I just thought I'd write an update as I hope this will inspire others with diagnosis difficulties not to give up!.
I had an emergency Rheumy nurse appointment that has resulted in me being put back onto MTX after a nine year break from DMARDS!. I haven't been very well for 2-3 years and had battled with them all to no avail until now!. The Rheumy nurse was smart in noticing that suddenly in my bloods I had high ferritin levels!. ( nurses are worth their weight in gold)!. As this reading is indicative of chronic inflammation the Rheumy's finally acted!. I gather from research it's an acute phase protein that can go artificially high in cases of chronic illness anaemia!.
I wonder how prevalent this is so would love to hear from you who've had this come up?. I'm pleased after years of negative bloods for lupus/ UCTD that they've found a new marker that actually matched how I've been feeling!. As we know so often it doesn't!.
I'm also hoping the MTX will help my toe as its slightly better from the steroid injection I've just had but still very painful to walk. Podiatry and Orthapaedic Surgeon appts in the new year!.
I know it will help the arthritis as I've taken it before and it helped greatly so looking forward to feeling better. Just remember for bloods that if it's not asked for , it can't be found and a breakthru can suddenly happen for those of you who might be struggling!.
Wishing you all a very Healthy Christmas and New Year and thanks so much for all your help and advice this year lovelies.
MistyX
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misty14
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Many thanks weathervane. Happy Christmas to you and hope you all have a lovely time. They said it takes 6 weeks to kick in and hope to start it end of this week. I'm looking forward to a rest from a lot of appts!. How's the shopping going?. Take care best wishesXx
Oh gosh weathervane, you've got lots to do!. I've just done last lot of shopping today, it's getting busier!. Take care and don't overdo it. Fingers crossed for tomorrow. Xx
Got good bit done this afternoon and writing card this evening, not my favourite job !! Glad you are all sorted , hope your feet are up now and yoyhave a cuppa xxx
How did yesterday go weathervane?. Hope helpful for you. I was lucky and was the first to be done and so got home earlier. It's making a difference to my leg and backache shoukd go by Santa time!. Hope your catching up ok with it all. Take care and best wishesXx
Hi misty, glad yesterday went well for you 😀. I got on well yesterday as well , advised to get tooth out first then should be able to the rituximab at end of January . I have to have an MRI of my pelvis as have inflammation of one of the joints , but that could take months . Its probably a factor that rituximab has been delayed causing increase in inflammation in some joints.
My big son is home Friday, really looking forward to seeing him again, he will keep us busy as he wants to go shopping , will have to include lots of tea breaks .
Take care , wishing you and your family a really happy painfree 🎄 ⛄️🎅⭐️❄️🍗🥂🍹xxxx
I'm really pleased yesterday went well weathervane and your tooth plan was okayed. It must be delayed treatment causing your hip inflammation!. Hope you will get it end of Jan. An X-ray of your hips might have been quicker than MRI. Do have a wonderful Christmas and new year and enjoy your sons visit. I'm seeing a friend on Thursday. Hope as painfree for you too. TAKE CAREXx
Thanks so much weathervane for your lovely messages too. I didn't know there were smaller joints in the pelvis, can learn everyday on here but it must be painful.
We're in the minuses here too but will be wet and windy again by end of week. Keep cosy and have a very HAPPY CHRISTMAS too. Look forward to chatting in the New Year. Xx🎄❄️⛄️💕😊💕
Thanks so much GE, do hope you and your family have a lovely , peaceful time too. I must admit I'm looking forward to the rest. At least we don't have appts to go to at Christmas!. Take care tooXx
Misty - I don’t remember having the raised ferritin but definitely told « drop in hematocrit with normal iron stores » when my internist was trying to figure out what was wrong with me. I learned later this is the « anemia of chronic disease. » When my blood count drops, the rheumatologist has always asked for a repeat test.
Apparently, it takes a while for this type of anemia to occur. You have been feeling poorly for a long time, and it seems the increasing inflammation showed in the increased iron.
So hoping the methotrexate helps your arthritis, that darn toe, and blood counts. Now they will also have a marker for improvement in your labs, right? 🎈
Thanks kay: very interesting! Cause my heamatocrit has been significantly below normal ref range for over 10 years...i’ve read up in this deficiency so know a bit about its relevance (especially re my chronic immunoglobulin deficiency) but none of my consultants ever do more than shrug when i mention this/ask about its significance...my blood is constantly being tested, and i get all the results...so i’m ‘watching & waiting’ for the moment a medic finally says something revealing...
