[graham-cParticipant]

For 10 years I have been very relaxed about MGUS. In fact when I was in hospital just before Christmas, the year before last, I didn’t even mention it as one of my significant ailments.

Recent results and the realisation that Haematology aren’t following NICE guidelines for referral to Nephrology have caused me to question what is going on.

Like most people I imagine we don’t question what the hospital does, but I regret that I have major concerns. At my last appointment, along with the usual forms for my next blood test, two injection phials were included which I imagine are to be administered by the nurse when she takes the usual blood specimens.

To my astonishment I find that one is labelled Heparin. This was not even mentioned,let alone explained or its significance or risks discussed. It is an anti-coagulant I discover. By the by I have recently found that wounds on my legs take months to heal. I have not referred it to anyone but I would have if I had known I was being medicated to make the matter worse. It is a serious medication and I should be alerted to its prescription.

My next appointment is set to be by phone which, by experience, never happens, but it is likely to be quite challenging.

[graham-cParticipant]

I have issued an SRA in respect of the missing blood test results and, on checking historic results, I find that my eGFR results do fall within the NICE parameters for referral to Nephrology. Having said that I’m not seeking drama, so I will await the next figures in April before I decide what to do. I hope that I can discuss this in a mature manner with Haematology.

[graham-cParticipant]

My own experience has been complex and confusing. I have been deemed to have MGUS for nearly 10 years with no excitement. Appointments have been euphemistically referred to as telephonic, but no one ever calls. Since I normally get a print out of results in a month I have been relaxed about it.

The Christmas before last hysteria broke out since Haematology had tried to call me and discovered I was in hospital. No one told me what was going on and, even now, the best I could discover was that my kidney (I only have one) was in trouble.

Last year I was getting the same ‘silent’ telephone appointments but I pointed out that my lambda light chains were at 571.2 with a ratio of 0.02 and they wanted to see less of me. I also noted that where my eGFR had been steady at around 60 for years it had declined to 47 and is currently at 38.

Though I am normally placid,close to being comatose,at my last test the one thing they didn’t do was my flc. As a reward I am issuing a Subject Access Request and will do so every time I don’t get results.

The risk to me is Light Chain Deposition Disease and there are set criteria for referral to Nephrology laid down by NICE. If I have to do it through my GP I will. IF I get a phone call this time I’ll mention it.

[graham-cParticipant]

Though I do not have a diagnosis of Amyloidosis I have just read of a connection between Amyloidosis and Rheumatoid Arthritis as I felt it was too much of coincidence to have adverse blood test results and a diagnosis of RA so close together.

Since I already have diminished kidney function i do not have an optimistic outlook.

[graham-cParticipant]

I have had MGUS for over 10 years, and in that time had only one alarm that was resolved after a fresh blood test

I have had regular four monthly blood tests since then and just after the last one in late Novemner last year I went to A & E. Unknown to me my blood test had shown as abnormal and. because I was not at home to receive the telephone appointment and my telephone landline was not working (now resolved), when they discovered that I was in hosital. I think they had a panic.

I never got to know exactly what the abnormalities were as I had not spoken to Haematolgy but the doctors at A & R suggested that I had a kidney infection. Now I must mention that I lost a kidney to cancer in 2007 but my eGFR has always been around 60 for as long as I have had MGUS blood tests.

Haematology booked me in for a PET scan and bone marrow biopsy and I had every confidence that O would be all clear as I had no symptoms and. it turned out that I was indeed all clear. Unfortunately haematology lost the follow up blood test results from January of this year so I had another test. Promted by me. because for the first time I was, and am still suffering from terrible bone pain though. in view of the PET scan and biopsy results it has been diagnosed as arthritis.

The latest blood test shows serum free lambda light chains 509.3 and kappa to lambda ratio 0.01

Annoyingly the blood test report plays down the flc results snd refers to the flc as a ‘slight’ rise. No GP will give any significance to the flc result.

The arthritis appeared out of the blue at the beginning of March this year. How unlucky is that ?

I am having another blood test this week and that alone is significant, since I have gone from blood tests every four months to having three in four months.

I could add more but this is enough for now
I must ad.it that what I have read about Lsmba flc is not very encouraging but I’ll let you know how my results turn out

[graham-cParticipant]

I have been diagnosed with MGuS for perhaps six or seven years. I used to be quite fixated on the blood test results but not so much now. The one thing that you say that is revealing is that your next blood test is in three months time. My blood tests are at 3/4 monthly intervals and I consider that this is for those in the lower risk category, though there is no way to determine your own personal path with this condition, I take it that I have nothing to worry about as long as my blood tests intervals remain at this level. I once did get a call once after one blood test telling me to come back immediately for another test, but I felt so well I wasn’t concerned, and it turned out to be nothing. I don’t even get an appointment at Haematology nowadays and they are supposed to ring me with the results, but rarely do, which doesn’t bother me since I get a latter from my GP in due course.

