 Reading about what the different blood test results meant was part of the big google marathon. In the beginning, it was mostly about finding something that suggested that the diagnosis might be a mistake. That the test results were low, that they could be due to something else. Eventually, the unstoppable need for information was probably more a about feeling some kind of control. Searching for information became a place to put my focus when it felt like everything related to health and my own body was falling apart. An attempt to understand where on the lupus spectrum I was. I still ask for a copy of the test results from my check-ups. Yesterday it was time for a new round of blood tests and I asked for a printout of the blood tests from last month. Looking at det result from the antibody tests made me smile all the way out of the hospital.
There are a lot of test results on the printouts, so the ones I list below are just some of the ones I have had a curious relationship with this year. This must not be understood as me trying to interpret the blood test results in any way. I leave the interpretation of the test results to the doctor. The current status is that the doctor calls me if something is starting to look worse. But I still like to see the results on paper,that they are improving. That I am closer to the reference range than I was last time. What follows below are a lot of numbers, test results. But since this was the kind of info I tried to search for when I was diagnosed, I choose to share. ANA ANA stands for "Antinuclear Antibodies" this test screens for whether there are auto-antibodies that can attack the cell nucleus within the body's own cells. The test is either positive or negative. If this test is positive, it means that there are auto-antibodies in the blood, but it doesn't necessarily mean that you have a disease. Healthy people may have a positive ANA test, but if you have SLE, it's very rarely negative. A positive test is followed up by testing for different subgroups. The different subgroups are linked to different autoimmune diseases and give an indication of what is being attacked in the body. Anti-dsDNA (reference range: 0-10) This antibody is quite specific for SLE, which means that it is very rarely positive if you don't have SLE. This value can fluctuate and indicate rise or fall in disease activity. This antibody is one of the risk factors for developing lupus nephritis and vasculitis (inflammation of the blood vessels). When I got sick in December, the result was 269, while at the end of April it was down to 23. The last test from September shows that this is down to 17, which means I'm pretty close to the reference range !! anti-SM. (Reference Range 0-7) This antibody is very specific for SLE. 5-30% of those who have lupus have this antibody. This antibody is associated with the involvement of a number of organs and symptoms including kidneys, vasculitis, serositis (organitis) and Ryanaud's. The amount can according to this article say something about the disease activity, while according to Lupus Encyclopedia it doesn't. When I got sick, the result was 254, while at the end of April it was down to 25, now in September it's down to 13. SSA / Anti-Ro (reference range 0-7) this antibody is associated with Sjögren's Syndrome and SLE, but approximately 60% of those with Sjögren's syndrome have it as a secondary diagnosis of SLE, rheumatoid arthritis or systemic sclerosis. SSA increases the risk of rash and photosensitivity. In addition, it increases the risk of inflammation of the lungs, liver and heart. The antibody can pass through the placenta and cause heart block in the fetus. The antibody is also linked to the neonatal lupus rash. The amount is not related to disease activity and for me this has been over 240 this whole time. SSB / Anti-La (reference area 0-7) this is always mentioned together with SSA and is also linked to Sjögren's Syndrome. It carries many of the same risks including heart block in the fetus and neonatal lupus. Most often this is positive together with a positive SSA and less often on its own. When this is positive, there is an increased risk of developing Sjögren's syndrome over time. For me, this is negative. RNP antibody (reference range 0-7) This antibody is not as specific and appears in connection with several rheumatic diseases such as Rheumatoid Arthritis, Ryanaud's phenomenon and Mixed Connective Tissue Disease. It's often used to diagnose MTCD, as high rashes are often associated with it. When Anti-Sm is positive, this one is usually also positive. In my case, I had 29 in December, in April it was 10, while in September it was negative! Antiphospholipids are linked to a disease called Antiphospholipid Syndrome. This syndrome causes blood clots and can lead to miscarriages. Having some of the antibodies doesn't mean that you have the syndrome, as long as you have no history of blood clots and miscarriages. However, the fact that the antibodies are present increase risk for these kind of events and in the case of, for example, pregnancy and long flights, blood thinners may be needed. To confirm a positive result it must be tested twice at 12-week intervals. Each of the antibodies increases the risk on their own, but if you have all three antibodies and higher results the risk goes up. The fact that they are present means there is an increased risk that clots may form, it doesn't mean that it will happen. Nor does it say anything about how often or how serious they become. Lupus anticoagulant (LA) (reference range 0.68-1.34) - The risk in connection with pregnancy is highest if you are diagnosed with lupus anticoagulant or have all 3. On this I have 1.02, meaning negative! At