Newly diagnosed - connective tissues disease

Bertie_brace2022

Hello everyone, my name is Jay and I am very new here.

I am 35 years old and have just been diagnosed with connective tissue disease (similar to lupus)

I am on a concoction of drugs and am new to another drug called hydroxychloroquine,

does anyone else here have connective tissues disease? It has taken nearly 12 years to get a diagnoses. I’m just wondering how you feel, what drugs have worked for you etc.

i suffer with chronic fatigue, chronic pain through out all my muscles which have caused me to have numerous falls etc.

I understand from my consultant that this is quite rare so it would be great to meet others with the same/similar conditions

xxxx

PeterJ

Hello @Bertie_brace2022 and welcome to the community - we are a friendly and supportive group and I hope that you will find that as well.

I understand that you have been diagnosed with connective tissue disease and have been prescribed hydroxychloroquine amongst other drugs. We would normally highlight parts of our website that might be of interest to you but as you say connective tissue disease is rare and we do not have anything specific to it. We do have the following though which may be of interest.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

https://www.versusarthritis.org/about-arthritis/conditions/lupus-sle/

I would recommend having a look around the website though as it contains a lot of information on conditions, medications and hints and tips - give the search a go.

Please do keep posting and let us know how you are getting on and I am sure that others will connect with you to share their support and experience as well.

With very best wishes

Peter

AndyT

Hi Jay,

I don't have a diagnosis but my Rheumatologist is planning to send me for some tests for connective tissue disease. Those are nail fold capilloscopy, and checking my blood for RNA polymerase 3 - have you had anything like that? As far as I remember there are a few variations of connective tissue disease. I have swelling and pain in my fingers, which has spread to my wrists, forearms/elbow, shoulders, feet. also Raynauds & circulation issues in my hands, all started slowly 2 years ago.

Must of been hard waiting 12 years to get diagnosed, I hope the treatment is going well and that you start getting better soon. Did you have any visible symptoms, swelling etc?

Andy

Bertie_brace2022

Hi Andy,

thank you so much for your message, it’s been a gruelling 12 years.

I have had lots of tests, firstly I had some specialists bloods done which showed I am producing the SAE 1 antibody. This is usually associated with a condition called mysositis.

I then had an EMG done where they put needles into the muscle, this was clear. I then had a biopsy done of my thigh muscle, this showed mild disease.

my consultant has diagnosed me with connective tissue disease undefrentiated which basically means I don’t quite meet the criteria just yet to diagnose me with myositis or lupus, although within 5 years I will be diagnosed with one of the other.

its a very lengthy process!!

my symptoms are, chronic fatigue, aching in all of my muscles, my knees constantly throb, I find it difficult getting up the stairs, getting up from a sitting position.

I am now on a double base morphine for the pain and acheyness through out my whole body.

I also take meloxicam which is a strong anti inflammatory tablet, steroids, and hydroxocloroquine which is an immune modifier drug. It can take up to 6 months to kick in.

Have you had any specialised bloods done as yet?

i really hope you get a diagnoses soon Andy.

xxxx

AndyT

Hi Jay,

I have had the usual suite of rheumatology blood tests again recently but they came back normal.

I had an ultrasound scan on my finger joints last week, they were looking for active synovitis but didn't find any. They weren't able to scan my forearms/elbows unfortunately. Just got to hope now that they arrange the further tests mentioned above.

I hope your treatments are starting to help now and that you get some relief.

Have you tried swimming for a low impact way if getting some movement/light exercise?

Calacake

Hi Jay

As your msg was recent, thought I would tag along too. I was tentatively diagnosed with undifferentiated connective tissue disease recently, I've only just started taking hyrdoxychloroquine which I am very wary of but realised I couldn't be in denial any longer! I get stiffness & pain in feet, knees and fingers & some swelling, & intense cold in fingers/feet. It's not all the time some days I'm fine, some days I can barely walk! And it can vary within a day as well. I had a bad fall (my first) a few weeks ago & gave myself a black eye! I've had periods of real fatigue as well but that has seemed much better recently. Anyway, just wanted you to know you are not alone! I get the impression that the experts don't have all the answers all the time so you just got to keep track of your symptoms & make some lifestyle changes. I know I need to lose weight so that is my next goal! All of this started in lockdown so I wonder if there is any connection sometimes. Wishing you all the very best & feel free to swap progression/drug experiences/despair/miracle cures etc if you would like to! ☺️ Cala x

Ellen

Hi @Calacake just a quick welcome (I don't want to hijack @Bertie_brace2022 's thread and interfere with your conversation). It's always lovely to see a new member's first post connecting with someone and offering their support.😊

I see you are taking hydroxychloroquine for your own connective tissue disease I am glad you have bitten the bullet and hope it really helps you.