At one stage my results had fallen so low I thought that i would be discharged, but that didn’t happen. Rather like investments, they can down as well as up. The important thing is that you’re being tested but, until it spikes (if it ever does), it’s simply a matter of waiting and getting on with life. I’m a spritely 68 year old and get plenty of aches and pains from time to time, but nothing I can blame on Myeloma. The MGuS blood test is so all encompassing, it’s quite useful since I lost a kidney to cancer 13 years ago and enables me to check my eGFR is, but even that has improved.

Maybe I’m lucky, but I keep an eye on the results and let Haematology do the worrying.

• This reply was modified 3 years, 9 months ago by  graham-c.

[graham-cParticipant]

Hi misswoosie

As regards paraprotein levels I’d use the analogy of people being measured for radioactivity, and we all have some level of radioactivity in our bodies since it’s in the environment all around us, especially in the rocks on which we live. Those living in areas with granite outcrops will be more radioactive than those living elsewhere.

The point being that ideally no one would have any detectable radioactivity in their body The ideal and perfect level being zero but that is unachievable. The same applies to paraproteins. You don’t want them but a large number of the population do, as I do too.

The important issue is the level and I can’t stress how important it is for you to know your results if you want some understanding of your own condition. The level itself is important but, beyond that, what the hospital will be most watching out for is significant change and trends. I have my results in a list over the part five years. It’s not that I’m smart, but I had kidney cancer ten years ago and I wasn’t told things, I was told things that weren’t true and it went badly wrong. I learned my lesson. Saying that I am not rude or aggressive with medical staff because of he past. I can achieve a lot more with charm and if you harass doctors they will ‘clam up’ on you.

My blood test results are my ‘comfort blanket’ and they give me the confidence to be calm and know what I’m talking about. As I write I am waiting for a call from the hospital with my latest results and I’m worried they’ll let me down, but I can handle that and remain charming too because I can submit a ‘Freedom of Information Request’ on them and they are legally obliged to  send me the results.

As regards eGFR, since I lost a kidney ten years ago, that is my specialist area, so to speak. My eGFR is in the 60’s and it has dipped into the 50’s before now. By knowing my figures I was able to tell the hospital/GP that my results had been falling so constantly over a period that under NICE rules I should be referred to Urology but, since 50 itself was no threat to me I chose to wait and see if results improved, and they did. I don’t want unnecessary treatment and, by knowing my figures, I could make that judgement.

As with paraproteins, what counts is the level and progression of test results. I have found it very beneficial to know my own results and track them and it has also meant that I don’t have to pester the hospital without good reason. The same with Free Light Chains.

Oh dear. A letter I have just received suggests that i won’t be receiving a call or my test results. They must be yearning for one of my FoI Subject Access Requests.

• This reply was modified 7 years, 3 months ago by  graham-c.

[graham-cParticipant]

I am at five and a half years of being MGUS and I could go another 10 years with no change. There isn’t any way to predict other than by having continuing blood tests. The progression rate is really quite small. Last year I had a small blip that caused some excitement but they took another blood test and it turned out simply to be an isolated blip so, even if you get one set of abnormal results it isn’t necessarily the start of full blown myeloma.

It’s ironic that the less frequently you’re seen is an indication they don’t see you as being at greatest risk of ‘conversion’. I get bloods done once or twice a year and get results over the phone.

I just had my bloods done this week and I do feel a little nervous but, what will be, will be and chances are there is no change. If I didn’t have the tests I know that would ignore problems until it was too late. At least this way it takes the responsibility out of my hands. They’ll tell me and it’s in their hands.

[graham-cParticipant]

In simple terms you could say that osteopenia is to osteoporosis what MGUS is to myeloma.

My mother has osteoporosis which is how I know about the DEXA scan. Perhaps your GP could recommend some simple dietary changes, but always keeping in mind your kidney situation. I take a vitamin D supplement but, in the UK that’s fairly standard and most people have a deficiency of Vitamin D.

Free Light Chains are something to keep an eye on and they will be measured as part of any myeloma blood test. It’s always a case of looking for significant results or unusual or continuing changes.

I’m with Leicester Royal Infirmary and I feel confident in them even though I receive minimal attention. Reassuringly that’s what my figures indicate is appropriate for me, and long may that remain the case.

Last year I had what they term a ‘spike’ and the hospital reacted very quickly but it simply turned out to be an isolated result, but it showed me that they are there watching over my results.

Best of Luck with the BMB.

[graham-cParticipant]

One quick point DoylerOz.

Have you considered a DEXA scan ? That measures bone density and seems appropriate considering you have mentioned fractures. Just because your symptoms haven’t led to a diagnosis it doesn’t mean that you are imagining them. Age, sex and other details determine if it’s appropriate for you but no reason you can’t discuss it with your GP.

