I have been taking a natto k enzyme (helps with sticky blood) since rheumy said my bloodwork even though I had a positive ANA, doesn't mean I have lupus and said because I can bike ride far, I do not have lupus. My question is, for anyone that has clotty blood from SLE could it be that when I have several days of middle back pain, and difficulty breathing that I may be clotting? Two of my brothers have sticky blood and on warfarin. I know my brother gets bloodwork often, and sometimes it doesn't show sticky blood. How can a dr say u r ok, when this fluctuates with lupus patients? I don't understand how they can say this. Also, a problem I have is my ins is so bad, it would probably cost me $1000 to test my blood to see if I am sticky. I cannot afford to constantly be tested. Then I read, this natto k enzyme is helpful with maintaining already healthy levels of blood clotting factors within a healthy range. Sle is not a already healthy level. OR, is it just the inflamation in my lungs that is causing my breathlessness? If I sit in front of steamer all day with eucalyptus, I can breathe.
Any ideas would be welcome! Thanks.
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Natura
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I have both APS and SLE. i can understand the drs. saying that as you bike ride you dont have lupus. I couldnt do that as I get very tired through SLE. However with the APS I can get up each morning and know almost instantly if it is playing up and my INR is low. I have to be between 3 - 4 anything less and I cannot function. unless you can get a definite diagnosis it is very difficult. I am about to by a machine to test my own blood that may be your answer.
I feel very sorry for you as it has taken me years to get to where I am now but atleast I can function. The chest pain is very debillitating - do you get remission from it??
Diane...thanks for listening. I get terrible back pain in between shoulder blades for days. I do finally have relief today and able to breathe normally. It is so hard. I feel very scared when I have this for 3-4 days. I can take pain, but having trouble breathing is really too much. Think I will have to go to dr. Next time this happens. Interesting about machine...
Keep cycling. It will do you good. When I went to my first rheumatology appointment I think I shocked people when I talked about my jogging. I haven't been able to go running since the end of September but fully intend to take it up again. I love the fresh air, it makes me feel energetic and perks my mood up.
Shazzer...that is my philosophy too. I feel better after I exercise even if it's really hard to start. I will keep riding, and I am doing my elliptical in the basement and weight training again for the winter, I take a day off in between sometimes. I exercise when my body feels ok.
Beween 3 and 4 is too high - the recommended INR is between 2 and 3. You can have a brain bleed if it gets too high. Mine has usually been 2.7, and my hematologist would like it around 2-2.5. If I change my eating habits it goes TOO low and then they start adjusting the dosage which requires labs constantly. You should also try and take it the same time every day. Coumadin is a very strong med. Deviating from the time frame can make you feel sick. The shortness of breath can come from many sources. How is your hemoglobin? It you are anemic that will cause it. Have you had a breathing test? I use Spiriva once a day. I play tennis 4 days a week. I can tell whenmy hemoglobin is dropping. I get out of breath when I serve the ball. We all learn about our bodies eventually. We can tell the way we feel. I know when my platelets fall. The bruises on my hands and arms get darker.
Thanks tennis. Can't tell with platelets. When I get the bloodwork done, my platelets are fine. Everything's within range, hence the drs. Saying I am fine. I am going to pick up my most recent bloodwork this week. I had it done a month ago. Drs never tell u when u are on the border of something. Just that my cholesterol was high, but I didn't fast before they took my blood. My sedimentation rate-westergren was pretty low. Not at lowest level, but close to it. Which lead me to read up on describing low plasma protein. Why do drs not mention when u r near the low limit, only when u r over?
In my case, I'm on Coumadin but also have ITP. My platelets have gone as low as 32,000. So if my blood is too thin, I am in danger of brain bleed aka cerebral hemmorage - which is what my 48 year old paternal grandmother died from. She got it from Lupus - my Dad got the Lupus from her - and I am "carrying on" family tradition. I made 71 - and counting! My blood work is really poor, but I am still out there on the tennis court and at the pool. Can't ride my bike anymore because the blood clots in my leg totally trashed that vein and bike riding hurts my calf. I even tried rising with the compression stocking on - no dice. Bikes are unfortunately out of my life. When I was in the hospital and they were frantically trying to dissolve the blood clots which kept breaking off and floating in my leg, my INR had gone up to 6.7. The nurses were freaking out! They were giving me shots in my stomach; had me on Heparin IV, and giving me Coumadin. It didn't work immediately - but then everything kicked in at one time! How I am still alive is amazing!
