Autoimmune Disease Website

[RichardE]

Just found this website about Graves' and other autoimmune diseases (including vasculitis). Includes an interesting article describing Undifferentiated Connective Tissue Disease of which I knew very little about.

elaine-moore.com/Articles/A...

[Albasain]

I've just read the article about UCTD and found it very interesting, especially in view of my vasculitic condition. The symptoms I exhibited before being diagnosed with vasculitis was serious loss of weight, fatigue and fever which was hard to shake off. In diagnosis of Rheumatoid vasculitis, I was found to have systemic vasculitis, RF not necessarily RA, myocarditis and polyneuritis multiplex. My joints did not appear to be affected but the connective tissues and in particular the tendons connecting to the joints as well as nerve sheafs which suggested to me that it was the synovial sheaths and or fluid which was being affected by the auto immune disease. Progression of the disease follows similar lines as in the article.

I am seeing my rheumatologist in a few weeks and will raise this probability with him. It is possible that I may have UCTD as opposed to RV although vasculitis may be in addition to that condition.

[Hidden in reply to Albasain]

Albasain, sorry what RF stands for, may I ask, please? Excellent post, Richard. Many thanks.

[Albasain in reply to Hidden]

Rheumatoid Factor. It is found in the blood test that they take.

[Hidden]

oic silly me, thank you x

[RichardE Volunteer]

It interested me because I'd always seen UCTD as a bit of a cop out by the clinicians who couldn't give a definitive diagnosis. But it does seem to be a bit more complicated than that ! Should have realised really

But I was interested to see that some people with UCTD do go on to develop the criteria for a "proper" diagnosis, be it RA, Vasculitis, SLE, etc, etc. But many still stay with the diagnosis of UCTD because of the wide range of disparate symptoms that don't drop them into any one particular category.

I think this can be a real struggle for people who want to give a name to their disease and have a clearly defined treatment path. It seems that treatment is pretty much the same for UCTD as it is for most types of vasculitis. But I believe that with such a variety of symptoms and conflicting bloods there may be little room for randomised controlled trials into UCTD to enable firm treatment guidelines to be developed.

If you're interested in UCTD I found another interesting article here :

hss.edu/conditions_undiffer...

[Fennella02 in reply to RichardE]

Hi Richard. I used to think, just like you, that UCTD was rather a benign condition. I was diagnosed with sero neg SLE in 2001 but I was never as convinced as my consultant that I really fitted the profile. Fast forward 14 years and my condition continues to diversify and worsen. It is now SLE/UCTD which I totally endorse. I have the acute joint swelling etc of RA, the malar rash, non erosive joint problems, leucopenia and low complement of Lupus with nasal sores, respiratory problems and weakness of goodness knows what and no defining antibodies. I need immunosuppressives and steroids. It makes it hard to treat because the doctors have to consider the overlap all the time. The articles are very interesting, thank you for posting. Clare

[EOLHPC]

Yes, vvvv helpful & interesting link: many thanks👌❗️

[Hidden]

These two links make interesting reading thanks Richard. I do have a friend with this diagnosis and she seems to self manage her condition pretty well from where in sitting - not managing mine terribly well at all!

Mine was diagnosed in 2011 as Seronagative RA despite my low positive rheumatoid factor of 26. I already had Hashmimoto's hypothyroidism. At first my rheumy wasn't sure because the RA was masked by the effects of a steroid shot I'd been given. But it came rudely back in my hands and also as roaming polyarthritis. Nine months of this had settled in my knuckles and finger joints to form unmistakeable synovial swelling that can only, apparently, be RA he explained.

Two years on and the Methotrexate and Hydroxichloraquine seemed to have put pay to my RA in the form of synovial swelling of joints and tendons. But the parasthesia and the icy extremitities and fatigue, acute burning nerve pain at night and TMJ/ tightening in my nose and mouth plus effects of many drug intolerances on my anxiety levels have meant that I still have some very systemic thing going on.

Whether my neuro and rheumy consultants privately now class this as UTCD I don't know. I think that the idea is that once it has shown up as RA this stands as the primary disease, even if it goes into remission and other connective tissue problems surface and take over. So this, my GP says, makes mine an overlap condition rather than UCTD - but I don't seem to have positive autoantibodies for much so this stops them being overly concerned and means it isn't MCTD. MCTD would be to have several connective tissue diseases properly with positive RF and ANA or ANCA.