this point it feels like I have to be happy for all the antibodies they don't detect. Anti-cardiolipin IgG (aCL) (reference range <20) The antibody affects the body's ability to regulate coagulation in the blood so that clots form. I have had a result on this one twice, with 41.4 in February and 35.7 in May. According to the doctor it's not a high titer, but it is a positive result with all the precautions it entails. From 10-39 is considered a weak positive according to this lab handbook. Beta 2 GPI IgG (aβ2GPI) (Reference range <20) When diagnosing APS, this is more specific than the 2 above, and in some cases the only one that is found. I had a slightly higher result with 91.2 in February and 85.7 in May. Complement C3 and C4 (reference range C3: 0.83 - 1.93, C4: 0.15-0.57) The complement system is proteins in the immune system that help the antibodies and the white blood cells fighting invaders. One of several tasks of this protein is to attach itself to and label infectious invaders so that the immune cells can find them and attack. They are usually inactive and are activated by infection. In lupus, low or declining values can be a sign of increased disease activity, since these are consumed when activated. Therefore, C3 and C4 are part of the tests that are monitored to monitor disease activity. These are very small numbers, so for my own part I just register that they are both higher than they were in December. SR (reference range <20): Blood drop (SR) indicate there is an inflammation in the body and how strong it is. It's a measure of how many mm the blood has sunk in the test tube in one hour. With inflammation, the cells clump together more and sink faster / further down. The higher the number, the stronger the inflammation. By comparison, my tests in December showed 44, down to 15 in April and now 7 in September. B-HbA1c (Reference Range 27-42) Long-term blood sugar. Since I am on prednisolone, my doctor monitors my long-term blood sugar to see that I am not developing diabetes. This was especially important when I was on the higher doses. I already have a close relationship with blood sugar and the effect of insulin through my sister who has had diabetes since she was little. Long-term blood sugar fluctuates a bit, and it may look like the effort I put in to limit sugar intake was reflected in March when I was down to 33 compared to 39 in December. And when I eased up a bit, it was up to 41 in June. Now in September it was 36, but since I am now down to 5mg prednisolone, I don't worry as much about blood sugar as I did in January-March. Creatinine (reference range 45-90): Creatinine is a waste product from the muscles that the kidneys filter from the blood and into the urine. If the kidneys don't work properly, the level in the blood rises. There are some variations on what is normal for a person, among other things, muscle mass, but it gives an indication that there is something wrong with the kidneys. In December this was increased up to 122, while in April and September I was within the normal with 74/75 e-GFR (Creatinine) (reference range> 80) eGfr stands for "estimated glomerular filtration" rate and says something about how effectively the kidneys filter the blood. It's the creatine level put into a mathematical formula that takes into account age, gender and race. In December, this dropped from 77 to 49 during the week after I had taken the first tests at the GP. 49 means slightly to moderately reduced (45-59). Combined with the other results, I was quickly admitted for kidney biopsy. In April and September, on the other hand, this test was normal again with 89/87. Leukocytes (reference range 3.5-11.0) Leukocytes are a measure of the number of white blood cells. This test result appeared on my radar this autumn when I was told that I had falling white blood cells. This is common in lupus and is called leukopenia. Leukopenia can be due to both increased disease activity and a side effect of the medicine. These have fluctuated slightly from 4.4 in December, down to 2.8 in April, up to 3.8 in June, 2.3 in July and 2.2 now in September. Sources: The Lupus Encyclopedia www.ncbi.nlm.nih.gov/pmc/articles/PMC4475431/ www.orgentec.com/en/products/alegria/Autoimmune+Disease+Diagnostics/Rheumatology+Diagnostics/ORG+210.html tidsskriftet.no/2021/05/klinisk-oversikt/svangerskapskomplikasjoner-hos-kvinner-med-systemisk-lupus-erythematosus Https://nhi.no/sykdommer/infeksjoner/undersokelser/blodsenkning-sr/ https://www.hss.edu/conditions_understanding-laboratory-tests-and-results-for-systemic-lupus-erythematosus.asp Https://labtestsonline.org/tests/cardiolipin-antibodies
0 Comments
 The butterfly rash is one of the most characteristic symptoms of Lupus. It´s also called "malar rash" where malar is the Latin word for cheekbone. About half experience this rash that spreads over the cheekbones and the bridge of the nose. For some, it´s also the symptom that ultimately points to Lupus as the correct diagnosis. The rash is a sign of active disease or increased disease activity and is not permanent. It often appears in connection with sunlight and those with photosensitivity (SSA antibodies) are more exposed. It´s the most sun-exposed points on the face that are affected, which can give the butterfly-like shape. The butterfly is therefore a frequently used motif in connection with lupus. The same rash has given rise to the name of the disease, but then with reference to another animal. Lupus which is Latin for "wolf" and erythematosus which is Greek for "red". The term «red wolf» referred to the rash that could resemble a wolf bite. The wolf is perhaps a less pleasant, but more appropriate association with the aggressive side of the disease.