I am so sorry tennis. It is quite upsetting to inherit such a disease from our parents. I am sort of angry about that still. My mom died at 48 from colitis and her liver going and becoming septic. My father made it to 76, but died from a clot in his lungs after an appendix surgery and finding peritonitis. I am still angry about that. I worry that my life is limited by these factors (I am 51), hence my anger at feeling like I have not yet lived. I will continue to exercise as much as I am able. But, try to have the courage to realize when I cannot anymore. Bless you for your swimming and playing tennis still. Hope for good days!
Daisy..my one brother has intrinsic circulating anticoag lupus. My other brother has a gene that makes him susceptible to clotting. Weird that they r both different. I will look on Hughes site for answers. Thanks.
Hi I have SLE and iv been put on hydroxycholoquine and now also on aspirin because my blood test showed I was positive for clots in my blood..I recently had to have two different xrays because my blood test showed I had clots in my lungs but later my xrays were fine..it is scary and I can understand how you're feeling..
I was diagnosed 3months ago and been on these meds since then but still don't feel any better .what makes it worse is I'm also 3montha pregnant and mum of four already ..its been really tough for me..
Thanks ramada. That is what I am worried about. Sometimes clots are there, and sometimes not. Hard to pinpoint when to get an X-ray....hope you are well today...so sorry..
Thanks Natura..I totally agree with you.today I had my rheumo appointment at the hospital.. Doctor said my lupus is in control and theres no sign of lupus but i would have to keep taking hydroxchloroquine.my blood test also showed that my blood is sticky and so I should b on aspirin.it helps to communicate with people who are on the same boat..sometimes when we ask so many questions the doctors think we're being a smart a*s*.
Ramada....that's it. Because I had some knowledge, the drs get all defensive and think I am a know it all. They ignore everything I say. It's very discriminating. Why can a dr admit they don't know everything and listen. Why are they so threatened ?
A positive ANA means you have some kind of autoimmune disease. Have you been tested for the Lupus anticoagulant factor? I've already had bloot clots twice and on Coumadin for life. It requires constant monitoring and labs. Research has proven that Coumadin as opposed to Xarelto, Elequis, etc. works better against blood clots. The other blood thinners are basically for heart issues. Sticky platelets are normal with ITP. Your tech must use a lavendar cap - that's what I've been told. when I got for labs, they test my platelets twice. They were as low as 32 - last visit one month ago - 53. I go tomorrow. White count is always low from Lupus - somewhere between 2 and 3. Hemoglobin shows slight anemia - I take oral B12 that helps. The Worst is the secondary - Raynaud's, Scleroderma, Sjogren's, etc. Lupus does not "travel" alone.
Thanks tennis, I mentioned to my gp my brother having intrinsic circulating anticoag lupus and he ignored me. I don't even know if he did the test. I have to get a copy of report. Platelets and other bloods ok. That is why I never get help for when I am feeling bad. It fluctuates and hard to pinpoint. Like I said, my ins stinks, I can't afford all these tests. Last lab bill was $500. I also told my gp about my fingers hurting from cold, and he ignored me too. I am so tired moving around to try and find a dr who will listen to me. Thanks everyone for your help.
The platelets sticking together need to be tested with a lavendar top tube -- that's what my hematologist told me. They use both. When your counts (platelets) are abnormal, they have to do that to get a definite reading. With SLE, you eventually develop all the diseases that come with it -- ITP - low platelet counts. Lupus also lowers your white count. If you don't take steroids, you never have to diet. Lupus keeps you thin. I refuse to take steroids. I took them once because my platelets fell to 32. I took a massive dose. They rose 100 points and a few weeks later - back down again. It's not a true result. I take Coumadin only because I have blood clots twice - the second time in my leg and lung. I was being injected with Procrit because my hemoglobin kept falling. I was B12 deficient. They finally discovered that when I was hospitalized with the blood clots. Make SURE you remind your doctors to test everything! They do mess up - and we suffer. My doctor said "OOps, I missed it." Ya..it nearly cost me my LIFE!
