LUPUS UK
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lupus or/and fibromialgia?

Hi all, not been on here for a long time as first I was diagnosed with lupus last February but now it's been confirmed I have fibromialgia. I have also been tested for sjogrens and had a lip biopsy which came back inconclusive bit not ruled out. on steroid trial for 2 months which they changed my mood and a bit less discomfort for about a week. I started on 20ml for 2 weeks tapering 5 ml a fortnight. down to 10ml now. I was told by rheumy to keep a pain diary and if the steroids helped that he would put me on mycophenolate which I don't like the sound of with the side effects. I am just wondering if it could be both lupus and fibromialgia. I have a lot of burning/soreness on my back, a lot of aching, dry mouth and sensitivity to light, noise and smells. I get really stressed with worry as I am not on any medication that really helps with any of my symptoms. I have chronic fatigue and even daylight I am finding I am screwing my eyes up first thing in the morning to focus. list goes on and on. just thought I would ask in here for any feedback as driving myself mad.

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I too have lupus and fibro i think a lot of people have the same problem. Having haemocromatosis aswelldoesnt improve the problem.

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what's That? x

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Not everyone "passes" sjogrens tests but still has the condition which is common with Lupus. Did they do a litmus test in your eyes? Where they very dry? Personally I bet your "Fibro" symptoms are more to do with Sjogrens than Fibro and its a common misdiagnosis. Also have they properly tested your Thyroid (not just the failed TSH test)? Many of the symptoms people get are either cross over symptoms from low Thyroid or sjogrens and if not properly treated your Lupus will not feel under control.

HCQ is often prescribed for both these conditions as it helps with the fatigue and pain, although can take some months to fully kick in.

Also make sure your Vit D, B12 and ferritin are at optimum levels as they can contribute to symptoms with are Fibro like!

Try sorting one thing at a time out on the list Ive suggested so you can nail down whats causing your problem. Im sure you will be feeling better soon.

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Not had a litmus test. I have high immflamatory rate of 72 but I have been diagnosed now with fibromialgia but I don't know if rheumy has ruled out lupus or not as that was his first diagnosis. I have hot sweats and esteem sweating in warm temperatures, going in a warm shop is a nightmare, sweat buckets. full blood count been done loads of times with a couple of slight high and low results but immflamation points to autoimmune condition. xx

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Im not saying you don't have Fibro, its quite possible to have it run along side other conditions. However the problem is is that its easy for some Drs to use it as a bucket all when they are busy and restricted by financial restrictions for running more exhaustive tests to get to the bottom of what is really going on. Fibro doesn't require running any tests as is a subjective assessment normally based on pain scores. It should be used as a diagnosis after excluding all other possibilities, but sadly that does not happen and Im a case in point.

Sometimes you have to be your own advocate in either pushing yourself to get the correct tests done, finding a Dr whose is willing to do them or doing private tests yourself in somewhere like Medichecks or Blue Horizon to start getting an indication of what direction to go down. Its sad that patients have to do this but its a reflection of where the NHS is at the moment.

I had sjogrens diagnosed on a bone dry litmus test (5 minutes in eye). I had so many other symptoms that there was no need to subject me to lip biopsies which frankly are more expensive and not used much now.

Thyroid tests can be done on Medichecks. They have a Thyroid thursday special rate on many tests and combine thyroid and essential vitamins in groups to save money. They do one called Thyroid check UltraVit

medichecks.com/thyroid-func...

which covers all the tests you need to see if you have a thyroid or mineral problem and also checks CRP. It would be a start. They will reduce that by 20% for new members or on Thursdays so worth asking.

PM me if you need any help. Good Luck.

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Your symptoms don’t shout Fibro at me somehow and you wouldn’t have high ESR with that. But otherwise it sounds to me like you could have any Connective Tissue Disease.

It’s so easy to check whether your eyes are dry yourself as Schirmer’s blotting paper test has been discredited by eye doctors for a long time now but rheumies are just out of step. Any high street optician should be able to test you by adding some anaesthetic dye and watching how quickly it passes over the eye surface if you book and explain.

