Undifferentiated connective tissue disease.

[Haylz2109]

Hi all me again, Hope you're all as well as can be 💕

So since I've last posted I've had a colonoscopy with 12 biopsies which all came back clear thankfully, I have also travelled all the way to birmingham to be seen in the centre or excellence there.

I am feeling quite disheartened after this and wondering where I go from here, the reason being is this professor said exactly the same as what the professor I saw back in march said and it just felt like a wasted journey if that makes sense?

Meaning they still can not diagnose me as my bloods aren't showing what they need to be able to put me into a box so now it's still undifferentiated connective tissue disease and I have no clue now if I'll be starting steroids again until I can go onto Azathioprine or what but I had to go to the appointment as my rheumatologist would not do anything else for me until I'd been seen by this second professor in birmingham.

Don't get me wrong I'm grateful that people are willing to see me and try to figure out how to help it just feels as if my rheumatologist would not accept the first professor saying exactly the same (he had also worked in the birmingham centre previously).

I also had problems a couple months ago where I went into a and e due to severe pain in my hips where I couldn't walk, sleep or sit and it showed that my white blood cells were high along with platelets but no one brought this upto me until I went to see my gastronologist a month later.

I just feel like everything is getting on top of me again because I don't know the next steps or what this means for the future without a specific diagnosis.

Sorry for the long post but thank you if you made it this far and for any responses. 💕

[Tonkie]

hey!

Another UCTD here. I’m being treated for Lupus and Rheumatoid with Methotrexate injections 20mg and Hydroxychloroquine. I’ve had 18 months of investigations and still no further forward. I used to get very upset and overwhelmed with not having a definitive answer, but I noticed what an impact this was having on my mood. So I’ve tried to ‘let go’ and go with the flow. Regardless of what I have, it wouldn’t change the treatment plan. I’m just happy I’m not on steroids every few weeks now. My last course of steroids was February and haven’t had anymore until now (house move)

I’ve started looking after myself more. I exercise, do a lot of self care, eat healthily and I’m trying to get my sleeping under control. I know all of that sounds cliche but it really does help. I still have very bad days but they’re not as frequent now.

You can drive yourself crazy looking for answers with this disease. Even now I have no idea what is causing my joints to act up this week. So I’ve just learned to look after whatever problem I’m having that day and live the best life I can with this disease.

I know it’s not what you want to hear. Some people stay in this category their whole lives. Until there is more evidence of either Lupus or Rheumatoid in my case this is the box I’ll be in. Don’t lose heart, it is a recognised disease, we are still entitled to the treatments and help those with a definitive answer have.

Try to find a medication that works for you and make your life as easy as possible with lots of rest and R&R.

Take care

Toni

[Haylz2109 in reply to Tonkie]

Hi Toni sorry for the late reply been a bad few days, my issue is I'm not the one pushing for a diagnosis I understand if it's uctd I just want treatment as being untreated I'm in a lot of pain and struggling. It's been 4 years of investigation for me and I'm not even the one pushing for it I just want treatment to be able to live a normalish life with my children instead of missing out. I'm glad to hear you've found something that works for you and allows you to do the self care side of things, I try my best every other day to make sure I'm walking but I do really struggle with a lot of hip pain which makes this harder whilst off medication.

It seems as though my rheumatologist keeps pushing for a diagnosis yet 2 separate professors have now told her the same thing yet she's holding back on getting the treatment sorted which is then causing me to flare and obviously makes me struggle day to day.

I definitely agree with the self care aspect of things it's just harder to do when I don't have the illness under control.

Thank you for that information though, nice to know I'm not alone aswell.

Thanks,

Hayley.

[Tonkie in reply to Haylz2109]

Oh gosh I didn’t realise they had left you unmedicated - sorry I must have misread - my head isn’t what it used to be!

Is there any way you can see your GP and ask for second opinion? I had to do that as my first rheumatologist messed me around like crazy. Gave me the drugs then tried to take them (and my diagnosis!) away. I’m at a much bette to hospital now with a clean slate. Different rheumatologists have different ways of working and some are very anti-meds unless they have the definitive answer. Which is no help to you. I completely sympathise with your position. I have 3 children and even with the meds I am still very limited and struggle. My partner has to support us all. But the meds have stopped some of my symptoms so I have to be grateful I’m a lot more able now.