That is horrible tennis. I don't get it. Almost like they really don't care. What if I had a heart attack or stroke? I guess they would just say, oops....unbelievable. I am so sorry. Hope you are doing ok now.
Ya I'm more aware now! I kept telling my husband the swelling in my leg was from the Wonton soup we ate! Every day my leg got bigger and bigger and I kept telling my husband "must have been the salt." I couldn't walk for 7 weeks. It took many months to recover. My lung collapsed too, so I had to be careful about doing anything too strenuous. I finally gave my hematologist the disk which showed the entire leg with clots, and told him that he neglected to check my B12 level and the Procrit caused the clots. His response was "Oops -- I missed it." That's why we ALL have to do due dilligence and monitor ourselves and study our labs and pay attention to our symptoms. Our doctors are overwhelmed with ao many patients. It's up to US to keep track of our health. In south Florida in the winter time, the snow birds have nothing to do most of the day, so they go to doctors and labs, and the medical staff is overloaded here. By time May comes around (if we all make it!), things go back to normal. When we see the car carriers come and take the cars up north, we party! YEAH THEY ARE GONE!
That is funny tennis. Nice to be in Florida during the winter months. I guess u r right about drs being overwhelmed with patients. I can't even get thru my drs office on the phone. It's always busy. Do we just not have enough drs? I don't get it. Why is everyone so sick? And yes, one leg being bigger than the other is what happened to my brother who found a clot in his leg. So sorry. Good thing you did pay attention to yourself. It's awful that we have to pay such close attention to so much. Take care!!
Natura - Florida is cold right now. I have the heat going. My Raynaud's started to kick in, so I had to turn the heat on. Tomorrow morning the wind chills will be in the 30's. We had 40-50 mph winds today. People think of Florida as "the tropics." We have winter as well - our homes are not built for low temps so it gets mightly cold for us Lupies! We have telephone problems with doctors as well. Many times I call and it rings 20 times and I hang up and call back. That is precisely why I've been saying - be your own advocate! If you think something is wrong it probably is! Don't call your doctor - walk into the office and tell them they don't answer the phone and you are sick! Best to ya!
You too tennis... Didn't know it could get that cold in Florida. Best to you too. I had one dr tell me once..u r not a hypochondriac, you just know your body real well. I hold onto that, because I know when i don't feel right. I have problems with my finger tips getting real cold too. And they don't warm up sometimes. They feel real cold. Thought about moving to Florida someday because of this. Not good in the cold. Went hiking in the cold with my dogs. Couldn't warm up when I got back. Hot shower didn't work. Hot cocoa, nope. Wood burning stove did it. So, the rheumy said no raynaud's too. Ugh! Stay warm. We r getting slammed with a blizzard right now.
Yes Florida gets cold in the winter - but we don't get snow. My own kids called me a hypochondriac before my labs proved differently. I have little support from people - that's why I am here. My husband "thinks" he supports me, but every time I talk about something I am feeling his response is always the same "I have the same thing." No he does not! Not even our doctors can FEEL what we feel. God bless you all for this forum! I would go insane if I couldn't talk to people who understand. Even good friends don't - or maybe don't care? It's a tough hand we've been dealt - all of us. I am angry, yes. There are lots of bad people who are healthy and don't take any pills or maybe one or two. They are a lot older too. Is it wrong to say "Why me?"
Tennis....same here with my husband. He says we all have that..we r getting older. Oh well. This site is extremely helpful. Makes me feel like I am not crazy. I also have a sister who is a pediatrician, that thinks I am being a hypochondriac.
Yep aging doesn't help. What are symptoms of APS? I will look at old labs and see if the test for it -- Anti-something - is normal. Can anyone explain it to me??
Don't really know tennis. I am just looking into this myself lately as the dr keeps telling me I am fine. When I get painful headaches that I never use to get and some problems with my eyes where I feel like my vision is bad in one eye, it makes me worried about a stroke. Strokes run in my family. I think that is part of APS.