Well, it could be they expect you to have a low hematocrit with your level of disease. Your rheumatologist probably knows your levels and what they mean for you. This is the “art of medicine.” You are on daily immunosuppressants, so the only thing he could do to is increase your medications. But it is not that simple probably. What is your hematocrit? Ferritin?
👍 Yes, of course you’re right: i know my levels too cause, luck me, my GP has given me all my historic blood test results & since my infant onset lupus diagnosis was recovered i. 2010, all my consultants have made sure i keep copies + we discuss them at each appt. and i’m pretty good at researching the official implications of bloods results.
Because i have a good working relationship with my consultants + all their treatments consistently help A LOT, i don’t feel concerned about my low haematocrit, or their reluctance to comment on it....also, the normal ref range seems to vary between hospitals...and usually my count is only just below normal - anywhere between 0.36 & 0.38.
👍 My immunology chief likes to say: treating patients like you is as much an art as a science
Go to: Pattern of Anemia in Lupus. Way above my head. But the conclusion seems clear. « Anemia is strictly associated with the activity of the disease and the organ lésion index both at the disease onset and during its evolution; this association being even closer than that with the anti-dsDNA antibody. »
Thanks for this Kay. I tried to read through the article but lots of it way over my head too. But as I've been battling iron deficiency anemia in recent years and getting nowhere, it's fascinating that it is linked to lupus and its related conditions. I've yet to get a doctor to take it seriously either. I just get told take more iron. Definitely something to keep asking about though. The side effects of taking iron are worse than anything for me. I'd love to get to the bottom of it!
Thanks so much Kay, for your helpful info. It's also interesting we're both UCTD and in your case you've had some different interesting lab resukts over the years to aid diagnosis!.
That's exactly what pleases me about having this marker at last for the inflammation that goes with symptoms. I can't wait for better things in the new year.
I'm seeing my GP on Friday to hopefully start the MTX!. Take care Xx
Hmmm...Kay, thanks for this response. My haematocrit has also been below normal for the past couple years. Not by much, but enough to skew my blood to borderline from time to time.
I’ve had raised ferritin levels; normals something like up to 150 on my test range and mines always been 400-500 since being unwell. No ones been able to say anything other than it must be my bodies way of showing inflammation, they seem unbothered that it has been up to triple what their normal range goes up to yet tell me unless it’s over 1000 then they don’t worry 🤷🏼♀️
So could this be a sign of chronic anaemia? Sorry if I’ve got that wrong x
Thanks so much littlemisssunshine for replying and giving helpful info about it!. I don't know what my level was but it must have been high for my Rheumy to suddenly act!. They have been so reluctant too!. I'm pleased like you to have an inflammation marker that will give an accurate picture!.
Can I ask are you getting extra joint pain, leg weakness and chest pain?. Your right it signifies a kind of anaemia. Hope your feeling as well as possible. Xx
Be interesting to see if your ferritin comes down after taking Methotrexate again, apologies if that’s not how it works, this is new to me.
Leg weakness def, since the early days of my health declining, noticed it happen in my regular spin classes I used to do for years, suddenly couldn’t do it anymore my legs would get fatigued so quickly and shuck. Same with other exercise I tried after. I just do yoga now at home. I had chest pain in the beginning, not so much now. Fatigue problems are a big thing I wonder if that contributes then. I’ll have to mention this chronic illness anaemia to my rhuem next May. He said he would look into why my ferritin was always high but he’s not actually done anything yet, my ESR has always not been too high like others so he that’s when he just said this could be my way of showing inflammation, but every time they do bloods I always ask for it now as I want to keep an eye on it.
I did try and search a few years back about this but only found people with low ferritin rather than high so it is interesting to see this now.
I'm glad this post has been helpful for you littlemisssunshine!. That's a long time to wait for your next Rheumy appt!. I shall definitely be doing what you will and be keeping an eye on the levels. Interesting we've got similar symptoms with it and yes the idea is to bring things under better control with the MTX!. Can I ask what lupus treatment you are on?. Hope your better under control!. Xx
Super helpful, I’ve learnt something new that’s for sure so thank you for posting. I’ve been diagnosed with Sjögren’s now not Lupus, I’m on ikervis drops and am due to restart hydroxychloroquine. I can’t say it’s managed well at all tbh, I can’t work and do a lot of things I used to be able to. Trying my best with lifestyle, diet, alternative treatment. I’ve been put on 6 monthly appointments now, was basically told on my last appointment a few weeks back there was nothing more they could help me with and that they’ll just continue to monitor me. Hope things improve back on MTX for you. X
I'm so pleased littlemisssunshine that my post has helped you. I had no idea either and have learnt a lot too.