Is there any way you could go privately? Just as a one off? Start with your GP and tell them you’re not happy and you’re suffering. Keep a symptom diary and take lots of photos of anything you want them to see. The only way I managed to get the meds was them seeing the swelling on a scan - but I had 2 scans beforehand which showed nothing. It’s very frustrating and I understand your pain. Let us know what happens and I’m wishing you the best of luck with getting some medication.

[Haylz2109 in reply to Tonkie]

Don't apologise it was a long post lol yeah I've been unmedicated for a few months now which is making things really hard. Well tbh my gps aren't great with this because it's over their heads and the first rheumatologist I saw left me with a fibromyalgia diagnosis and dismissed then I went private who didn't bother coming back to me even with me chasing them up as he was set on it being sarcodosis which it isn't.

Since then I think I've seen about another 3 or 4 rheumatologists 2 being professors who have given a treatment plan but my rheumatologist just seems to be holding back and I've no idea why. I'm hoping I'll get something in the post this week from the birmingham appointment I had a couple weeks ago.

Thank you, it is so much harder without medication when you have kids like I can barely get out of bed most days but with steroids etc I can do at least the minimum with help from my partner which is all I want really as before my 2nd child I was able to do everything myself for my first born. I'd be happy just to be able to go on walks with them without the repercussions for the next few days after.

I did keep a diary etc for the first 2 years of this going on however now I'm on year 4 it's just tedious and they don't care to look over it so now I only take photos and videos or evidence to show especially when it's new symptoms. I've had every test known if I'm honest, numerous head scans due to them thinking I had m s to begin with then I had numerous liver scans along with liver biopsy, lip biopsy, nuclear bone scans, colonoscopy with biopsies, countless blood work, to the point where even my gp said that he does not think there is any test I physically have not had.

I'm definitely glad to hear that there is some hope once I'm on the right medication I'm mainly disheartened it's taken this long and yet I'm still feeling like I'm back at the start.

Thank you for that i really appreciate it,

Hayley.

[Tonkie in reply to Haylz2109]

I also went through the trauma of every test under the sun and getting misdiagnosed for ages. Then they put it down to your mental health. It’s so disheartening and upsetting you aren’t alone. I’m sorry this is happening to you. My tests show nothing either only that one scan.

I’ve read countless battles on here and it isn’t right. I’ve been lucky in that respect that it didn’t take me too long to find someone who listened (and cared). But before that I had to sit in a room of !6! Rheumatologists and be patronised and told there’s nothing wrong with me, it was bloody traumatic and has stayed with me since. They do not realise how much power they have over your life, your head and your quality of life.

I can’t imagine how deflated you feel. The frustration of not being able to do what you used to do is heartbreaking but it’s even worse when there are little ones you feel like you’re letting them down (you’re not!) you’re doing your best with the hand you’ve been dealt.

Don’t give up and I really hope something comes of your most recent appointment. Keep fighting, brighter days are ahead.

Toni

[Haylz2109 in reply to Tonkie]

I'm sorry to hear you've been through the same it is so disheartening especially when you have certain gps who don't believe it because there is no diagnosis as such to the point where I now refuse to see them because of the effect it has on my mental health. I'll be honest the rheumatologist I'm under now is the first one who listened and agreed a trial of steroids etc it's only in the last few months that she seems to be more reluctant about help etc whether this is down to the pressures or that she does not want anything to go wrong I don't know.

I'm sorry to hear you went through that it sounds horrific especially when you're trying to fight your corner. Not like we want to be ill or anything we just want the help we need.

Thank you for that it really is comforting to know I'm not alone and not the only one who feels like this especially with the little ones etc.

Thank you lovely I really appreciate that. 💗

Let's hope now things will get sorted it's just upsetting and draining that it takes so long and we have to fight so hard for it.

Hayley xx

[Tonkie in reply to Haylz2109]

Wow are you sure we didn’t have the same woman? She sounds under confident. My first one was. I’m in Manchester where are you?