Is it Westergren test? The lab sent the wrong tubes in so a lot of my tests could not be read. As for vision - I had cataract surgery on both eyes, and laser on both. My vision has been poor for a long time, since the "fibers" tore away from the retina, and I have floaters that block my vision. That is one thing that cannot be corrected. No eye doctor can remove them. There is one procedure that is done in some states but the risk is very high for blindness. Not a good idea. Headaches are part of Lupus. Have you tried Tramadol? I take one when my headaches become migraine. Caffeine helps. I need 2 cups of coffee every morning. everything that takes place my GP puts on Lupus or, as he sometimes calls it - "connective tissue disease." I guess it sounds more "textbook."
Tennis..Have to be careful with aspirin as my kidneys are scarred. I cannot have Motrin anymore. I think I can only take Tylenol which is not strong enough when it's a migraine. Why are headaches part of lupus I was wondering? I just get scared when I get get back pain along without not being able to breathe well. Trying to figure out connection...so sorry about your eyes. Must be very hard.
Ask your doctor if you can take Tramadol. It's like a strong Tylenol. He prescribed it for me as I cannot take much of anything because of the Coumadin. My husband takes it for his back and it works! The instructions say take 2 every 4 hours for pain. I take one and it helps with my migraines. I must have 2 cups of coffee in the morning though - regular coffee. That helps with warding off migraines. If I don't have the caffeine my body needs - it's migraine city! My labs today were very good! Platelets up to 68 - hemoglobin 12.4, white count 3.3. Best I've had in months! I've been eating a lot of meat and chicken and eating an orange every night. They must be working! No labs for 4 weeks! Yeahhhhhh
So happy for you tennis. I will look into tramadol. As long as it won't hurt my kidneys. I worry my scarred kidneys will get worse. No one knows why they are scarred. Actually, my jerk of a gp said the report says may have cortical damage on both kidneys. He said it didn't mean that they were...ugh!!! That is why I couldn't urinate a year ago and ended up in ER. What is wrong with these drs. thanks again...so glad you are doing good. I try to eat good, but lately eating too much chocolate. Ha! I have to get back into my juicer. I felt great when I juiced.
I had labs yesterday but just had the CBC report, which was all good! Now I have to wait for the rest to come back and hopefully they used the correct tube. It was kind of a mess yesterday - the tubing broke and my blood spilled all over the arm of the chair. But...it all was good in the end. My creatinine level is sometimes high, and it's been several weeks since my last result, which was a little high. I also reminded my doctor to check my B12 level! He seems to overlook that..and gets me in trouble! Stay well.....and in good spirits!
I took a short walk this morning - the wind chill was 39. It took a good half hour for my fingers, toes and nose to defrost! We're getting this wind and cold from the blizzard that is in the northeast now...an offshoot. No matter how warm I dress I can't deal with the cold. This is unusual for Florida. We normally get one or two days when we have to use heat....I have it on now. Labs at 1pm today. Curious! It's been 4 weeks. I'll let you know how they are. How would I know if I have APS???
Hi I have aps and lupus and chronic obstructive airways, my INR has to be between 4.5/ 5.5 as i have had so many clots even when my blood has been reading 3 , i also no when its out of range i feel quite ill its very hard to get mine stable i have bloods taken twice a week and been told this will be for the rest of my life, its very hard to live with but do the best i can ,
Good luck hope you get sorted it does sound like APS, though i am no doctor. x
Thanks rlupus. So frustrating. I don't know what to do. It was quite scary not being able to breathe well for 3 days. I couldn't catch my breath either. Had to sit in front of a vaporizer all day and night so I could breathe. Scared me. Next time it happens, I guess I better get to the dr. To do what, I don't know. I guess either deal by myself, or get a sono? I don't think X-rays show a clot, right?