This butterfly has unfortunately flown a little too carelessly in the sun, and needs to recharge in the shade. Yesterday's check-up with the GP led to doubling the prednisolone dosage and the appoting at the rheumatalogist was moved forward from August to tomorrow. There is something schizofrenic about explaining to GP the symptoms you are worried about, while at the same time you´re trying to explain them away in the same sentence. But the GP listens carefully, listens to me, listens to my heart, lungs, and measures blood pressure. An ECG is taken which comes back normal. What I´m describing with the rashes and mouth ulcers indicate increased disease activity. It feels like a step back, but I'm in safe hands. It´s reassuring and comforting to know that I´m taken so good care of. Fingers crossed that it´s a false alarm. Sources: https://bindevevssykdommer.no/sle-2/hud-ved-sle/ The Lupus Encyclopedia  "You can not control the cards you're dealt, just how you play the hand" - Randy Pausch It's Friday and we're playing Texas hold´em. Feeling pretty optimistic about the cards I get dealt. Of course I have to stay in this round! The first 3 cards are dealt. Bummer, not even close to the ones I was hoping for. The pot is raised. Hand reaching for more chips, there are still 2 cards left that can turn this game around so I'm not out yet.. The phone call I got before this weekend was a new twisted card. It was the rheumatalogist that called back with test results on the second antiphospholipid test. The test that had to be confirmed after 12 weeks. Antiphospholipid antibodies are antibodies that react with fats or lipid in the blood and lead to an increased risk of blood clots. There are 3 types of antibodies you test for: Lupus anticoagulant Anti-cardiolipin antibody Beta-2 glycoprotein antibody About half of those who test positve for these antibodies have blood clotting events. The antibodies can also be found in healthy people, and they estimate that 1-5% of the population have such antibodies. This is why the results must be confirmed twice at 12-week intervals, as it may be a temporary positive. About 40% of those with SLE have such antiphospholipid antibodies, but there is also a separate diagnosis associated with these; Antiphospholipid syndrome (APS). Antiphospholipid syndrome is often detected in connection with thrombotic events and recurrent miscarriages. Mentally, I am already prepared that it is unlikely I will get a different result this time. So it's not a big blow when the rheumatologist tells me that the results are pretty much the same, I've tested positive for 2 out of 3 antiphospholipid antibodies. On a positive note, the titers are not that high and I have never had any blood clot events. However, these antibodies means a significantly increased risk of blood clots in risk situations. Pregnancy will be such a risk situation and there will be an increased risk of miscarriage. Therefore, I will probably be put on both acetylsalicylic acid and Fragmin (blood thinner) if I get pregnant. When I first heard about the antiphospholipid antibodies, I was devastated. Today, as I'm getting the confirmation that the tests are in fact positive, I just think of it as information. Information means I can actually take precautions in risk situations. Like pregnancy, and flights over 4 hours. It's a tough card to get dealt, but I still have chips and an ace on hand. Sources: https://www.revmatismesykehuset.no/behandlinger/antifosfolipidsyndrom https://revmakompendium.pressbooks.com/chapter/antifosfolipid-antistoff-syndrom-apl/ https://nhi.no/symptomer/blod/antifosfolipid-syndrom/ https://sml.snl.no/antifosfolipid-antistoff  June has finally taken pity on us with some long-awaited sunshine and I am embraced by the warm summer air as I leave my cool and temperate workplace. I'm going for a swim, the first of the year. The bikebag is packed with summery ingredients: a large towel, bikini, a basket of strawberries and a book. At the top lies what will be this summer's most important accessory for Miss Lupus, sunscreen, sunglasses and a hat.