Do you get any swelling at all? If you can get a scan when you’re swollen they gave me the drugs straight away. Then when I got a weak ANA they gave me even more.

Always around if you need to vent. I understand the frustration of trying to get through this whilst also trying to be part of the family. It’s exhausting xx

[Haylz2109 in reply to Tonkie]

It does sound similar doesn't it lol unless they're all told the same script! I'm in Wales. I do sometimes get swelling in my hands but not often and they didn't scan my hands until my pain had subdued typical.

It gets me so confused because my liver enzymes have been high for years which is why my gastro keeps pushing things as he believes it's lupus and autoimmune. Then when I went into a and e I had elevated white blood cells and platelets yet no one mentioned that to me at all there and it was only afterwards I found out and that wasn't even from my normal rheumatologist crazy!!

I'm glad you managed to get things sorted and caught it at the right time to show. I've had so many signs just no the right ones to pin it down correctly. Thank you for that I may take you up on it sometime 💗 same goes for you too 😊 xx

[StriatedCaracara]

It may be worth watching Dr Donald Thomas' new blood tests video (link at end of this reply) . I too am diagnosed with UCTD.

Testing at the moment is not sufficient basically. Tests are ancient, and better ones are available.

Far more money is being spent on drug research than on improving blood tests.

The criteria used for research stipulate blood tests that could have been replaced by better testing. They stick to using outdated tests because of research that makes money.

The system is broken. It is sad that even a Centre of Excellence did not help. Shows how bad things have got.

I had to go private without insurance. I think I am getting better treatment now than many lupus patients having done this, because in NHS protocol may not be so patient centred, but more to do to do with reducing costs and maybe research incentives etc. It must be hard for doctors having to follow protocol they know could be improved.

I'm on 300mg / day Hydroxychloroquine and 50mg Mepacrine, another antimalarial, three times a week. My flares seem to have gone, I have more energy and am less photosensitive. I have not needed short courses of steroid this year. I have not heard of this treatment being available widely on NHS unless dermatology involved also. It was used at Guys/ St Thomas' following Prof Hughes and his team using the combo very successfully. Begs question why others don't use the combo..probably does not tie in with research so drugs escalated to immunosuppressive instead.

It is worth listening right to the end of the video.

Take care.

Maybe in a few years they might be interested in us UCTDers also when they want to expand their drug market. Then they might incorporate the new blood and urine tests that are available now, who knows.

healthunlocked.com/lupusuk/...

[Haylz2109 in reply to StriatedCaracara]

Hi sorry for the late reply been a bad few days. Thank you for that information I will definitely take the time to watch that video and hopefully that will give me more insight.

I did attempt to go private back at the start of my testing however they did not follow up afterwards and seemed to be set on sarcodosis which it is not and even with me chasing them up they didn't get back to me numerous times.

I am so glad to hear you have found a treatment that works for you, I did trial hydroxychloroquine once but that did not work for me unfortunately and colchine but steroids seem to resolve my flares and issues so now the professors want me to trial Azathioprine however my normal rheumatologist seems to be holding back. Fingers crossed the testing does get better as this is after 4 years of struggling and I'm still not on the right treatment plan to help.

Thanks for all your information,

Hayley.

[CecilyParsley]

Hi Haylz, I am so sorry that you feel so disheartened but having gone through similar myself for12 years before my current diagnosis of “Bechets, not ruling out Lupus” I now feel that it is the treatment that matters rather than label that matters.

I remember when first told I had UCTD my response was is that a made up diagnosis . I had to consult Dr Google before I accepted it was as I genuinely thought I was being fobbed off. Many people here have been diagnosed or are still diagnosed with it so you are in good company.

I hope you start to feel better and get good treatment to get your flares under control xxx

[Haylz2109 in reply to CecilyParsley]

Hi Cecily, sorry for the late reply been a bad few days.Thank you, like I've said before if I can't get a specific diagnosis then I'm fine with it aslong as I get the right treatment but it seems as if my rheumatologist was holding back as she would not treat me until I had this 2nd professor appointment in birmingham yet he's said the exact same thing as the previous professor I saw back in march meaning I could of already been on Azathioprine and possibly had less flares or problems as there's always something going on and it's so hard just relying on painkillers that don't really help the issue.