I think most of us gained weight during lockdown and it's not easy to lose it with a MSK issue.

Best wishes and l look forward to seeing you posts in future.

Ellen.

Bertie_brace2022

@Calacake

oh my gosh - it’s so reassuring to know that I am not alone in this.

I have had a really bad week, fatigue and in agony. The doctors have changed my pain relief to longtec which is another opioid drug. I only started my treatment of hydroxychloroquine in February and I understand it takes a good 6 months to kick in.

how were you diagnosed? It has taken me years and years.

do you take any pain relief?

xxxxx

Bertie_brace2022

@AndyT

sometimes it’s worse when they don’t find something. I used to kick and scream (not literally) at my consultants as I knew there had to be something wrong with me. Keep applying the pressure on your Dr/Consultant. You know if your body isn’t right.

i haven’t tried swimming as yet, reason being… since taken the short course of steroids it made me gain weight and I’m now very body conscious!

They have changed my pain relief to longtec slow release, and I take shortec (quick release) as relief throughout the day. Not to mention all the other drugs there giving me. Hydroxychloroquine hasn’t kicked in as yet but that can take 6 months or so!! (If it works)

I really hope you find some answers soon Andy, I know what your going through but hang on in their. Keep trying and keep pushing!

xxxx

Bertie_brace2022

@Calacake

Apologies, I meant to ask! How long did it take you to get a diagnoses?

xxx

Bertie_brace2022

@Calacake I am so sorry, i thought i had responded to you. It has taken 12 years. Although i have undefreintaited connective tissue disease i have now been told i have myositis. Still going with the drugs but they dont appear to be doing anything. I am in the process of switching to a new immune modifier drug.

Are you any further with your diagnosis/Treatment?

xxx

Bertie_brace2022

@AndyT Are you any further with your diagnosis Andy?

xx

AndyT

Hi Jay,

Thanks for asking, the nail fold capillaroscopy & thermology tests I had came back as abnormal, I have damaged/abnormal capillaries.

Also found I have tendon friction in most fingers.

Still waiting for some extra blood tests to come back but they are suggesting it is likely Systemic Sclerosis, and or undifferentiated connective tissue disease.

My symptoms were slowly improving through the Summer, put on Nifedipine to increase blood flow to the hands/feet.

Had a few setbacks as winter appeared, some fingers started to get more swollen again with skin issues.

Nothing else they can justify giving me, as overall they say my health will be worse.

Now having routine tests for lung function & heart scan, too see if the disease is advancing/spreading. Last lung function test came back ok.

Day to day I can manage, just can't do heavy lifting/gripping anymore. I have to regulate my temperature carefully, to keep warm, but also being too hot creates painful swelling in the arms/hands. My feet, touch wood, are back to normal though.

Looking into UV light therapy, as I discovered they use it to treat various skin conditions.

How are you doing with your treatment now? Are you still on Hydroxychloroquine? Have you seen any improvement, are you able to do more?

Andy

Bertie_brace2022

Hi Andy

wow, so much has been happening for you Andy. Sounds like you’ve had a tough time with this, everything is just a waiting game isn’t it.. it’s so frustrating and now I know why it takes on average 10-12 years to get diagnosed.

well I was told last February I also have UCTD similar to lupus only to be told just before Christmas I actually have UCTD, fibromyalgia and a rare disease called myositis! They are also considering Sjögren's syndrome. Still on the Hydroxychloroquine which is doing naff all, I’m weening off my opioids (oxycodone) as I have become hyper sensitive and there causing me more pain, still take steroids when I’m in a hole and can’t get out of bed, not to mention all the other drugs I take.

I am going to start hydrotherapy soon and switch drugs from Hydroxychloroquine to Methotrexate.

I find it really frustrating that UCTD is not just one diagnosis, I think me and you are possibly quite complex and because symptoms overlap with so many conditions it’s so hard to diagnose exactly what it is..

I was going to ask if I can possibly have genetic testing but not sure they will go for that, although they do, do genetic testing for rare diseases..

I’ve joined the “wren project” also which are a charity, it’s like support and I have to say it’s really helped me along my journey, just nice to talk to someone who understands and doesn’t judge.

have you had the antibody blood test as yet? i tested positive for the SAE-1 and I had staining on my biopsy which seems to point more to myosotis than lupus so not sure why they told me I had lupus to start with.

do you manage day to day ok or do you also find simple tasks (like I do) a struggle?

xxx

Bertie_brace2022

Sorry Andy, I missed part of your message.

