Finally given a diagnosis of Mixed Connective Tissue Disease

[Michellear]

Hi guys,

Been posting on here for a while, and everyone has been super helpful and provided much needed support and advice

Just to give you an update, I see the rhemo today and have finally been given a diagnosis and more important treatment!!!

I’ve been suffering for the last 5 years on different pain killers so feel relieved I am finally getting the correct treatment.

The Rheumo diagnosed me with lupus like mixed connective tissue disease and I have been put on Hydroxychloroquine 200 mg daily.

More bloods ordered to check liver and kidney and due to see dermatology soon. It’s a relief to say the least!!

For anyone out there persevere and get the right rheumo.

Shout out and a big thanks to lupus UK who recommended a consultant in the field through the NHS

Ps and told I have sticky blood antibodies but not needing aspirin at the mo.

ANA in Aug 2020 low positive 1:80

ANA in May negative!!

Diagnosed Graves Disease Feb/March 2021. I’m just greedy

[Hidden]

Very pleased to hear that you are feeling better and having the right treatment, I hope this will help you enjoy the unlockdown 😃

[Michellear in reply to Hidden]

Thank you!

[daffodill2 in reply to Michellear]

Hi I have been on hydroxy for years and have been fine, I have been on microphenolate as well for 6 month I am ok with micro but I am having lots of mouth ulcers never had them very often when I was just on hydroxy, hope all goes well with hydroxyfor you take care .

[Michellear in reply to daffodill2]

Thank you😁

[svfarmer]

Hi Michellear I’m so pleased for you xx

[Michellear in reply to svfarmer]

Thank you!

[sarahsch]

Really pleased for you Michellear. I hope the hydroxychloroquine eases your symptoms. It did for me.

I assume Rheumy explained that it might take some time (6+ weeks) to work.

🎉

[Michellear in reply to sarahsch]

Thank you, that’s helpful to know!

[MEGS53]

Congrats on your perseverance!!

[Michellear in reply to MEGS53]

Lol thank you! Been a long road....!

[MEGS53 in reply to Michellear]

👍🤗👍🤗👍🤗

[lufibabe]

Hi..that's some good news! Great tou persevered..I am new here..I have lupus like symptoms with weak ANA..

However I am told that I have fibro..

Am just on duloxetine and weaning off Pregabalin (as was putting on weight)

Do you mind sharing what symptoms you have had over the years..or point me to your previous posts pls? Only if it's not too much trouble..

There are days in my life I convince myself almost that I have nothing- as in i am fine..nothing wrong with me..then the pain kicks in and other symptoms which says otherwise...its a yoyo of emotions..

☹️

[Michellear in reply to lufibabe]

Hiya lufibabe

Sorry to hear what you’re going through. I’ve had exactly the same experience.

It’s taken about 5 years to get here and I was told for years it’s fibromyalgia however I don’t believe I have the symptoms of fibromyalgia!! Since the diagnosis yesterday of ‘lupus like Mixed connective Tissue Disease’ I’m told I also have fibromyalgia!!

My symptoms started about 5 years ago, it started with really bad pain in my heels I couldn’t stand up for about 30 mins in the morning.

Then my joints started throbbing and aching and with it came extreme fatigue.

I started noticing low grade fevers when I had these symptoms.

Around the same time I started getting a malar rash (diagnosed yesterday) before the symptoms started. In addition discoid eczema that I had as a child came back in my ears and scalp.

I then started having severe acid reflux and problems swallowing, period of choking on anything I ate or drank.

Over the last year I started getting severe headaches before any flare and constant water infections!

Potential Raynauds severe pain when near anything cold (Eg chiller isle in supermarket) used to have chilblains through 20s on fingers. And mottled skin arms and legs.

Constant low iron, vitamin b and d

I think I’ve covered everything!

I tested ANA 1:80 last years but now negative and tested positive for sticky blood.

I’ve had to fight so hard it’s awful it makes u feel like you’re going crazy!!

First rhemo 3 years ago confirmed fibromyalgia , then had to wait a year to convince the Gp to refer me to different hospital.

Refereed Jan 2020 and had Telephone appt, guy dismissed it as fibromyalgia. Follow up letter to appt detailed 2 symptoms which I haven’t got and the factual info was all incorrect!!!

After speaking to PALS I logged a complaint and on recommendation of Paul Howard (Lupus Uk) requested I was seen by a specialist in Lupus under my nhs trust!! Waited 12 further months but finally got there!!

You’re entitled to a second opinion, you could request this through PALS or your GP.

First message Paul Howard as he will recommend specialists within your NHS trust.

Good luck and feel free to message me anytime.