I think the biggest thing for me is because I'm not on the right treatment I've now lost my job over it and I'd been there almost 14 years but being unstable I could not do my job correctly (high pressure, fast paced and stressful role) so even though I've been given the uctd diagnosis more than once my rheumatologist just seems to be trying again and again to get a more specific diagnosis prior to treatment.

Thank you I really hope so too, Hope you're doing better now with your new treatments.

Thanks,

Hayley xxx

[CecilyParsley in reply to Haylz2109]

Oh Hayley I am so sorry that you lost your job. Bless your heart. Did Occupational Health not suggest a plan for you? I know when I got sick I limped on for a year or so but then when hit with a massive flare I was working as an Agency worker so no sick pay or ill health retirement. It was a very stressful time so you have my sympathy.

I haven’t been able to start my treatment. Long story but basically the bladder and bowel nurse put ne on five laxatives a day and my gut seized up completely. I was in A& E until 2.30 on Friday morning and I am still not moving so emergency GP on Monday it will have to be. Then today I got a letter from my surgery, after having rung three times to get my urine test results and being told they hadn’t come back. I have got a UTI so just as well I did not start the Dmards.

Life isn’t easy for us. I truly hope things improve for you xxx

[Haylz2109 in reply to CecilyParsley]

Thank you, I did try and push on at the beginning but I lost my voice etc over the stress as at the beginning they thought I had fnd (functional neurological disorder) and unfortunately now it all just came to a head where they could not offer me flexible hours based on how I am etc and things so it wad just unfortunate. The amount of flares I'm having recently I'm no good to anyone tbh.

Oh no I am so sorry to hear that Cecily 😔 that sounds horrible. I hope now you manage to get back on track which will allow you to try the new medication 🤞🏻 just typical you had to continue chasing them etc.

It really isn't is it, fingers crossed now somethings got to give. Xxx

[Baci123]

Good morning Haylz2119

Thank you for sharing your experience with us. I do know how frustrating and disheartening it is to go through all those tests and appointments without a clear diagnosis, I’am in the same situation.

It's completely understandable to feel overwhelmed, especially when we're dealing with such uncertainty regarding our health.

It's great to hear that your biopsies came back clear, but I know that doesn't alleviate the stress of not having a specific diagnosis. It sounds like you're doing everything you can to seek the right care, and it's important to keep advocating for yourself. If you have any lingering questions or concerns, it might be helpful to reach out to your rheumatologist for clarification on the next steps and treatment options, you must insist with the rheumatologist.

Please remember that it's okay to feel how you're feeling; you're navigating a tough situation, and it's important to take care of your mental and emotional well-being, too. If you ever want to talk or vent, I'm here for you.

Take care of yourself, and I hope you find clarity and the support you need soon❤️ please take care of yourself ❤️

[Haylz2109 in reply to Baci123]

Hi Baci123 thank you for that, it is so frustrating isn't it? It's comforting to know I'm not alone in this. Thank you, yes I'm always glad when things come back clear because as you know we don't exactly want something wrong but like you say it's also hard when it then doesn't prove what is needed to get the right treatment.

I am trying but the worst problem is recently I've been feeling so so on certain days so I've pushed myself to try and walk (I'm really trying to lose some weight ready for a wedding next year) and hoping that this helps overall. I don't believe I'm massively overweight but the professor I saw seemed to be claiming it doesn't help when I saw him. Problem I have from this is it's now sent me into a flare where I've had migraines and severe joint pain again along with numerous other symptoms.

I am definitely trying my best to advocate for myself, I chased up my last appointment last week as I'm still waiting on the letter and then I rang my normal rheumatologist this morning to find she's off on leave so no idea when she will come back to me. Due to how I'm feeling I did end up ringing the advice helpline so hopefully they will come back with something to help in the meantime whilst I wait for all this to get sorted.

Thank you I really appreciate that and will probably take you up on it sometime.

It's good to know that we have this community here as everyone is so supportive and helpful I can't thank everyone enough.

Thank you again 💓 Hayley xx