I am 35 and I feel about 90, I can’t even do my own hair now, my skin is so sensitive, I get cold very easily so most nights have a hot water bottle which helps slightly with the aching joints and swelling in my knees. My heart rate has weirdly started to increase, sometimes I think I’m going to have a heart attack. The fatigue is awful, I get home from work and I am done for..

uv therapy.. that sounds Interesting. I have not heard of that before but I hope it helps you.

keeping fingers crossed that your heart and lung tests come back normal Andy and I’m pleased to hear your doing better

xxx

Bertie_brace2022

@Calacake how are you doing now?

xxx

Woofy

https://community.versusarthritis.org/discussion/56933/newly-diagnosed-connective-tissues-disease

Hi Jay.

sorry to hear about your condition. I don’t know about this condition. I do know that the first meds I was given was Hydroxychloraquine, and I had some similar muscle pains, and a rash. I am now on Sulphsalazine and doing better on that.

I have R A. I’m still in pain, but not as bad as when I was first diagnosed. I had a fall on Tuesday this week whilst walking my dog over muddy woodlands, and I am in a bit of discomfort from that which doesn’t help.

just thought I’d mention my experience with Hydroxychloraquine. Hope your pain settles soon.

AndyT

https://community.versusarthritis.org/discussion/comment/703535#Comment_703535

Hi Jay,

Sorry to hear that you are still struggling , fingers crossed that switching to Methotrexate helps you. I believe a lot of people go through a period of being tried on different medication until they find something that works.

Do you get any support/allowances from your employer? I told my employer and they organised occupational health to assess me and they made recommendations of things to make performing my job easier.

I never understand why fibromyalgia gets diagnosed alongside connective tissue diseases, as Fibro is supposedly 'pain with no apparent cause' but there is always a cause when we have a diagnosis of a CTD via blood results or joint swelling/synovitis/damage/other test results.

I recently joined a group 'Scleroderma & Raynauds UK' which has a support group/forum like this one , on healthunlocked.com (which has other groups alongside it such as Lupus, & Rheumatoid Arthritis). Theres a few people on there that share some of my symptoms.

Somebody there suggested looking into plasma exchange treatment as a way to reverse auto immune disease. I'd not heard of that before, I still don't know much about it yet, it may be used on the NHS for some really specific diseases but guessing it would usually be in the private sector, might be worth looking into.

Hope you get some relief soon.

Bertie_brace2022

Hi Andy

I really hope it does something.. I am still waiting for my consultant though and we all know that can take months..

work do know and have copies of all my letters that state my condition(s) but haven’t really offered me any help. I’m glad your work have helped you though :) as your job physical and do they let you take regular breaks? I have an office job which I sometimes find worse as I’m sitting all day, my joints then stiffen up and when I do walk I’m so cranky.

I have had an OT come to the house to asses me and have just recently had another hand rail installed up my stairs, just gives me something extra to pull myself up on. They said I need to rip my bath out and have a walk in shower installed (not sure when that will get done) and they also provided me with a stick and a special crutch for support. I haven’t used the stick as yet as I’m having trouble swallowing my pride!

I try to keep going as much as I can, and as mentioned before I’m only 35! Feeling slightly anxious about the future. Not sure if you ever feel like this?

I too am baffled by the fibro diagnosis.. I think far too many people get fobbed off with this! I think the consultant was trying to say that due to the disease I have fibro as I suffer with wide spread pain. God knows Andy, I kind of give up second guessing now.

I am really pleased to hear you have joined a group, it’s so reassuring to know we’re not alone in this.

I am going to have a look at plasma therapy, I’m wondering if it’s the same as immunoglobulin therapy.

xxx

Bertie_brace2022

@Woofy

Hey,

Thank you for commenting, can I ask how long you were on it for and if you found it helped at all?

I started it last feb and was told to give it 6 months…?! It’s now nearly a year and they still haven’t switched me to another drug.

Do you get any side affects from the Sulphsalazine?

xxx

AndyT

https://community.versusarthritis.org/discussion/comment/703589#Comment_703589

Hi Jay,

Thats a shame that your work havent offered any help - I think my HR department got occupational health to assess me (albeit by phone) because they didn't really want to deal with it and they were more concerned with being legally correct to avioid any future comeback. I also do a deskjob most of the time, with occasional long periods of standing on the factory floor , which can be down to about 15°c at times. The only recommendations OH made to my employer was to provide ergonomic desk equipment like keyboard/mouse/desj supports etc - which they haven't done yet! Its on me to dress warm enough to manage in cold factory. At least my boss is understanding enough to not expect me to help out with shifting heavy objects etc.

Maybe worth looking into if your employer has to make allowances for you, and involve occupational health if you request it, especially as youve had so much input into your home situation.

I know what you mean about sitting for long periods, when my symptoms were at their worst i had to make myself go for a short walk around the site once an hour, to keep from stiffening up. I have since gone back to sitting far too long, finding it hard to motivate myself to move, probably since the weather got colder.

I also feel slightly anxious about the future at times, sometimes I wake up wondering if something is going to change today, or if my symptoms will revert to how bad they were a year ago. Although I feel if I can get through winter and not get bad again then I will have made progress with my treatments , so i have a milestone to look towards.