Hi sorry for late reply i had hospital appointments all day yesterday and i now have to be admitted next wedensday as my consultant is away for the rest of this week and he is the only one i trust , my clotts i have had only show up on certain scans and i cant have the dye the use as it affects my asthma .I am not looking forwared to next week as i all ready have a port a cath in my chest that has decided since November it does not want to work , My GP had sent a urgent letter but nothing been done until i had seen my Asthma consultant yesterday who has said i need to be admitted for breathing treatment and IV Heparin as my blood has dropped to 1.3. And then told me he will have to put a pick line in as port not working he has said i can only have this in for 2 weeks max , so while i am in hospital he is hoping to get the other consultant to sort this port out it will have to be removed and then a new one yet again i am on my 3rd within 5years !! I hate this illness its driving me mad ,
Anyway sorry for the rant hope your ok and getting sorted, x
Hi R...I am so sorry for your troubles. You are having a very hard time with your health. I wish there was better help for you. Will keep you in my prayers.
Don't know how your Dr. Said if you can bike ride you don't have lupus. I was told to try and exercise to keep muscles strong as my muscles very week. Now have a wee dog to walk, doctor and nurses happy about that. Do find my job most difficult next day I'm no use. But I'm afraid us lupus lot are made to work with no choice or no income apart from a wee bit Dla. So if you can't do a wee bike ride, then why are we made to work then. Then suffer in pain and extreme fatigue.
When I couldn't ride my bike or play tennis, I started to walk every morning. Eventually I worked up to an hour of steady walking. You ALL must stay active!!! You have to fight at least one disease or more - ALL of us - and if we don't stay active - our diseases win!!!! Push! Get out of bed! Do something that makes you sweat! Don't give in! We would all like to simply stay in our beds and watch tv or read and eat. NO! There is NO cure for Lupus and I gave up waiting for one long ago. My only weapon is to stay active and not let my body attack me!!!! WE are going to win this battle! There will never be a "magic bullet," so stop waiting for one! The bullet - the ammunition - YOU have!
Tennis....I agree with u ....u r a fighter like me. When I got scared of my symptoms, I started working out and pushing my body. I totally believe this too. Keep exercising!!!! Very important....
So sorry molly. That is why I started bike riding. My muscles were getting very weak. I got scared, and took matters into my own hands by exercising again. I use to exercise a lot when I was younger. Got burnout after having children and such. And yes, I am tired the next day with back pain. Sometimes I think I over due it and my body reacts. Take care...do the best u can. exercising always makes me feel better in my mind too.
Hi saw the haematologist on Monday and he stated that if my INR went to 8 and I had a brain bleed I would die. However, because of how severe my APS is I can only function above 3INR so it is being watched. Regards Diane
So sorry Diane....I wish this could all go away....hope things will get better for you
Natura I completely relate to what you are saying. As you probably know I have a diagnosis of RA rather than Lupus and my autoantibodies are equivocal with negative ANA. However I'm lucky to have the NHS so I don't have to pay to get myself tested continually as you do.
However, like you, I feel that the more knowledge I aquire the more some doctors, my rheumy included, seem to hold it against me. My rheumy has actually commented in his letters "she claims to be fatigued - however I have met her in various health contexts and I hope she enjoys this work". And then he comments in my consultations "off anywhere exciting today?" or says as an aside "is there no end to this woman's business?!" when all I'm doing is working to pay the bills or visiting my sons plus voluntary work to try and keep my brain active and help others with similar or worse problems to mine!
I exercise daily but it's like an endurance test just now. Plus I walk the dogs everyday because I have to. I think that this is the reason I'm not much sicker with my RA/ autoimmune disease and I am almost supersticious about keeping moving all the time now - fearing that if I don't I will sieze up.
Everytime I go away and attend meetings and work I come home and spend days, even a week in bed flaring and exhausted. But it's my way of staying vaguely sane so I'm not going to stop!
It's all very well when fellow sufferers or doctors say that we can't be very sick if we can do all this but each of us is different in the way we approach living with long term conditions. Each of us has a different pain threshold and different limits. I'm a person who will always take up a challenge - whether that comes from my own immune system or from an external source. My GP often despairs of me! But I know people who have founded charities despite living with aggressive autoimmune disease where others just can hardly crawl they are so ill. No one should judge or diagnose us by what we can or can't do I feel.
PS I think I have quite sticky blood too because my red blood cell count and MCV are always at the very highest end of the normal range. This worries me a bit too - especially in the light of burning nerve pain / Erythromelalagia 24/7 because thick blood can cause this I believe. I might start taking Asprin soon if my GP approves but my stomach is very sensitive.
