopsy, I looked at that. But don’t let me see blood from my arm, it freaks me out lol.
I have RA and a paraprotein was found in my blood too , about 12 years ago . I asked what it was and I was just told it was nothing much and they would keep an eye on it . A few years later after another comprehensive blood test it was mentioned again and I was told that I have MGUS ( Monoclonal Gammopathy of Undetermined Significance ). It is a precancerous condition which doesn’t necessarily change to become cancer ( ie Myeloma/ Lymphoma ) . In fact I’ve read that the vast majority of MGUS patients will never develop malignancy associated with this .
As well as blood tests for RA , I have blood tests every six months for MGUS called “serum protein electrophoresis” to see if there is any progression . So far I haven’t needed to see a haematologist or have a bone marrow tests as all my immunoglobulins are in the normal range and the paraproteins are very low and stable . The GP does the blood tests and with the rheumatologist, they keep an eye on the situation. Cancer has never been mentioned but if you read about MGUS it IS mentioned .
I was very concerned at first but now it rarely crosses my mind . I know that MGUS is connected to immune conditions but I rarely think about it until the blood test comes around . I don’t have any symptoms . Keep well !
Interesting post Briefencounter, I’d never heard of paraproteins till I had lymphoma, they totally disappeared after my chemo which was good according to my haematologist, I will be asking more from her when I see her next month.
I have something called MGUS which was discovered when they found a paraprotein in my blood . I have written about my discovery to Lizard28 below , as she has had a similar problem . Keep well !
Thank you for this, very interesting & it’s a possibility. I’m one of those people who seem to get all sorts if medically related things, usually not life threatening.
I was told 5 years ago that I had proteins in my blood & was referred to a haematologist. They told me that I had MGUS & I was monitored every 4 months for 2 years. About 3 years ago the numbers changed (I still don’t fully understand them) & I was called in for a bone marrow biopsy & PET CT scan. The BMB was slightly uncomfortable but any pain was insignificant in comparison to RA pain. Unfortunately my test results showed that the MGUS had transformed into Multiple Myeloma (a blood cancer) but thankfully I’m still in the ‘Smouldering’ stage which means that the cancer has not yet started damaging my bones. Long may it stay that way! Hopefully your tests will bring good news but if not, don’t panic about it too much. The support that the haematology team offer at my hospital is second to none, hopefully yours will be too xx
Sorry to hear about your Smouldering MM , JRTprints . It is something that I have been keeping my eye on since I found out that I had MGUS 12 years ago . I am monitored by blood tests every 6 months but my very low number of paraproteins has not changed and I have not seen an haematologist or had a bone marrow test .When you transformed to MM was it just your numbers that changed or did you have any symptoms ? Were you offered any treatments or are you still just being monitored by blood tests ?
Hi Briefencounter, apologies for the delay in replying, I’ve not yet worked out how to get email notifications.
I believe that the reason I was called in for the BMB was because my paraprotein levels had gone up. The results of the biopsy showed that I had 15% paraproteins in the bone marrow. That’s when they told me that I had transformed to Smouldering Myeloma & they sent me for a PET CT Scan to see if there was any bone damage, which there was not, thankfully. I’ve been on 4-monthly blood tests for a while now & even though my paraproteins are increasing very slowly (1 or 2 points at every test) I’m not currently receiving any treatment (it’s called ‘Watch & Wait’). At my most recent telephone review, I asked what number the PPs would need to get to before treatment started. The Haematologist said there wasn’t a specific number. The decision to treat is based on symptoms, not numbers. Although I do have anaemia, I’ve had it for a years & the suspicion is that it’s being caused by the RA, not the MM. Fortunately I haven’t yet had any bone pain in the long bones (humerus & femur), the spine or the ribs as that seems to be key in deciding whether or not further investigation or treatment is required. Hopefully you’ll stay with MGUS for a few more years yet & not develop MM at any point in the future. Although, if you do, don’t panic too much as your Haematology team will look after you well xx
Thanks for replying JRTprints - Good to hear from you and thanks for your detailed reply .
It's an odd disease , MGUS . When I was first told in a letter that I had "paraproteinemia" there was no explanation and when I questioned it , I was told it's nothing much and not to worry about it . Scroll on many years later and after an MRI on my hip area things moved very quickly and I was told that I had MGUS .
After the initial finding I didn't have any other blood tests but after the MRI I have them 6 monthly . I've read around the subject now and have a better understanding. I have read that many elderly people get it ( not suggesting that you are 😉) without knowing they've got MGUS and that it is more prevalent with people with an autoimmune condition.
I too have anaemia , like you associated with RA , I also have osteoporosis, again ascribed to RA .
My paraprotein is IgG kappa , it started at 2gl and has remained at that level for 12 years . All other immunoglobulins within the normal range .
It's good to hear that they are keeping a close eye on you . Have you come across The Myeloma Beacon site and their forum . I think it's American but it does describe all levels of MGUS including Smouldering Myeloma and it's helpful to read other people's journeys with MGUS .
Hi Sham, I've been on methotrexate for 20 years but have not had issues with proteins in my blood. My liver function has been slowly declining so I have gone on a biologic and reduced my metho to 10 mg and my blood work popped right back to normal. If your tests come back normal and you suspect the MTX, you can work with your rheum. to back off or stop for a few months and see if your proteins go back to normal.
Update on my situation, at my consultant appointment on Thursday, still in shock. I’d had the PET scan & bone marrow biopsy & they said I have Smouldering Myeloma, quite rare & no treatment. So many unanswered questions, given me a print out from the Myeloma UK organisation. It usually progresses to active myeloma, but can be quite some time. They can then offer treatment? They will do 2 monthly blood tests & a phone call from Haematology initially. It says it’s a complex condition & sometimes won’t progress to myeloma, but to a related condition, such as AL amyloidosis.
I think it will take a while to take it all in & at some point I will make contact with Myeloma UK & the Big C centre at the hospital.
Oh you poor thing. How shocking for you. I have just read this, which may help you feel a bit more informed: cancerresearchuk.org/about-...
In the first 5 years you have a 50% chance of symptoms developing, so they will monitor you closely. After that, a negligible chance.
Get an IAPTS referral from your GP as you will need support; it’s scary stuff. Day at a time.
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