That's tough having Sjogren's and not a lot of treatment choices. I do hope the Hydroxy helps and you don't get side effects!. I find taking it every other day helps me with the side effects and zentiva brand too is best!. I do find it helps the joints and fatigue!. I'm glad your still being monitored by the Rheumy's six monthly!. They might have discharged you but it's tough when our lives are turned upside down thru ill health!. I can't work either!. Do keep us posted how you get on and all the best. Xx
Sounds like it. Good question for your rheumatologist. They watch this closely, I think. Actually, the explanation you got is not so different than what I got many years.
Interesting about when they start to worry. Good to have perspective, right?
Yeah from what they said it was over 1000 but that’s when they suspect haemochromatosis, no mention of anything else. I unfortunately didn’t get to see my regularly rhuemy this time so when I go next I’ll bring it up again and mention this because this chronic anaemia thing is something I hadn’t heard of before x
Kay I’m going to pick your brains - my RBCs are always top of range or over.
Any idea what this might mean, if anything? I did just look but the one type of chronic anaemia I have had show up is one I can’t recall the name of now. It only showed when my GP did a thorough breakdown of my blood work over a year ago.
Honestly, this anemia and causation is way too complicated for me to understand at a deep level. What I gather is that you see both the anemia of chronic disease and iron deficiency anemia in inflammatory diseases. We don’t realize when we are being diagnosed and in follow up that they are monitoring this stuff all the time. So you likely have had anemia at different points. You might also have elevated ESR. I think they can go hand in hand.
Maybe when they see the RBC go down, they look into it further, particularly if you aren’t doing well. Maybe your GP ran extra tests to see why you were anemic? Do you have those blood tests?
Yes I have them somewhere. I never show as iron deficiency anaemic apart from this one more obscure blood result I’ll look up sometime soon. I always have a +by my RBCs which are usually 2 or 3 points over range. When I’ve looked it up it says Polycythemia vera which is a bit alarming and hopefully it’s not. I do have Erythromelagia which makes my face flush sometimes and Polycythemia vera is one of the causes of facial EM.
I just ask because I often seem to have the opposite extreme in bloods to others here - which makes me feel a bit freaky ie brings out my imposter syndrome 😉
ESR (called PV in my area - more specific apparently) is always very high - like over 100. This is why I wasn’t happy at the vascular physician’s intention to discharge me to primary care. He wrote that it’s just due to hypergammaglobulemia associated with Sjögren’s - now other colleagues and Dr P have said not so.
I always say the same about myself. Whatever I’m supposed to do, trust me, I won’t do it, medically speaking. 😅 I don’t hear your normal RBC as the opposite at all. You have your own way of showing illness. That is why context matters.
Thanks so much twitchy, I'm looking forward to feeling better as feel lousy at the mo. Hope you have as pain free Christmas as possible!. Did you see your wonderGp?. Xx
Hi Misty! Been a while since I’ve been on here. KayHimm reached out to me for comment on anemia of chronic disease and elevated ferritin. Elevated ferritin is usually indicative of inflammation. With low hemoglobin/hematocrit and binding capacity, this would be diagnostic of anemia of chronic disease. MTX can also cause low blood counts through bone marrow suppression. A good measure of weather your low counts are due to meds or blood loss would be a reticulocyte count which will help decipher if it’s a production problem or blood loss problem. Reticulocytes are baby red cells. You should have an increased number with blood loss and a low number with bone marrow suppression.
Suspicion of hemochromatosis or Hemophagocytic lymphohistiocytosis (HLH) usually is raised with ferritin in the thousands like 5000 or greater. Otherwise, most docs equate high ferritin with inflammation or infection and with low blood counts, it would be consistent with anemia of chronic disease unless any medications are causing low counts.
Sorry if it’s confusing but once you get things under control, your ferritin should decrease. I do hope the MTX provides you some relief!
Thanks so much jmiller for your very helpful info about a high ferritin reading!. It looks like it's inflammation in my case and been triggered by a reaction to the flu jab as been unwell since!. I had no idea there were so many kinds of anaemia so I'm learning and reading up on it thanks to you and Kay!. The idea is for the MTX to bring it down but I'm just pleased I've got this new inflammation marker I can keep an eye on!.It saves a lot of battling as I've had to do over the years. I hope you are well and you must be very clever knowing all this. Xx
This is wonderful news for you, getting you the treatment you have needed for an awfully long time! So pleased it's come wrapped with a Christmas 🎀. There is an elation isn't there when a reason is found. And some hope is provided. I've been interested in the responses here too. Thank you for posting.
Thanks so much panda. I've certainly learnt a lot about this and very pleased it's helping others as well . This AID stuff is very interesting isn't it?. All the very best for you.
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