Fingers crossed that your medication change will work for you, I think you have to believe that it will too, and believe that you will improve in time.

Do you find that the time of year/weather makes any difference to you?

Xx

Bertie_brace2022

Thanks Andy, I will absolutely look into this with my HR department. I work for the university and they’re quite good at doing things… but… only if you ask for it!

I find that in the summer I improve but slightly, I don’t do well in the cold at all and it seems to heighten all my symptoms. I get more swelling in the summer though, particularly my knees!

how about you?

I have noticed that I have developed pain my thumb joints which is quite a new symptom so I will need to mention this to my consultant as he always asks about my joints in hands.

I also suffer with really bad cold hands and feet, do you also get this?

it sounds like your work are extremely understanding which is great.

can I ask, and I’m sorry if you have told me this before how long it’s taken you to get a diagnosis and are you happy with how your consultant handles things? I’m under the care of addenbrookes and I have to say I have got one of the best consultants, just always seem to get very confusing, medical answers! Lol!

xxx

Woofy

https://community.versusarthritis.org/discussion/comment/703590#Comment_703590

hi. The Hydroxychloraquine never worked for me. I didn’t see any results , but then had to come off of it after 9 weeks. The mouth ulcers were uncomfortable, and the muscle pain in my arms and legs only added to the pain. The rash is still faintly visible, but doesn’t itch anymore. The Sulphsalazine hasn’t caused any upset so far, and I’ve been on it for about 3 months. It has been increased though from last week. From next week, I will be taking 3 in the morning and 3 at night. I will still be taking my steroids for another two weeks.

Bertie_brace2022

Hi @Woofy

I have heard from a lot of people that hydroxychloroquine didn’t work for them either. I believe this is a very common drug that they tend to use first before being moved on to something different.

sounds like your hospital are a lot quicker than mine so I am pleased your new drugs are working ok.

Totally get what you are saying about the mouth ulcers, I started to get these but my consultant didn’t seem to bothered by it.

Do you take any pain killers also?

xxx

Woofy

https://community.versusarthritis.org/discussion/comment/703643#Comment_703643

Hi Bertie_brace2022

i had been taking Naproxen, but I told my Rheumatologist I didn’t want to take them anymore, as I have been on them over a year.

they were the meds my doctor gave me whilst I was waiting for a hospital appointment. They disturb my getting off to sleep, and upset my tummy a little. I haven’t found them to be that great at controlling the pain either. I’m on steroids at the moment whilst I increase my Sulphsalazine. If I hadn’t had the fall I had last week, I’d probably be pain free, I have hurt my ribs so I am a bit uncomfortable at the moment. Steroids are really effective at helping flair ups.

When I finish the steroids, I’m just going to take sal

AndyT

https://community.versusarthritis.org/discussion/comment/703630#Comment_703630

Yes part of my symptoms are secondary Raynauds caused by damaged capillaries, so my fingers and toes can turn blue/purple colour from poor blood supply, and then totally white in cold weather. I have been put on Nifedipine tablets for this, which relaxes the blood vessels slightly. Really effective for my feet, only slightly for my hands, i still have to wear a lot of warm clothing to keep my hands from turning purple/blue.

If you are getting cold hands/feet mention it to your consultant or GP, and keep an eye out for colour changes.

Yes some of my symptoms improve in the Summer, particularly the condition of the skin on my hands, I believe sunlight /UV rays plays a part in regulating skin cell problems and inflammation.

I guess it took about 2.5 years to get a partial diagnosis, initially fobbed off and went private for a couple of consultations which gave the NHS Rheumatologist a kick up the rear as they knew each other and ended up conparing notes. Im not sure I rate him still now, and have wondered about transferring to a different hospital.

I don't know if Ive mentioned it before, have you heard about diet changes helping or even stopping immune system diseases?

I have been gluten/dairy/high sugar/most processed food free (and low alcohol) for the last year, I think it's helping a lot and preventing me from my disease becoming more advanced.

I actually went gluten/processed free nearly two years ago, all my symptoms at that time cleared up after 4 months, but unfortunately at Xmas 2021 I slipped back into eating all foods again, lots of sugar and cakes/pastries and beer - a week later my hands swelled up and stayed that way for 4-5 months, raynauds returned badly and had bad joint pain all over and fatigue. Worst decison I've ever made. I'll never go back to eating those foods again.

Our immune system is in our gut, and there's a very thin membrane that prevents the wrong things getting into our bloodstream (i.e undigested food waste) if the membrane becomes compromised then the bloodstream gets contaminated, our immune system creates antibodies against these invaders, all of this gets circulated to all parts of the body, joints muscles and skin etc. - the immune system becomes overactive and malfunctions.