Advice please

I started treatment for SLE 2 months ago following 2 positive tests, told it was to be treated as mild/borderline at the time and was started on Hydroxychloriquine it got a bit worse and was started on steroids and more pain relief.

Previous to this was diagnosed with fibromyalgia and diverticular disease and had quite a few admissions due to very elevated ESR and CRP, it was noted after a while I always had accompanying joint inflammation ( it was being treated as flare of my bowel problems at the time) and this started my visits to rheumatologist.

On reading more about SLE I think I have actually had it for 20 years ! Following the birth of my son I became very unwell and literally could not get out of bed (very fit prior to this with 5 young children and kept and bred over 20 horses!) my hair was falling out, I had rashes to face and blistered fingers and toes. I developed antibody/antigen and was told I had glandular fever 3 times over the next 18-24 months. I also started to suffer from severe migraines. Also have developed various allergies to food and medication over the years which hospitalised me on one occasion .

Over the years I have had 'flares' and periods of exhaustion . Over times of illness investigations showed scarring of a kidney, lesions on my liver and an admission for clotting issue following severe chest pains.

My question is am I just linking this history up and blaming it on SLE or does anyone else have a lengthy or similar lead up ?

ALSO (sorry , lengthy) I have been off work for 2 months and absolutely desperate to get back to work . I have a mentally very demanding job and a 3 hour commuting time . I am still so tired and cognitive function can be awful( mix words, lose words, very forgetful, I had to write this mail down on paper over a day as could not just put thoughts down) my headaches and feeling of faintness and loss of balance have started again since my steroid dose has been lowered BUT I just want to get back, even if part time. The big question is how long does it take people to get back to work and to feel even relatively better ?

I am so sorry this is long and rambling

13 Replies

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  • I wish I could give answer's but,I can't.I really depend on my reumatologist and GP for answer's and of course,they can't always give them.I do know that there are side effects to medication and a decision has ro be made as to wether or not they are going to help.I am always hoping that Lupus sufferers have good GP's/Doctor's because,as we know,we depend on them for the answers.Hopefully your Doctor/GP will be able to help you.Good luck.

  • Hi Binkey

    Thanks for getting back to me. My GP is great but by. His own admission does not have vast knowledge of this BUT that aside is a very good GP and we are muddling through this together. I have complete trust in him.

  • I read! It was a good read and broke my heart, but then all, all posts and blogs here end up doing that.

    The answer is mixed for both questions. (Diagnosed with SLE 11 years ago) - In the past, I've experienced chest pains, both severe and mild; migraines, more severe than mild; way too many flares; complete exhaustion; a stroke; a TIA; and skin rashes to complete your list. It hasn't slowed me down considerably yet in this year, but bad days have been prevalent already with chilly weather here. When I'm down, I'm out for months. 3 months is the shortest amount of time I can think of when my body feels strong enough to go out after being hit with sickness.

    When I had cognitive function three years ago, I was hit by a stroke and a TIA in the process. It took me about 6 months to physically and vocally talk as if I had in the past, though even now, I still mess words up. It took me about a year to really feel comfortable talking because I thought every word that I said was used incorrectly. I was thankful to have friends who could at least understand to an extent and know what I meant to say.

    Are you on blood thinners for the blood clotting? I don't want to suggest it but I am curious as to whether you've been tested positive for excessive blood clots while you were having cognitive function. That's what happened to me. It could be a reason if there is no medication that you are taking for that.

    All the best

  • Hi trufflington

    Thank you so much for getting back to me . My goodness my problems seem trivial compared to yours ! You have really had a tough time.

    I am not on anti coagulant as my bloods are not showing problems with clotting right now. Was told inflammation caused headaches/migraine and cognitive dysfunction was part of this whole thing.

  • Hi kirsty2510 l was reading your blog and it was like reading my own life story, it was almost exactly the same as how l was taken ill and diagnosed. I was Diagnosed about 18 months ago. after being ill for over 20yrs, I was diagnose with SLE, Divicular disease, Migraines, painful joints and muscles. something wrong with my liver, and l also had glandular fever very bad for 9 months

    .I am taking hydroxychloroquine. steroids, merbrevene tramadol, celebrex, amytriptaline. I had nearly a year off work with really bad flares, and realised l could no longer return, as the flares were so constant and the exhuastion and severe pain would let me get out of bed. It takes me about 4 hours in the morning just to get my body to try and wake, so decided l had to put my body first and not to push it to the limits. I have been at home now for 2yrs and things are a little better although l still get really rough times but l do get some not so bad days, so l do not regret staying home. and hoping by doing this l may get a bit of life back, Its so nice being able to talk to someone who seems very similar to myself,Thanks Do hope this helps x

  • Hi Lucy-may

    Isn't it odd looking back and reflecting on the signs and symptoms thinking my goodness why was this not re ignored before but it seems to be quite common to have lengthy time before diagnosis.