"Be careful with the sun and use high spf!" This has been one of the most frequent mantras from the doctors. In addition to avoiding stress, this advice is repeated everywhere when reading about lupus. Because while many rheumatic conditions improve in the sun and warmer climate, with lupus it's the opposite. Particularly high levels of SSA / SSB antibodies can cause photosensitivity and sunrashes. When the skin is exposed to UV rays, cells are damaged, and the immune system initiates a clean-up job to remove the damaged cells. This is something that happens in everyone, but in lupus patients, the cleaning cells don't work fast enough and the damaged cells is left lying around a little too long. The immune system identifies them as invaders and launches an attack to avert the danger. As a result, it's not necessarily just the skin that is affected by sunlight. Too much sun can cause other symptoms such as fever, joint pain, fatigue, etc. to flare up. Worst case scenario, too much sun can lead to internal organs being attacked. In addition, some of the medication used to treat lupus enhance the damage from the sun. Plaquenil, which is the basic treatment, makes you tolerate the sun less, while immunosuppressive drugs such as Imurel can increase the risk of skin cancer. As with everything else in lupus, there are individual differences of how much sun is tolerated. There are those who have SSA and SSB antibodies who never get sunrashes and don't experience flare-ups, while some can be affected by UV light from lamps inside. I don't know exactly where I am on this spectrum yet. I have noticed that I don't tolerate the sun like I used to. Especially the rashes on my cheeks seems to flare-up and turn red after I have been in the sun, and my eyes feel a little dry and sore in the evening. Sun rashes was one of the earliest symptoms, so you could say I'm on high alert when it comes to the sun and skin these days. But so far so good as long, as I use high spf regurlarly and protect myself with sunglasses and cover my head. Wearing your coolest hat and enjoying strawberries in the shades after a swhim is not half-bad either. Sources: https://bindevevssykdommer.no/sle-2/ https://revmakompendium.pressbooks.com/chapter/systemisk-lupus-erytematosus-sle/ https://www.lupus.org/resources/uv-exposure-what-you-need-to-know#  The arm is gently twisted behind the back and my hand is sliding into the chalk bag. A sprinkle of chalk sticks to the forehead as the arm returns to the wall. My fingers find their way back to the crimp and the two upper joints are bending slightly for a better grip. The arm is stretched slightly to relieve the pump building up in my forearm. My breath is heavy and just like me, the pulse is on it's way up. Up the wall, move by move. A finely tuned machinery of tendons, joints and muscles, working together to move this rheumatic towards the top of the wall.
Rheumatic. The word is charged with pain, pain from joints and muscles. When I hear the word rheumatic, it instinctly produce an image of slightly crooked and sore hands, arms and joints. Rheumatism is something I associate with age, something you get when you're older. But as I looked around the waiting room waiting for my first appointment with the rheumatologist, it struck me that many of patients in the waiting room were not very old. Not particularly crooked either. I began pondering what their situation was, because most of them looked pretty healthy on the outside. Still, like me, they were sitting in the waiting room at the Rheumatalogy ward. And that was when it struck me, am I a rheumatic now? Maybe it's me who needs to update my notion of what a rheumatic actually is? SLE is a rheumatic disease, and there are actually over 200 different rheumatic diagnoses. In Norway, there are about 300,000 living with rheumatic disease. Quite a few, and there is a separate interest organization for those with such a diagnosis, the Norwegian Rheumatism Association. Examples of rheumatic disease: SLE Rheumatoid arthritis Bekhterev Systemic Sclerosis Fibromyalgia Poliomyocyte Osteoarthritis Many of the rheumatic diseases are chronic autoimmune diseases, while some are diseases / conditions that come with age (osteoarthritis) or overload (tendonitis). The rheumatic umbrella is large and is therefore divided into several subgroups. Lupus / SLE is in the subgroup called systemic connective tissue diseases. In connective tissue diseases, the immune system attacks the tissue found in and binds the organs together. My slightly simple opinion that rheumatism is the same as gout is in other words not entirely true. But the common denominator is ailments from the musculoskeletal system, such as pain and stiffness in joints and muscles. Sometimes you take it for granted that the body will always function as you have been used to, but it is not a matter of course for any of us. The biggest upheaval with the diagnosis of lupus is the new way of