Any dentist can check for you whether your mouth is dry or not. Mine only looked dry when I was on a med, Cymbata, which meant I could barely swallow. So my lip biopsy was as highly positive as one can be but I think I’ve had it for most of my life. Perhaps yours would be conclusive in a few years time. It sounds like you are being taken seriously anyway and either Lupus or Sjögren’s can account for pain around the body as both are Connective Tissue diseases, as can UCTD and MCTD - same applies to chronic fatigue which affects most of us here as part of the inflammatory process. They need to watch your thyroid levels closely too.

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Thankyou for your kind reply. xx

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As you know, FM is notoriously difficult to diagnose and different clinicians often do not agree. The official diagnostic criteria are very vague and are mainly based on excluding other possible causes for symptoms of fatigue and pain. In other words, "I can't think of anything else, so Iet's call it fibromyalgia". I got a FM diagnosis on top of UCTD after my rheumy decided that my level of fatigue and effort intolerance was well in excess of what he would expect to see in 'normal' UCTD. However, since the FM diagnosis, I've been further diagnosed with adrenal insufficiency and myositis, so now my rheumy is uncertain whether the FM diagnosis is correct.

Like others have said, in practice, we probably have to work through our symptoms bit by bit and just try out different treatments to see what helps and what doesn't. x

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Hi there,

I just want to speak a little about the Mycophenolate, since I'm in the trialling period with it right now myself. I have UCTD, plus or minus some other autoimmunity diagnoses. Significantly to you, I have sun sensitivity. And it has been extreme. Let me tell you, though I did have nasty side-effects on the Myfenax version of Mycophenolate, it took 5 weeks to experience them. At which point many of my other symptoms had almost vanished! Sun sensitivity included. Bloating and constipation eradicated. Sweating dropping off significantly. I was ecstatic that I had seemed to get my life back so was shocked to have to go off it for unacceptable side-effects. However, we are trialling Cellcept version of Mycophenolate now and there is another one if this also gives bad side-effects.

The good thing about trialling the immunosuppressants is that if they work, they will know your diagnosis better. i.e. more likely Connective Tissue related where your immune system is in over-drive. Also, and importantly, my Rheumatologist is giving me Myco instead of Steroids, which are much harder on your body in the long term. She was very clear to me that this was the steroid-sparing option.

Just wanting to give you a little hope that there are meds that do work if they've got the diagnosis right. The key is to stop the immune system from attacking your healthy parts. The immunosuppressants do this.

All best.

Panda x

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You are a star. Thankyou for your information. I am so worried about this autoimmune thing which there definitely is one due to the high immflamatory of 72. my g.p. was baffled and couldn't give me an answer as to why so high and for such a ling time. my rheumatologist has put me on a 2 month course of steroids to see if they help which they did only briefly for a week. I did a few things in the garden, a little at a time and my mood lifted. I have been rock bottom since the weather has changed but have a lot of stress with fighting for benefits, having to go to a tribunal in September. I am in the 10ml for another week then down to 5ml for two weeks and then just stop. I have been keeping a pain diary as rheumy asked me to whichbi have kept a diary since my first diagnosis of lupus. I would like to talk to you again if you don't mind as you have been kind and helpful.

mandypandy1969.

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Hi again,

I'm in total agreement with Makimon's response. And just want to reiterate, not to be frightened of the immunosuppressants. If the Rheumy suggests them, I would try them. The premise is that your immune system is attacking itself, as it would in Lupus and UCTD and many of the other autoimmune diseases. This action alone could cause great damage to your body in the long run -- including cancer. To get the immune system under control with these immunosuppressants, by tamping down its over-activity, we have the best chance of long-term health.

Hydroxychloroquine seems to be the first medication that most Rheumatologists prescribe. For me, it was not enough. A few things calmed down, like swollen joints, but other things continued, some exacerbated and some new symptoms began, which could have been misinterpreted as Hydroxy being the cause, or making things worse. Instead, my Rheumy believed that it was because the Hydroxychloroquine was not a strong enough medication to stop the auto-immune process. Therefore Mycophenolate was introduced along with Hydroxychloroquine, not to mention other medications I'm taking for questionable Mast Cell issues. I seriously think that we are getting somewhere with me now. And as scary and frustrating and distressing as it all is, I encourage you to trust your consultant's suggestions. Even just as a trial. Then you will both have a better grasp on what's happening.

