Update... change in diagnosis... : Just thought I’d... - LUPUS UK

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Update... change in diagnosis...

Angie245
Angie245

Just thought I’d update. Been in hospital all day today and finally a little further forward. My lupus tests are borderline so they are redoing. For definite I’ve been diagnosed with undifferentiated mixed connective tissue disorder. Has anyone else had their diagnoses change from SLE to this? I’ve been given a referral for the specialist nursing team and will start treatment for Lupus in a few weeks. Hydroxchloroquine to start when I have seen the specialist nursing team it can take 3 months to work. Anybody else on this can they share their experiences please? She panicked me a little saying that I need to have a consultation with the specialist nursing team before I can start treatment. The consultant is writing a letter to my work to explain my condition and the effects it has on my body as I’ve had some unkind comments in regards to my ‘apparent wellness; because I don’t look sick enough not to be at work!’ They want me to be off until I start treatment. My ESR was through the roof! Lupus boarderline so they are doing a lupus coagulate (I think I’ve spelt that wrong) test and repeat of previous tests. There are too many to remember! She said the fact alone that steroids worked and now symptoms have returned speaks volumes. I’ve lost 2.5kg in 8 weeks and she said needs monitoring as shouldn’t be loosing more weight on steroids. I’m 5ft 6 and now 59.4kg which is low for me. So fingers crossed this works 🤞 Do you know the real difference in today... listening for well over an hour and read my diary! Made such a difference, she said all the changes I am making are only going to hell and not hinder my progress. I’m sad I have something that changes my life permanently but happy I have answers for something I knew wasn’t right. xxx

13 Replies
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Can I just say she may have had a sheltered life: on the PMRGCA forum we have several people who have lost weight on steroids! It isn't unknown - we also have a LOT of people who didn't gain weight although that has been due to being very good and limiting carbs in their diet. Not everyone gains weight on steroids!

Angie245
Angie245 in reply to PMRpro

I think she just assumed with my increased appetite since being on steroids would have made a difference that’s all. xx

PMRpro
PMRpro in reply to Angie245

Possibly - but not necessarily! All the best!

Lisalou19
Lisalou19 in reply to PMRpro

I wish I was one of those that didn’t put on weight, I’m 2.5 stone heavier 😅. Should have read more blogs are restricting carbs! But I prefer the better health if I’m honest x

Back in October 2018 I was given a preliminary diagnosis of SLE by by dermatologist and hydroxychloroquine started immediately on a dose of 200mg twice a day. I believe it is common practice to start on this medication while investigations are ongoing because it takes six to twelve months before patients really feel the benefits to symptoms. Symptoms such as severe joint pains, chronic fatigue, skin rashes, hair loss, etc. which are my symptoms. My Rheumatologist has told me my SLE is mild and immunosuppressants used in moderate to severe cases come with complications like increased risk of severe infection. Sjogren was also mentioned because of my red, dry eyes and dry mouth. Fortunately you seem to have very supportive health professionals around not all of us Lupee Warriors have this experience. I am learning to cope with frustrations from hospital appointments that leave me in a state of limbo, thank God for the reassurance and safety net of this forum. I hope you are following a nutritious diet this is so important. I recently returned to consuming two tablespoons of Bragg's Apple Cider Vinegar first thing in the morning before eating and drinking and then I take a warm bath or shower. It is helping to ease early morning stiffness and joint pain and has increased my energy levels (well I think so anyway). It's a challenge managing a changeable medical condition, one minute your up the next you are down. Take one day at a time and be kind to yourself, take care. X

I was put on Hydroxychloroquine 3 months ago 2 X 200 aday and have just been reduced to 1 aday and have already noticed that some of the symptoms are coming back. I haven't been given a diagnosis either way as my bloods are all over the place.

Felt ill at first on Hydroxychloroquine but it could have been a bad flare and settled down after a while.

Recently since starting the reduced dose I've noticed that the dry eyes, mouth and nose are back and so is the pain in my feet.

At the moment the rashes are behaving although according to the GP dermatology clinic are very concerned about me.

So I'm still in Limbo land.

Good luck with the treatment. X

Angie245
Angie245 in reply to Boudica1

It’s the dry eyes! They drive me crazy! xx

Boudica1
Boudica1 in reply to Angie245

It depends which is causing the most problems at the time. I think I'm almost used to the dry eyes nostrils and mouth but there are times when it's really bad. The painful feet are a totally different kettle of fish and can at times go from one foot to another and then back again. I've also noticed that the skin is starting to get itchy and a prickly sensation which used to mean the spots were about to appear. I really hope that they stay away as it's bad enough with the telangiectasia on the face increasing along with all the spider veins on the checks and around the collar bone and throat.

Guess I have to wait and see.

Angie245
Angie245 in reply to Boudica1

My feet drive me crazy also! I wrote a post asking for any hints or tips! It makes me feel embarrassed as I then walk with a limp as my left foot is so bad at times! Painkillers just don’t touch it. xx

Boudica1
Boudica1 in reply to Angie245

The limp is a bit embarrassing. Do you drive and if so do you sometimes get the foot pain while driving? Sometimes I have to pull over and stop until the pain goes away. Probably a good thing that my husband likes to do most of the driving.

At the moment I'm also waiting to see what my skin does this summer as I had so many different types of rashes last year it was driving me nuts. Oh well time will tell.

X

Angie245
Angie245 in reply to Boudica1

Yes but I drive an automatic so can keep my left leg straight which causes most of the problems. To be fair when I flare bad I can’t drive as my wrists swell and I can’t move them.

I am praying it doesn’t get worse with the summer coming as I love going abroad! But I’m also conscious that I think whatever it may be we have caught it early on.

Fingers crossed for you!!! ❤️

Boudica1
Boudica1 in reply to Angie245

I'll just be glad when they find out exactly what it is. I've been doing some research/reading about Jessners Lymphocytic infiltration and it seems like there are 2 theories about it . 1, it's something to do with timid lupus as they share the majority of traits and 2, it's a separate entity by itself.

So if they can't make up their minds it leaves me in limbo. At least while I was on 2x200 Hydroxychloroquine a day a lot of the symptoms eased off.

The dermatologist keeps saying about a combined clinic but I have no idea what's going on or if rheumatology want to see me again as they haven't said anything.

Like you though it does seem at times as if we're hitting our heads against a brick wall.

X

Def heard of a number of people going back and forth between Lupus (and others) and UDMCT. That’s actually where I started, but it began to present more specifically over time. IMO UDMCT is a condition possibly unto itself. Hope you find great care and a good treatment plan!

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