interpreting the body's signals. They automatically go through several filters before they can be dismissed as everyday minor ailments. Is the stiff neck a result of a sleeping position or the recently adjusted dose of prednisolone? That point in the thigh, it can not be the beginning of a blood clot, because how does a blood clot really feel? Are the shoulders sore due to the backpack this weekend or is there something else that has started to smolder in the muscles and joints? Maybe I probably feel a little too good after a while. Can not completely shake off my fear that I will dismiss something serious as a trifle again. I find solace in the fact that I am followed up very well by the doctors. If the disease begins to recur, it will be detected by the regular check-ups and blood tests. Strictly speaking, it can not be too bad right now as I am hanging here in the wall. But to be on the safe side, I might drop the housework today! Sources: Gran, J. T. (2008). Definition and classification of rheumatic diseases. Norwegian Epidemiology, 18 (1): 3-4. https://nhi.no/sykdommer/muskelskjelett/giktsykdommer/leddgikt-symptomer/ https://sml.snl.no/revmatiske_sykdommer It's 30 minutes before my phone consultation with the rheumatologist. Last check-up, my test results were so good that I don't need a physical appointment. While I wait for the clock to strike 10:00, I google what the most common finding in kidney biopsies in lupus patients are. After reading the abstract from two studies I find (Wen, 2011 and Kar & Ganiger, 2019), I'm mentally prepared that the most common finding seems to be class 3 and class 4. Of which class 4 is supposed to be the worst. Still, I have an underlying feeling that I won't get any really bad news today either. I'm feeling great, and my test results were so good last time, it would be weird if this has suddenly changed dramatically. But I try to keep my optimism in check, before these chek-ups. «Drammen Hospital Rheumatalogist». The call lights up the phone screen. After a 20-minute conversation, I call my mom smiling. The doctor is very happy with the test results and the disease activity is now even lower than last time. Regarding the kidney biopsy, there were not enough glomeruli in the tissue sample, so they could not classify the nephritis. The glomeruli are tiny clusters of blood vessels of which there are about 1 million in each kidney (large medical encyclopedia). The clusters filter and purify the blood and this is where the infamous autoantibodies can decide to settle down and make havoc. They study these clusters under a microscope and look for changes. Although there were not enough of these to classify the nephritis, it was enough to confirm the lupus nephritis diagnosis. But, since I respond so well to the medication and the tests are back normal again, I don't have to worry about the kidneys, nor do I have to take a new biopsy. Protein is no longer leaking into the urine and it all looks very promising! In other words, there is every reason to smile! So I can consider myself healthy for now and we'll just have to see how it develops. The next check-up will be in Drammen in 3 months. The most important thing going forward is protecting myself from the sun and avoiding stress. "Poison stress is" - Yoda  Sources:
Kar, D. P. & Ganiger, V. C. (2019). Renal biopsy findings in lupus nephritis and their correlation with clinical and biochemical parameters. Kidney International reports. VOLUME 4, ISSUE 7, SUPPLEMENT, S317, JULY 01, 2019. https://www.kireports.org/article/S2468-0249(19)31017-4/fulltext Wen, Y. (2011). Renault biopsy findings in new-ondet systemic lupus erythematosus with clinical renal disease. In. Urol Nephrol, Sep; 43 (3): 801-6.doi: 10.1007 / s11255-011-9911-3. Epub 2011 Feb 20. https://pubmed.ncbi.nlm.nih.gov/21336956/ These are the doctor's own words in the medical record, "Excellent general condition, healthy appearance". This time I'm actually getting great news in my check-up appointment. Finally!! The doctor is smiling and seems happy as well. It looks like my body tolerates the medication and it's working. My hair is growing back and there are no bald spots showing through. I have lost weight instead of gaining weight, my blood sugar has remained stable, and the infamous moon face never appeared. There's no results from the kidney biopsy yet, but kidney function is normal so I will continue on the same medication. At the previous check-up, the disease activity was classified as moderate, when I ask this time it is low. Disease activity is low !! I have dreaded this check-up. It has felt like there's unpleasant surprises around every corner of this disease, so I was nervous about what was waiting for me this time. But this time, it's all good news. The next check-up will be in 8 weeks and can be done over the phone. That must be good sign as well! I 'm all smiles as I'm skipping out from the Rheumatology ward. I'm healthy!  Foto: Guttorm Wiik