Xxx

[lufibabe in reply to Michellear]

Wow! A lot of it sounds similar to what I have been going through..My left knee one bright morning suddenly went..couldnt walk..that lasted about 6 weeks..then came the malar rash and extreme fatigue..I have always had low iron and low vit D..the rash I was told is dermatitis however nothing worked and I found I was reacting badly with sunlight exposure..my face and my hands (due to exposure with driving)..I would also get severe headaches and drained out feeling...this lasted for 2 years..the blood test showed 1:100 ANA but was told that's top weak so was dismissed..just told to use a high SPF..I stopped going out when sunny..and always looked for shade..suddenly one day the rash stopped..

However other joints problem started..my lower back went suddenly..that lasted another 6 weeks..and my knee has never been the same..

I also get alot of hair loss..mouth ulcers and nose ulcers too..

After so much to/fro and feeling not being heard..got a private referral to rheumy..(however covid came) and at that time.. my left shoulder went..then the right shoulder..by the time I got phone consultation with the rheumy..my sleep was very poor due to the pain and not the other way round.. so rheumy did all the bloods again weak positive so he said due to sleep issues etc..I had fibromyalgia!

That's it..

My pain continues..and my story continues...

Some days are good and some not!

I take inspiration from you..I will keep on persevering...till I get to the bottom of it..

Wishing you all the best!!

[lufibabe in reply to lufibabe]

And forgot to mention...I am also recently started getting alot of reflux issues and feel like there is narrowing of my throat..

[Michellear in reply to lufibabe]

Really sorry to hear you’ve had such a fight, your symptoms do sound the same as mine. You need to PM or call up Paul Howard for some recommended lupus specialists/qualified Rheumos and get seen ASAP.

Please keep me updated. It’s such a fight! Xx

[Michellear in reply to lufibabe]

Message Paul_Howard

[lufibabe in reply to Michellear]

Will do.xx

[Hidden in reply to lufibabe]

Supporting you throughout,,,, rant and rave here if it helps - we all do! 😀

[CecilyParsley]

Hi Michellear I am so pleased for you that you have a diagnosis and treatment. It is such a relief isn’t it? The Hydroxy will take some time to kick in but hopefully it will help you feel better, it certainly did for me when I was on it xx

[Michellear in reply to CecilyParsley]

Thank you for your message, much appreciated. I hope the tablets help soon!

[miccika1]

Nice. Is 200mg just for some time? Usually the full dose is 400. Of course ythe less the better.

[Michellear in reply to miccika1]

I’m not sure, hopefully the 200m will help. Rattling at moment as diagnosed with Graves and thyrotoxicosis in Feb and taking carbimazole and too many beta blockers :/

[Jmiller623]

Great news! I hope you find some relief with hydroxychloroquine. I also have sticky antibodies with lupus but never had a blood clot. I am on a full dose aspirin because I think it actually does make me feel better. It could also be the NSAID properties as well I guess. Do you get livedo reticularis by any chance?

Really happy to hear that you are making headway. Success stories are nice to hear once in a while.

[Michellear in reply to Jmiller623]

Hi, thank you for your message! Funnily the rhemo did note what I call mottled skin. Is that what u mean by livedo reticularis?

Here’s a picture:

Thank you for your wishes I feel so lucky to finally be believed, get the right treatment and not to feel like I’m going mad!!

I’m a bit worried as wasn’t offered any aspirin.

Finally having liver and kidneys checked which is a Big concern for me! Hopefully I Will get good news

Can I ask what your symptoms are in respect of Lupus?

Thanks xx

[Jmiller623 in reply to Michellear]

Yes, this is exactly what I’m talking about. I guess I get 2 flavors of livedo. It’s dark like you have but on my legs. And light, lacy on my upper extremities like in the pic. Hydroxychloroquine also helps thin blood to minor degree since it does make platelets less reactive. I’ve had mixed reactions from my docs. 50/50 say yes to no. Rheum says no to aspirin. Heme says yes but only because I have livedo. The data says there isn’t any benefit to aspirin in prevention of clots in those with aPL and lupus but I just find that it makes me feel better and makes my livedo better. Aspirin is over the counter here so I started it on my own volition after discussing with heme. However, getting your liver and kidneys checked before any news meds are started is wise. My liver hates a lot of meds.

For symptoms, I have many classic lupus symptoms. Pleuritis, malar, arthritis, extreme fatigue, big lymph nodes, lots of rashes, mild kidney disease, low cell counts, infections, muscle weakness and soreness, Raynauds, peripheral neuropathies, cold intolerant.

I also have a lot of neuro problems. Autonomic dysfunction, wonky eyes, wasting of half of my face, parasthesias, sensory problems of the face and tongue, swallowing problems with aspiration, slow GI/esophageal dysmotility which presents as nausea. EMG x2 normal so I just keep on keeping on.

Livedo hand