I have read that UCTD sometimes burns itself out or continues in similar mode without ever damaging the organs, nerves, blood vessels or joints. It can also go on to become a fully fledged rheumatic disease though but I think this is the less common outcome. Maybe Clare can set me straight on this?

Where I'm concerned I'm not sure how long this no man's land carries on for being treated only with steroids presently - having just had pancreatitis from my fourth DMARD, Azathioprine. When I'm feeling optimistic I tell myself that I really should try to be like my friend with UCTD - who works hard as a successful composer and musician and rests when she needs to and relies on Celebrex alone for pain and thinks hers is probably Sjogren's Syndrome.

When I'm feeling less optimistic however - this year - I find myself wishing it would come back rudely in my joints so that my rheumy can recognise it and I can move on to try the next more expensive rung of drugs called Biologics. Steroids heighten my state of anxiety about all my symptoms. One day I think it might actually sprout wings and become a recognisable CT disease again - either vasculitis or Scleroderma if not RA. But for now I personally see it as UCTD although this is not my official diagnosis.

[Fennella02 in reply to Hidden]

Hi Twitchy. All of the points you have raised about UCTD, I have come across on various websites. Many comment on its 'mild' course yet it doesn't feel mild to me. Mild disease also shouldn't require treatment with Mycophenolate and Prednisolone. I had expected the disease to burn itself out but, after 25 years and with dwindling hormones as presumably menopause approaches, it shows no sign of relenting, quite the reverse. Nor has it become a specific CTD. Nor has it caused damage to major organs (I think my resp problems are due to weakness primarily). It continues to throw new things at me and that makes it hard to manage.

I don't think I've clarified anything but that's because nothing about CTD's is clear and therein lies the problem . . .

[Hidden in reply to Fennella02]

Hi Clare - I do hope you understood that I was raising these points as the standard ones we are told about via Google - not because I think that UCTD is actually a mild or benign beast?

I am guessing that, as my GP says of RA, this is a vast spectrum. I can relate to this because my son is on the autistic spectrum with Aspergers and I know others who fit a much more classic and pronounced mould of Aspergers whereas his is very well managed and only those who are in his company for a length of time would realise that he has this syndrome at all.

It is all relative and you are probably at the severe end of UCTD or have overlap diseases as well.

In hospital last month there was a woman with Scleroderma and Ulcerative Collitis on my ward. She had suffered a heart attack at 40, kidney damage (Lupus) by 50 and has significant hearing loss and was in hospital following double Pneumonia. She has also had a form of Vasculitis. She takes Mycophenolate and Leflunomide as well as nifedipine, Illaprost infusions and heart pills and she is about ten years older than me - 62 or so.

So whatever I have is mild compared to hers - but then I'm extremely allergic and also I don't want to risk waiting to sustain this kind of damage before I get diagnosed with an overlap disease. The term "Mild" does not begin to cut the mustard for any of us does it really let's face it?!

[Fennella02 in reply to Hidden]

Twitchy, I'm so sorry if I sounded defensive, I certainly didn't mean to. On the good days, I feel lucky and on the bad ones, anxious. xx

[Hidden in reply to Fennella02]

Well you are more stoical than me Clare. On the good days I'm anxious but on the bad days when dropping steroid doses I'm downright angry and depressed. Today is a good day!

And you were being rightly defensive but I just wanted to make it clear that I wasn't belittling UCTD. My friend is at the easier end of the spectrum she will readily admit - and it has still shaped her life a lot and she used to work as a trained councellor so has been able to advise me on coping strategies. And equally she has seen my severe drug intollerences and thought "ugh no thanks!" X

[RichardE Volunteer]

I personally have a well defined diagnosis of HUVS (which is often seen as very closely related to SLE). But even with this diagnosis I have some quite different symptoms and problems to others with the same. I believe that the opinion is that HUVS is actually a collection of very similar but different diseases. And I wonder if this is the case for many of the CTDs and is also mirrored in the disparate symptoms of UCTD.

As I said earlier, I suspect that part of the problem with these crossover type conditions is that it is very difficult to find a large enough number of suitable patients that fit the neccessary criteria to take part in a randomised control trial. Such trials are the gold standard for developing a solid evidence base for treatment and without them the doctors are left without any formally accepted guidelines. The only option being to go with treatment plans based on the investigation of similar case studies and the clinicians' experiential knowledge.

I suspect that this compounds the problem for prescribing drugs. Each of the new biologics are targetted on specific parts of the immune system. So clinicians need to be confident that for any particular patient, their disease is being driven by that specific immune system mechanism before they prescribe. The cost of these drugs will obviously be part of the equation but equally the doctors won't want to give patients a drug may have unpleasant side effects and risks for no benefit.