    Medication is starting to help although drop in steroid dose has allowed some symptoms to come back a bit but it is the fatigue and weakness that really gets me.

    I miss my job and hope I can get back soon even if I have to go part time.

    Thanks for your reply it was a great help. Hope you are ok x

  • I do hope you have some improvement as you wrote,diagnosis can be quite complicated.I hope you will be able to get back to normal soon.I am retired and try really hard to keep myself occupied(not always easy).I do volunteer to cook for the aged but this last week I have had flu but,as I always say,tomorrow is another day.Good luck.

  • Hi Kirsty,

    Like you, I was wrongly diagnosed to begin with and for over 18 months I was treated by an 'expert' (?) with Sulphersalazine. During that time I got worse, so demanded a second opinion. Glad that I did, as the new specialist actually knew what he was talking about. He told me that left on the current regime I had about 18 months left to live & that Sulphersalazine actually makes you worse !!

    I have had to pack up work after I was sacked for "failing to fulfil my contract of employment". Now, with proper medication, life is more tolerable but I have been told that I will never be able to work again. Life expectancy has also improved.

    Read up on the internet about what you have to get a better understanding, although be subjective as in all probability you will not have all the symptoms that it describes. You WILL also get tired and life is a rest v work balance. Without sufficient rest periods when you get tired a flare is more likely.

    Hope that helps you.

    One final thing, if you feel you are getting nowhere with your medical team, do not be afraid to ask for second opinions.

  • My SLE was diagnosed approx 5 years ago and I had very similar symptoms to you. Terrible skin rash across the bridge of my nose originally but that has since spread to other areas. my hair falls out in handfuls, headaches, severe pain and swelling in the joints, fatigue and erratic sleep patterns. I would say you sound very similar. Mine was diagnosed through blood tests and skin biopsy. At first MS and ME had to be ruled out as symptoms for those are also very similar. I hope you feel better soon, but I would definitely say sounds like SLE to me. x

  • Hi Kirsty2510

    I was first diagnosed with raynauds in april 2007, but shortly after suffering a miscarriage I developed severe swelling in my legs and arms, & began having terrible fever like symptoms & exhaustion. Thankfully my doctor was aware of lupus & contacted a specialist for me. I was diagnosed with SLE in the October and also have sjogrens. I started on hydroxychloroquine but it took around a year for it to start helping so I was off work for most of that time.

    Looking back I had always suffered from bad circulation and a good few years before diagnosis I had noticed problems with severe stiffness in my legs, and pain when walking a moderate distance. I too had always kept myself fit and active. I also experienced what I now know is called a malar rash on my face a year before diagnosis. Specialists have since told me that I was born with lupus! My dads cousin had lupus and MS & rheumatoid athritis run in my family.

    On a positive note though I have been flare free for around two years and I am back working part time. The only times I have been off on the sick have mostly been down to the usual sickness bugs and bad colds, but I do still feel pretty exhausted a lot of the time so I rest when I can. It's like learning to read and listen to your body from new and its important to do this. I do still have joint and back pain but my medication helps & I attend physio & hydrotherapy. I am so determined not to let this drag me down for as long as I can, and I know a few people with sle that work both part and full time so fingers crossed you can be one of them Kirsty.

    Good luck xx

  • Hi Aileen

    Just out of hospital after 10 days. SLE taken a turn for the worse lately and has become more aggressive. We are moving back nearer home as we are too remote here and my consultant is in Glasgow. I notice you are my nearest ' Lupus neighbour now ' ! Do you ever get involved in any local Lupus group, I never have but wondered about it as feeling slightly overwhelmed at the moment by it all.

    Hope you are well

    Ann x

  • Hi Kirsty

    Really sorry to have taken 4yrs to reply to you!!! As you can tell I haven't logged in here for a long time so didn't see your reply message. I hope you are keeping okay and have been able to manage your condition over this time. Did you move back up to Glasgow?

    By now you've no doubt found that the Strathclyde Lupus Group is in the area. I went to the Ayrshire one once a month, but the group stopped due to lack of members.

    Apologies again & hope you are well

    Aileen xx

  • Hello everyone that was kind enough to reply to original post !

    I have just had another appointment with my consultant in Glasgow and have a definite diagnosis of SLE now . As we have moved to the Borders my care is to be transferred here , the consultant has an excellent reputation and there is a dedicated clinic .

    Mixed emotional week coming to terms with a lifelong condition but I am a great believer in positivism and will keep trying to apply this although as we all know it can be tough despite our best efforts. Good bit is at least we know what we are dealing with and I can have appropriate treatment and amend my lifestyle accordingly . Those are good things !

    Wishing everyone a lovely Christmas

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