[graham-cParticipant]

I have been MGUS since January 2012 and the paraproteins have varied between 3.00 and 10.30 in that time. One similarity we share is that I have had kidney problems relating to kidney cancer in 2007 and I now have just the one kidney. One good thing is that the blood tests for MGUS include eGFR which is effectively a reflection of kidney efficiency though, like paraproteins, unless the figure is dramatic then it’s a matter of keeping a watchful eye on trends. My eGFR has varied between 54 and 73 in that time.

I have two blood tests a year for MGUS and I get the results by phone and this procedure is an indication that I am at low risk and thus a low priority and I am happy with that. I consider it the best of all worlds – low risk, I avoid treatment but I am still monitored.

One thing you could also ask about is free light chain levels as they can be a separate risk to anyone with kidney weakness. My figures have varied between 109 and 195.

At 64 I have plenty of aches and pains in joints and bones and I know that I have done serious damage to my lower back through sporting endeavours in younger days, but I think I can determine what is caused by the ravages of time and what isn’t.

[graham-cParticipant]

At age 64 I have been diagnosed with MGUS for over 5 years. A diagnosis of MGUS isn’t a death sentence or a reason for undue pessimism. As much as I’d prefer to be without it, I do get regular blood tests taken which would highlight any unusual results. For me it is every four months as I accept that I am at low risk. Perhaps next time it will flare into active myeloma but no one can live their lives governed by what may happen.

Prior to becoming MGUS I lost a kidney to kidney cancer (unrelated to MGUS) and you need to avoid thinking all symptoms you have must be down to MGUS or myeloma. Strictly we shouldn’t have any symptoms at this stage, though I do have a reporting form from the hospital in case I do. After five years of steady results I have lost any obsessions I may have had initially. I have my blood test and they phone me the figures and I note them down. I have every figure since I began. I don’t actually visit the hospital which is good for both of us. The results I get act as my ‘comfort blanket’.

In younger days I was very active in high impact sports and my back is a wreck, so I couldn’t possibly put any discomfort or symptoms in my back down to myeloma. No one can foresee what lies in the future of any MGUS person and I wouldn’t want treatment until it is necessary.

I am in the ideal situation and I trust that you will be equally fortunate. I actually look forward to having the blood tests nowadays. At one stage I thought they were going to discharge me and then I had a ‘blip’ late last year, which turned out to be nothing.

[graham-cParticipant]

It would be wrong for me to advise you or make any recommendation or diagnosis but my experience may give some perspective to your situation.

I am a male of 64 years age and I have been MGUS for over five years and I currently have blood tests every 4 months with a call call to confirm the results to me which I make a note of. I consider that I am in the lowest level of risk and I have not received any treatment and I am quite happy with this. Though the level of paraproteins is significant, what will always be of concern is when there is a steady and sustained increase over a period of time. MGUS itself is not considered a health risk, other than the risk of it developing into full blown myeloma which can only be ascertained by long term monitoring.

For you information the readings I take are IgA Paraproteins, eGFR, Lambda FLC and Kappa/Lamda ratio. The IgA in paraproteins and Lambda in FLC’s are specific to my MGUS. It’s handy if you ask for the largest paraprotein figure and ask them what type that is and the same for FLC’s (free light chains) and then you can speak their language in future. I have five years of figures.

Last year my paraproteins went up to 10.3 and the hospital got excited but I know other people here have had much higher readings. It seems that some other background tests came up as abnormal and, combined with the small spike, got them excited.

If there is a point to be made, it is that if you have significant symptoms and your MGUS is steady and, using the word designed to offend patients – ‘unremarkable’, then possibly the underlying cause lies elsewhere. The background tests apparently meant that I had a poor prognosis but, since my paraproteins has returned to normal, it was impossible to say to what the prognosis related.

Personally, as long as I remain MGUS, then if I have symptoms that I can’t put down to myeloma then I will go to my GP with it as a new ailment.

My last results were Paraproteins 4.1 FLC’s 157.6 Lambda/Kappa ratio 0.05 eGFR 63

I only mention them so that you have something to use as a comparison. They are ‘unremarkable’ but significant physical symptoms (which I don’t have) would make a difference.

[graham-cParticipant]

I’ve been MGUS for 5/6 years and nowadays I get blood tests every 4/6 months with ‘virtual appointments’ which means that I get basic results by phone. I’ve had the odd small spike but overall I know that my results are low level and don’t merit more attention. I am happy with that and am thankful that I have been fortunate. I’m being monitored and can’t ask for more.

Having a diagnosis without receiving treatment can play with your mind, but actually it’s a good thing. If and when my time comes I doubt that treatment will be nice and it’ll be a sign that the illness is progressing.

Instead of dreading results I look forward to learning that I don’t have anything to worry about.

[graham-cParticipant]

I wonder if it’s not so much a different method of measuring pp’s but more a different way of interpreting and reacting to changes in results. Just something to consider.

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