But I do believe that it's beneficial for patients to become the "expert" in their own disease. The more you learn about your own symptoms, blood tests, the drugs you take, the possible side effects and possible treatment options, etc, the more you are able to have better conversations with your consultants. Not questioning their conclusions so much as being able to ask and better understand why they have come to them. And hopefully this will lead to playing a part in the decision making process for your own treament.

[Hidden in reply to RichardE]

Richard to be honest I find your post and comments more interesting and insightful than the web pages you have linked us to.

The point you make about the Biologics is actually the same as two hospital consultants explained to me recently while I was exasperatedly lying in a hospital bed after a long weekend under observation.

I expostulated that I seemed to be running out of options in finding an imnunesuppressant that I could tolerate. They both said that this wasn't the case at all - there are plenty more drugs out there but these are "big guns" and, with my allergic responses to date and the lack of clarity about the direction of my autoimmunity at present - my rheumatologist would not be keen to start me on anything else until he knows more about what he's treating.

If I'm minded to cut my rheumatologist some slack just now then I should heed what you and these consultants are saying about the targeted nature of these Biologics - as opposed to an all round immunesuppresant such as Azathioprone - which wiped the floor with my pancreas so recently.

I do agree about us becoming experts in our own diseases of course, but I also know that immunology is one of the most complex areas of medicine/ science. I never even took o'level biology! So it really does become a collaborative process I feel - with my instincts born of experience and their expertise working in tandem. Not that many doctors are willing to collaborate with their patients to get to the bottom of things I have found. And I say this as an inheritently collaborative person!

The reality for me is a disparate clutch of consultants who rarely discuss patients with each other - only see me once or twice a year - haven't got the time or inclination to explore possibilities or be particularly thorough and so are always looking at a balance of probabilities relating to blood test results and symptoms they can verify with their own eyes.

Two other points which I think might be relevant to this discussion; I was on a large international neurology forum recently and someone from the States was baffled that I spoke of Biologics as big guns. She has been told on numerous occasions that her inflammatory neuropathy would soon require "big gun drugs" such as methotrexate, Azathioprine or Leflunominde. She has already tried IVIG and Ritiximab (a biologic) but the basis of this is about the relative toxicity and potential side effects - not about the economic expense. I thought this interesting because I've noticed that the biologic drugs and mycophenolate are relatively well tolerated by many friends with RA, Lupus and Vasculitis compared to the cheaper cytotoxic DMARDs.

I would like to suggest that a large scale research trial could be undertaken into UCTD and MCTD/ overlap by a university/ hospital - and perhaps HealthUnlocked could play a role through communities such as VUK, Lupus UK, Thyroid UK and NRAS, Pernicous Anaemia, Raynaud's and Scleroderma - where I have come across so many with these variations and mixtures of connective tissue diseases. It seems we are the ones who often continue to haunt HU because we are in a kind of Nomansland. I would have thought there must be plenty of us around in this limbo of half diseases who would happily be part of research trials.

[RichardE Volunteer in reply to Hidden]

Thanks Twitchy. I'm always looking for new resources on the internet but as you say, this post has generated some really interesting comments.

Talk of expert (or maybe 'informed') patients is something that seems to be gaining more relevance and importance. Just today someone pointed me at the European Patients‘ Academy on Therapeutic Innovation (EUPATI) website :

patientsacademy.eu/index.ph...

This is a group that's all about enabling patients to better understand medicine research and development. I've not had much time to delve very deep into what they're all about but it seems very intersting.

Like you I have no biology qualification as such and as you say immunology is a complex subject, especially when they're digging down at the genetic level. But I do believe that; taking an interest in your disease, trying to learn the basics of your blood tests, understanding what's normal and not for you, learning about the drugs and the possible side effects, simply allows you to have better conversations with the clinicians. Like you say, I think it helps you to collaborate where possible and at least in my experience, I think the clinicians appreciate having a patient that wants to be involved in their own treatment.

I do sympathise with you over the issue of non-communicative consultants though. I'm quite lucky that my main Rheumatologist is very proactive in his communication with other teams. But obviously this is not always the case and it can end up putting the responsibility back on the patient to keep chasing up the different clinicians to get them to pass on information to each other.