Twitchy...wow....it's just not right. We have to be our own drs, and then when we see them, they get mad at us for being too knowledgeable or they say something stupid , your exercising, you can't be sick. I don't get it.
I agree with everything you said. Thank you for sharing. Keep fighting!
Some doctors only see the outside of us. We a re the ones that feel the inside. Yes I work just 2 shifts a week, walk my wee dog. Which she is my the best thing I've ever got . And my antidepressants have been reduced since my pup. Don't know if I have sticky blood or not. I get my bloods done every month.take care.
It sounds like you need a new rheumy and better insurance. Since you said you were in the storm, are you in NY or MA?
When I first sick, I have a flare for about 6 months and then feel almost fine for many months. I lived in NYC where you had to be braver than I am to bike, but I used to walk big time. But my current diagnosis is lupus like UCTD, since I don't have ANAs at the moment, and my records from the 80s have been destroyed. However, I do have a history of responding well to lupus drugs and I'm being treated now.
If you are feeling badly, you could ask your rheumy for a prednisone trial. If you get better, they know something inflammatory is going on.
Also, try to get sed rates and CRP tests, because that also says something inflammatory is going on.
Ann..I am in NY, Long Island. Problem is, I don't want to go on medication nor can I afford. My husband is a carpenter and doesn't get health ins. We have to get on our own and cannot even afford anything but the worst coverage. $3000 ded per person per year with only 40% of bills covered once ded is met. I am not working because of problems with my daughter and school and the fact that they don't get a bus. I don't know how to make this better anymore. I have been pushing to move or find something better for my husband that pays ins, but he doesn't realize the importance of getting better health ins. He gets all depressed and down on himself for failing to provide for his family. My westerners sedimentation rate is 5 when average is 0-40. This was done in July. I just found it on my blood work copy recently. If in range, drs don't tell you anything. I don't have a copy of my most recent bloodwork done in dec. as my gp doesn't offer to give it to me. I am planning on picking up. I have a different ins plan this year, so may look for a new rheumy. The other rheumy was terrible....I am tired....I wish I could just pretend nothing's happening. It's exhausting trying to deal with on my own.
Those new insurance plans have really high deductibles. I'm "lucky" enough to be on medicaid, which has its own problems. I've been going into the city--100 miles to go to the Hospital for Special Surgery. I brought them a ton of bloodwork and my history, so I did get meds. The one they usually give you first, is plaquenil. It's generic and wasn't too expensive, but recently they seem to have raised the prices, I've heard. There is a Lupus Foundation in the City. You could call them and ask for advice about your high deductible, etc. They may have advice for you, because they seem to know the ropes. The HSS has a medicaid clinic, but I don't know about " too high deductible insurance." Prednsone is cheap, but usually short term if you have mild disease. I really hope you can find some good help.
Thanks Ann. Maybe next time I am having trouble breathing, I will contact lupus in NYC. Good idea. I think there is one on LI too. But, its hard for me to seek help with them when my dr and rheumy say my bloodwork is fine and I don't have lupus. Still doesnt explain when I can't breathe or catch my breath. Don't know anymore...I just live with it and try to take natural anti inflammatories like bromelain, and drink a lot of ginger tea. I just believe the stress on breathing hard those days is going to stress my heart, and how am I suppose to get back to work when I have to sit in front of a humidifier to breathe. It's crazy....
I can only sympathise - it is dreadful that in today's day and age many cannot afford medical care. It's crazy and primitive. You hear us in the UK complaining about the NHS but We are all grateful that we still have it. Although is being eroded little by little by outsourcing and the increase in private hospitals. I can see the UK being much like the US soon, despite what the election campaigns seem to assure.
I'm so sorry for what you're going through - being ill is bad enough but knowing that you can't get better because you can't afford the tests is much worse.
Purpletop...I know. My husband tries to remind me that everyone is dealt a certain hand in their life, and they have to do the best with what was dealt to them. My sister has this thinking as well as she says a lot of people declare bankruptcy because of a medical illness. Still doesn't sit right with me, as I am a believer in changing things that aren't working. Have to sort this out some more in my head. Upside is, I haven't had a stroke or heart attack yet. I am not as bad health wise as many people in this site are. So, I guess I should be grateful.
