Undifferenated connective tissue disease??

[Emma020884]

I was diagnosed with raynauds about 8 years ago was told it was primary raynauds and have just got back from rheumatologist after experiencing new symptoms (attacks in summer) that I now have undifferenated connective tissue disease as my bloods ionly show a slight positive and with my symptoms diagnosed me under this? Anyone have any advice please?

[Edesmaz]

Hi Emma020884,

It sounds like we have my case very similar cases. I was diagnosed with Raynolds about 6 years ago, my symptoms began to change over the years and I was then diagnosed with undifferentiated connective disease. I was put on Hydroxychloquine about 4 years ago and I have felt that it helps a lot. My symptoms can range from feeling incredibly ill like I was coming down with flu, body pains, extreme fatigue, headaches, exhaustion, brain fog along with the Raynolds which can be daily even in the summer. My symptoms have worsened recently and my rheumatologists are looking into other options. I have had two steroid injections now and they made me feel amazing and gave me a new lease of life, unfortunately it didn't last as long as it was supposed to so now they need to maybe give me something else, which is a real shame. I've got an appointment in the next couple of weeks so I guess I'll find out what the next plan is for me. I hope you will start to feel better once you have been given the correct medication.

It's been nice to find someone else who has the same diseases as myself. I've found that I haven't come across anybody else who seems to have undifferentiated connective-tissue disease.

If they do put you on hydroxychloroquine I recommend you give it a try, it can make you feel a little sick for the first week or so but it's worth persevering with.

If you need any other advice, info or just a chat let me know.

Good luck!

[Kingfisherblue in reply to Edesmaz]

Also with hydroxychloroquine watch your eye sight. Within a few weeks of taking it my eyes and vision started to play up. I now have regular check up with the eye clinic because I am on this tablet. Told I cannot come off it.

I was just one of the unfortunate ones that had eye trouble. It is in the side effects.

[Emma020884 in reply to Kingfisherblue]

She told me about an affect ur eyes and to go for regular check ups

[Kingfisherblue in reply to Emma020884]

Thanks good Emma. It seems that not everyone is effected by this.

But the tablet looks like the only option.

take care Liz

[Emma020884 in reply to Edesmaz]

Thank u for ur reply she has put me on hydrochloroquine 2 a day to start I'm very nervous about taking the medication as my ana was negative and diagnosed me under my symptoms and a slight raised positive on one of my bloods (not sure which one it was tho)

[Jeeny]

Hi Emma I've got this too. I'm on methotrexate and Hydroxychloroquine and it seems to be controlling it. My symptoms are just like Edesmaz. There's a really great Facebook group who are very supportive. Search for Undifferentiated connective tissue disease ! People are really lovely , helpful and share their knowledge and experiences. It's a frustrating disease . No one has heard of it and it sounds very vague. But the symptoms are very real and debilitating at times. I'd say read up about it . All the best.

[Frankie86]

My daughter is on hydroxychlorine too any help advise snot connective tissue disease and scleroderma

[tracynoe]

I havde Undifferentiated connective tissue disease, vasculitis and secondary raynauds my rhuemy calls me complicated! I am on Mycophenolate mofetil prednislone and a few other drugs but they are the main ones, been on pred for 11 years current and lowest dose is 8mg Mycophenolate I take 1000mg twice a day and have been on that for 8 years now I was put on it after azathioprine gave me dangerous side effects and did'nt work properly.

[Zara-LouiseD]

I've had Raynauds - supposedly primary for 27 years and after at least 10yrs of suspecting mild lupus, I have just been diagnosed with mild connective tissue disease. I also have weakly positive blood results (but negative ANA) so diagnosis is based on presentation in combination with the weak bloods.

I can get Raynauds attacks anytime there is a slight drop in temperature- so that happens to me in summer too.

I intend to stay pharmaceutical free for as long as possible 😀 - always searching for alternative/natural solutions where possible.

It sounds like your Raynauds may be reclassified as secondary? Did your doctor not give you any advice or information on diagnosis? Mine likes to give me leaflets because I refuse his drugs lol

[Emma020884 in reply to Zara-LouiseD]

Hi there ur sounds very fimiliar to my diagnosis I also have normal ana blood results but weak positive on other blood (not sure which one it was) come out of there with my head spinning thinking why didn't I ask this n that, she diagnosed me on my slightly positive result and my symptoms all she gave me was a leaflet on hydrochloriquine which she prescribed, I got to have another blood test done in 3 'onths time when I go back to see her x