The stress of that tribunal must be awful on top. I wish you all the best there too.

Panda x

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Thankyou and yes I will of course do what he says. no question about that. yes pip assessment and waiting 4-6 weeks for the outcome which I am not optimistic about and then tribunal in September is causing me a lot if stress, anxiety and low mood. Thanks again. xxx

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Hi mandypandy1969,

My story is very similar to yours. I’ve been diagnosed for about 5 years with Fibro, then ME/CFS a couple of years later. At the end of 2016 I felt very unwell and it turned out my inflammation levels were very high like yours.

I’ve been in and out of hospital since then and still waiting for answers really, but have a current diagnosis of Undifferentiated Connective Tissue Disease (UCTD) with symptoms of Lupus. I was on oral steroids to begin with which did help, but every time I tapered off them I would feel very unwell again. I started a DMARD called Hydroxychloroquine last October and that has helped me a little with hardly any side effects. Recently I was started on Methotrexate which is another DMARD but is also an immunosuppressant, which sounds scary but I’ve had no problems or side effects so far. I’ve even had a couple of days where I felt slightly more human, which I haven’t felt like in years. I was hesitant to start it as the side effects sounded really bad, but I’ve been absolutely fine on them.

It’s true that it’s important to try the medication so they can see if you respond or not, it’ll make it easier for them to make a diagnosis based on this. Also, as others mentioned that DMARDS/immunosuppressants calm down the immune system and bring down the inflammation in your body, which will control the disease. Fibromyalgia doesn’t damage your body whereas autoimmune diseases with inflammation can, so it’s important to address this.

I think with Connective Tissue diseases it’s very hard for them to pinpoint one or the other at times, that’s why they use the term UCTD. Eventually you may start developing symptoms which point to single diagnosis, or you may have symptoms of many, but most of the treatments are the same so sometimes not having a clear diagnosis isn’t the end of the world, although it is frustrating!

I hope this helps and remember you’re not alone in this!

Sophie x

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aww Thankyou. I have found reading this as giving me hope. firstly I was diagnosed with lupus and was put on hydroxy but it made my symptoms worse. it was then decided it was fibromialgia. the sjogrens came back inconclusive so not ruled out. steroids have me a bit of relief for about a week and managed to do a few things in the garden. my mood lifted too. I have kept a diary while on steroids on rheumy request. always kept a diary from the start if first diagnosis. thankyou again. rheumy is on about putting me on mycophenolate if the steroids have helped. like you said about tapering, I felt a bit better after the first couple if weeks in 20mg then tapered 5mg a fortnight. on 10 for another week. xx

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I forgot to say that before I was put on hydrixychloroquine that I was given a course of steroids first and I felt like a new woman. the steroids kicked in straight away but tapering gave me withdrawal symptoms and then I got really low and back to feeling awful again. I walked for miles when I was on the high period on the steroids and then bang when I got back from Cornwall I crashed and burnt. xx

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How long were you on Hydroxychloroquine for? Steroids make me feel like superwoman on the initial high dose but then as it drops down I feel awful! It’s not the best treatment as steroids have bad side effects in long term use so hope you find something that helps you. Although the treatment I’m on now isn’t showing the same instant results as steroids, it definitely has helped my symptoms and I’m able to have a better quality of life.

You can definitely have autoimmune diseases and fibromyalgia together and your high inflammation shows this! I hope you get the answers you need soon, it’s frustrating when your tests come back inconclusive or clear when you know something else is going on.

Xx

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I think I was in hydroxy for 3 months maybe more and had to come of them as my irritable bowel flared up big time and i just felt worse than before I went on them. I am on 600mg gabapentin 3 x a day. doc said he couldn't offer me anything but this. didn't seem interested. when I first got put on steroids I too felt like superwoman but didn't last long. false sense of security. this time I haven't had the same response at all. xx

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