Connective Tissue Disorder

[Ronswife]

Since 2016 I have had a PMR diagnosis improving. I tapered off any Prednisone a few months ago and have never felt great. New blood work has had my Rheumatologist to call this now Connective tissue disorder. I will continue on 2mg of Prednisone now and see how it goes. I am very weak. Has anyone experience with this new diagnosis that had originally looked like Lupus and was called PMR and now Connective Tissue Disorder. I am 71 and before this an active and healthy looking person.

[Horsewhisper]

Hi Ronswife, I was diagnosed with Undifferentiated Connective Tissue Disease 2 years ago. It is an autoimmune condition that doesn’t quite meet the full criteria of Lupus or Scleroderma, but is a condition in its own right. I had GI symptoms, muscle weakness/stiffness, joint pain, sun sensitivity, brain fog, dry eyes, Raynaud’s style symptoms, fatigue and the symptoms were kept under control with meds. In March this year I was diagnosed with GCA and I am currently on Pred and Methotrexate. By all means take a look at the Lupus UK website or hop across to the forum from Health Unlocked where you will find loads of really useful info and lots of lovely helpful people, similar to this forum. I am sorry to hear that you feel so weak, it may be to do with the symptoms and perhaps the shock of hearing about a new diagnosis. I have had to adapt to a new normal living with both of these conditions which we means a slower pace of life and just spending the energy that I do have with the people that matter and on the things I enjoy the most. I hope this helps xx

[Ronswife in reply to Horsewhisper]

I appreciate your thoughts on this new diagnosis. Is this diagnosis trending because of a new blood test? I want to have my life back. Sorry to hear what you are struggling with too.

[Horsewhisper in reply to Ronswife]

Hi Ronswife, I don’t think there is a new blood test for Connective Tissue Disease, it’s a term used to describe an autoimmune disorder characterised by features displayed in diseases like Lupus, Scleroderma etc. There are treatments to help alleviate symptoms of CTD such as Hydroxychloroquine - has your Rheumy started you know this yet?

[PMRpro Ambassador]

I agree with Horsewhisper - go and have a look at the LupusUK forum and site.

It sounds as if they were never sure originally - and undifferentiated or mixed connective tissue disorder can look like PMR and may well respond to pred. Are all these options for diagnoses from the same doctor?

[Ronswife in reply to PMRpro]

This is a different doctor than the first who saw me with the worst symptoms.

[Hidden]

Hello, I am in a similar situation to you right now and am feeling quite low. About a month ago I was put on 20mg pred and this successfully eliminated nasty PMR-like symptoms. I was told to start a slow taper process whilst waiting for a rheumy appointment that was likely to be in around 6 months time. But this week I had a surprise phone appointment where she told me that she suspects mixed connective tissue disorder, not PMR. I now have to rapidly come off pred (reducing 5mg per week) to reveal all my symptoms for a face to face appointment in July. After dropping to 15mg for just two days I already feel exhausted and I sense a gradual increasing pressure in my shoulders - just a hint of the pain that's coming my way soon After coming across this helpful, supportive forum I am really sad that it might not be "home" for me anymore. Everyone is so knowledgeable and supportive! But I'd be very happy to keep in touch with you to share experiences of dealing with this new diagnosis. My rheumy wants to try me on hydroxychloroquine, have you had this suggested to you?

[PMRpro Ambassador in reply to Hidden]

We won't throw you out and we do know about the problems of living with a chronic disease which are much the same whatever it is.

LupusUK are a lovely lot with quite few MCTD/UCTD patients - do go and visit.

[Hidden in reply to PMRpro]

Thank you, I will give them a try!

[Horsewhisper in reply to PMRpro]

Hear! Hear! Lots of common overlap with all things autoimmune and long term health conditions - the journeys are quite similar, I agree.

[Ronswife in reply to Hidden]

Susie, this pain feels like the PMR I was diagnosed with 4 years ago so I wonder why there is a new diagnosis unless the doctors see it as something slightly different and it worries me that it will never end. Or is he questioning what another doctor saw originally now that bloodwork has changed.

[PMRpro Ambassador in reply to Ronswife]

While the pain may be like what you had 4 years ago - the diagnosis 4 years may have been incorrect. Quite high proportion of PMR diagnoses turn out to be incorrect - there being no definitive test for it. PMR is not the disease - it is the name given to a set of symptoms caused by an underlying disorder, and there are several.

Looking back at your very first post - they didn't really appear to know what they were doing then! Osteoarthritis doesn't show up in blood.

[Horsewhisper in reply to Hidden]

Hello Susie, I have CTD and GCA - I hop between the Lupus Forum and here and find both communities equally supportive, informative and very friendly. Do come and take a look - I’m sure you will get a warm welcome! 👋😊