I notice what you said about your freeze attack earlier in the week cos i had one as well. I was so cold my teeth wouldnt stop chattering for some hours.
But on this occasion i was with my fella and he told me my body felt really warm. I didnt actually take a temperature reading at the time but if my skin actually felt cold he would have told me.
I had made up my mind following previous attacks to try to be mindful of events preceding the attack.
A couple of days before i ate really well which left me feeling bloated. The day before the attack i didnt eat as much as usual.
I woke in the night for a bowel movement and about 30-60 minutes later i was freezing. The house temperature was very warm.
I think it was heralding a flare. Can't have been the same for you though cos the experts that apply the labels have told you you dont have lupus.
Cos i watch my bodies symptoms i have been known to adjust my meds on occasions to correct an issue and then inform the doctors later. It doesnt go down very well but we live with our condition 24/7 and the knowlegeable medical backup is not easily accessible without making advance bookings.
The fact that i couldnt get up without help, my hands were swollen, could hardly move my arms and felt like i had had a good kicking a week after recent bloods showed raised infection markers encouraged me to raise my steroids slightly for a couple of days. I have also taken more rest and feel improved from the worst.
We all have to self educate to stay on top of things. I know steroids are dangerous drugs laden with potential side effects but they always seem to stem bad events for me.
Reading suggests to me that plant sterols may have similar beneficial effects and some aloe vera preparations taken internally seem to give me the energy boost that comes with steroids.
But i believe first and foremost, whatever caused the condition in the first place, our best method of staying as well as possible is to be mindful of everything we consume and to remain positive .
I find a lot of agreement with Mercolas site. And my fella gets newsletters from Sherry Brescia.
If it walks like a duck and quacks like a duck then folliwing a duck feeding regime as far as possible may enable the duck to keep swimming successfully.
They are 2 advocates of food being directly linked to health.
I dont think a link would be allowed on the forum as they both sell supplements but I will message you details so you can read and see what you think. Or you could use Google.
I always read the comments section below any Dr Mercola article as sometimes others provide useful tips
You need to be refered to a rheumatologIst and InsIst on the referal. When you are refered than tell the rheumy on how you are feelIng and only he wIll be able to help.
Tell your Dr. That everyone is different and what you are doing to relief your pain and symptoms is working for you at present. If he is so sure you have not got it , then he will have no problem putting it in writing and signing it.
thanks Bartlett...you know, I know how I feel, I know my symptoms, I know I am not making it up. Yeah, it could all be lack of sleep (which was the rheumys comment), or I couldbe right. I trust myself more than the drs. It took me all Long time to find why I don't feel well. I was going to go to a hematologist, but tired of the drs telling me how I feel and how to treat. My treatment for myself is working. I have tried going off the nattokinase because drs say I am fine, and I immediately get tightness in my head, and pain that like I never experienced before. Not a migraine, I like the ice pick headache description. I get exhausted when I do a little. Exercising is an arduous task. I have to push myself. Trouble sleeping, trouble breathing, dizziness, trouble speaking correctly...I don't need a dr to confirm what I believe is wrong. I just want to live my life the best I can. I even had a kidney dr that's said your kidneys R scarrred. Could be the uti s that did this. Could be? Is that The best a kidney dr can give me? No further testing, just sent me on my way. An endocrinologist that said I am slightly hypothyroid, and need to get nodules biopsied. why? What are they going to tell me? The last straw for me was when my gp told me that the sono report on my kidneys didn't necessarily mean that they are scarred because the report said MAYBE. I could go to a hematologist to do further testing, but honestly, I don't even want to know anymore. I Don't want to get medical treatment, I would rather shuffle along with what I am doing and read what people are experiencing here and how they are dealing. Best medical advice out there...people who are actually experiencing the same symptoms. Thanks for your support!
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Newly diagnosed
Anyone have any experience with elevated resting heart rate (tachycardia) due to their sle? 
Did anyone posting here start their lupus journey with positive blood results without clinical symptoms?
Feeling cold 