It's early morning at the hospital check-in post and I'm greeted by an energetic lady. She has a hospitalbed ready for me, but need to take a few blood tests first. They need to see if there is anything in my blood indicating an increased risk of bleeding. The waiting room looks a lot like of a living room with large, deep sofas, candles on the tables and pictures on the walls. A muted TV is showing the morning news, summarizing yesterday's covid-19 numbers. I wait for a few minutes before a nurse shows up to take the blood tests. A few minutes later, the energetic lady comes back and measures my blood pressure. 117/75 which is good. If it was over 140, it would have been too high to take a biopsy, she explains. Since I need go to the bathroom, she gives me a cup to collect a urine sample. Nephrologists love urine samples, she says with a smile. I have been fasting since midnight so I am relieved to hear that the kidney biopsy is at 10. The small glass of water I was allowed with my medication this morning was not nearly enough. A slight throbbing in the head and stomach makes me look forward to getting something to eat and drink when the biopsy is over. The biopsy itself is at 10:00 and will take about an hour. While I am lying and waiting, I see 2 surgeons pushing a small bed that must be a small child who has just had surgery. It sort of puts my whole little biopsy procedure in perspective. Right now at this very moment, small children are being treated for cancer and are being operated on. And here I am, a grown woman dreading a little pinch in my muffintop. Soon enough it turns out that a kidney biopsy really is nothing to be afraid of. First, they find the best spot to take the sample by taking pictures from several angles. While this is being done, I am asked to take a deep breath and hold it until the doctor signals. I will be doing the same when the sample is taken. Finally, they have located the sample spot, and I'm lying on the side. The spot is washed with a liquid and a cloth and something that feels a bit like a heavy frame is put on top. A syringe with sedation enters the flesh and I feel a small sting. The doctor explains that there will be a clicking noise when they take the sample and demonstrate. Then they start the procedure. There is no pain, just a strange feeling that something is going on there. Then I am asked to take a breath and hold it. "Click" and I still feel nothing. On sample done. They take another sample is taken and the nephrologist comes to check the samples. I overhear that they can take 3 samples, maximum 4, but the nephrologist is happy with the 2 samples. There is a little bleeding after the 2nd sample and they book me in for an additional check-up in 3 hours and some extra blood tests. I am assured several times that this is something that can happen on occasion that there's nothing worry about. I am not allowed to eat until after the 2nd check-up, but I am allowed to drink water. Thank god, because I am terribly thirsty! At 11:00 it's all over and now I'm on 24 hours of bed rest. The reason for this is to keep my pulse and blood pressure low to keep the bloodflow to the kidneys at a minimum. In other words, I don't even get to go to the bathroom, which means that I have to go in a bowl in bed for the next 24 hours.  Freshly painted nails for my kidney biopsy The calendar has just flipped over to February and it's time for a new check up at the rheumatologist. I'm a month into the induction treatment and it seems like this is going in the right direction. I´m feeling increasingly better and this weekend I even went skiing for 10K in -13 degrees, without the stinging sensation in my chest. This time I´m cruising to Drammen on my own, no one has to drive me. The only thing I'm a little nervous about today is the result of the antiphospholipid test that´s been taken. Last check-up, I was told that I have an autoantibody (SSA) that can potentially cause a heart blockage in the child during pregnancy. But I have discovered that there is only a 2-3% increased likelyhood of this happening. So if I get a negative result on this antiphospholid test, then it would definetly feel like I´m out of the woods for now. While I wait to be called, I read through the questions I have written down in before this apointment. I am particularly curious about disease activity and where I am on the scale. It seems that there are several ways to measure it, but the word SLEDAI (SLE disease activity index) has appeared the most times. A score is set from 0-105, with 1-5 = mild / low, 6-10 = moderate, 11-19 = high and anything over 20 = very high. This time I get through the appointment without shedding a single tear, but unfortunately it turns out that my blood test results don´t quite match how I feel and what I expected / hoped to hear .. Although my general condition is good, they are not completely happy with the test results for my kidneys and the inflammation has not gone back as much as they would have liked. The nephrologist has therefore recommended that a kidney biopsy should be performed to classify the inflammation and assess whether the medication I am currently on is sufficient to treat it quickly enough. I feel like I'm collapsing in my chair. Turns out these woods Are deeper than I think they are. Of course, it also turns out that the antiphospholipid test is positive. This result is not confirmed positive, until a new test has been taken in 12 weeks, ie there is still hope I will get a different result. When I ask about disease activity, I get to see the form used to assess this. When I came in this Christmas, the disease activity was high, while I am now down to moderate activity, and that is for the most part because of the kidney situation. I guess the ride back home won´t be all puppies and rainbows after all .. Source: Mosca, M., Merril, J. T. & Bombardieri, S. (2007) Assessment of Disease Activity in Systemic Lupus Erythematosus.   This morning it's worse than ever. My arms, hands and neck hurt so much that even the slightest attempt to move makes me nauseous. I manage to get up to a seated position in and have to wait a few minutes before I try to put on a sweater. There's not much left resembling me as I drag myself down to the kitchen to get my first dose of the day. I have to use both hands to get a glass out of the cupboard and swallow the pills. In a couple of hours they will start to work and the body will start to feel a little more inhabitable. I got a new appointment at the rheumatlogist today, so by the time we approach Drammen my body will hopefully be a little less crooked and stiff. But in the meantime I have to go to the bathroom. It´s a humiliating moment when I realize that I might have to ask my mother for help, to wipe myself. It's a feeling of total helplessness. Fortunately, I finally manage to force my arm just far enough, but the movement makes me incredibly nauseous and dizzy. It feels like I'm about to faint and fall off, ending up in an equally humiliating position. 2020 sucks. Fainting on the toilet would be the perfect ending to this shitty year. As we approach Drammen, the medication has started to work and I am finally starting to feel a little better. There's a new rheumatologist I'm talking to this time. Despite the shitty start to the day, I am feeling optimistic and that my luck has turned. So I might just as well ask her if there is any possibility that this is not lupus. She assures me they are certain of the diagnosis. Parts of me have been so certain that there's a mistake somewhere. That maybe my blood tests have been mixed up with someone elses. That my test results miraculously have returned back to normal. I have not quite accepted that I suddenly have a chronic illness. It is slowly dawning on me that this is actually something I have to live with and that the miraculous news I am waiting for will never come. It turns out that the level of protein in the urine is rising, indicating that I have lupus nephritis. Meaning there's inflammation in the kidneys, and the kidney function is affected. Therefore the dose of prednisolone must be doubled. All the side effects of prednisolone are still fresh in my mind, making me whimp. In addition, I will be put on another immunosuppressive medication to treat the inflammation in the kidneys. Since I want to get pregnant and have children, I am prescribed Imurel. "It can cause some cosmetic side effects, such as warts and brown spots in the skin." A loud grunt accompanies the words coming out of my mouth. "Warts? Am I going to swell up like a balloon and get warts?" I hear how silly it sounds as the words leave my mouth. "The most important thing now is that you concentrate on getting well" her voice is firm but compassionate and I feel a little stupid worrying about weight and warts. Apart from the joint pain and stiffness, I don't feel to bad during the day. but it is quite clear the doctors are worried about my kidneys. My focus on the other hand, is on how quickly I can get better so I can continue the fertility treatments. When the conversation turns to the topic of pregnancy, some new information suddenly emerges. One of the autoantibodies I have, SSA, is an autoantibody that can pass from the blood to the placenta when you are pregnant. This can potentially cause heart blockage in the fetus and in some unlucky cases, the child might need a pacemaker. In addition, it turns out that there is an autoantibody I have not been tested for yet that can increase the chance of blood clots and miscarriages. I was not prepared for more bad news. My face bursts into tears and the doctor hands me a paper towel.  |
AuthorA blog about beeing newly diagnosed with lupus. Dreaming of becoming a mum once the disease is under control. I am translating the blog to English so the posts will appear on this page as I go. Archives
November 2021
Categories
All
|
RSS Feed