I go along to my local Clinical Commissioning Group public meetings where there is currently quite a lot of discussion around new care models for patient centred treatment. In my area at least, they do seem to realise that you need a continuity of care and communication in treating complex long term conditions. To the extent that they are planning to introduce named people (possibly GPs or specialist nurses) to coordinate care and communication. In effect to be a single point of contact and an advocate for the patient. I'm a bit cynical by nature so want to see how this all actually works out. But so far they seem to be saying all the right things as well as actively canvassing patients for input.

Regarding tolerance of drugs, I'm on Mycophenolate myself and have no problems. But I do know people who have struggled with it. So I think it can be horses for courses. But I really sympathise with your allergic reaction to so many of the drugs. That must make things doubly difficult.

I believe that the new biologics are more directly comparable to Cyclophosphamide as they tend to both be used to induce remission. Although steroids and the older DMARDs are still often used as well in order to maintain remission. In terms of longer term risks I think they are still waiting to see how things go with the biologics but I have heard consultants say that evidence is building that the biologics are significantly safer than Cyclophosphamide.

I think that Cyclophosphamide is the real cytotoxic drug with the DMARDs being 'relatively' safe (as long as you're not allergic to them). I think infection is the most common risk for DMARDs although that can probably be said of all of the drugs used. But steroids are still the nasty one in the pack with so many potentially damaging side effects, especially when they are required long term and in high doses. I think that DMARDs are sometimes refered to as "steroid sparing" drugs simply because they can allow patients to taper off the steroids either completely or at least to safe levels and still maintain remission.

It does sound like more research is needed into UCTD, MCTD & overlaps although I'm not sure what body would take up such a cry. I'm not aware of any charity or support agency who champions these causes but then I've tended to focus on vasculitis myself anyway. It'd be interesting to hear from anyone who knew of an agency who campaigned for these diseases that might become involved in championing the idea of more research into them.

I've had a quick search but I can't find any current research in the UK, at least not on the UK Clinical Trials Gateway :

ukctg.nihr.ac.uk/

I have found a UCTD registry project in the US but I imagine this wouldn't be open to patients in other countries :

clinicaltrials.gov/ct2/show...

Anyway, that's quite enough chuntering from me for one night Hope this has not been too boring and is of some interest / use.

[orsen-trapp]

Rather too many inaccuracies for my liking, eg: '◾Giant cell arteritis, which primarily occurs in patients younger than 50 years with a recent history of headaches'!

[RichardE Volunteer in reply to orsen-trapp]

Aye, I noticed that. Just goes to show it makes sense to not rely on any one website alone but to cross check with a number of trusted resources

[orsen-trapp in reply to RichardE]

Even the page to which you linked is somewhat unreliable about autoimmune diseases/disorders. Almost as though the articles have been cut and pasted without the author necessarily understanding what they're writing!

[Hidden]

Thanks for that link Richard, I've added it to my bookmarks.

[Hidden]

Certainly not boring at all Richard - quite the reverse! I do think in some ways I'm lucky that my connective tissue disease showed up as RA to begin with. Friends from this and other communities seem to fare so badly when there is no primary disease for the specialists to use as a starting point for treatments.

For me it's a question of whether my longstanding and painful peripheral neuropathy, GI issues and now the mouth and jaw issues are part of my unusual RA or are in fact some type of ANCA negative Vasculitis or other overlap stuff perhaps.

I must say that the idea of Cyclophosophmide fills me with trepidation - it does sound like the grand master of cytotoxic. I don't think it's used for RA and nor is Mycophenolate - about which I do hear very good things.

I did ask the hospital consultant I was under about Myco - she happens to also be a nephrologist. She said it wouldn't be an obvious choice for me because my kidneys are okay. I do have one large irregular cyst on one kidney but this is so far benign she explained. I have friends on it who have no kidney involvement so wondering if this is just because she's a nephrologist?

She also explained that if my ANCA was negative this would probably rule out Vasculitis for me because, apart from GCA, ANCA negative Vasculitis usually involves the kidneys. These negative autoantibodies of mine are a pest I feel! It's not that I want any organ involvement or joint erosion of course - but I don't want to wait for it to happen in order to be treated either?

Prednisolone is doing my head in just now so forgive me for rambling in the early hours but my upper abdomen is really sore and bloated despite ranitidine and my mouth is painful and heart palpitating and I'm blaming steroids for this fair and square!

Twitchy

Ps and in the spirit of turning lemons into lemonade as you do - I volunteer for NRAS and also represent the public interest for a large Scottish health organisation. So I'm with you on the expert patient principle too and read your EUPATI link with interest.

However this work just hasn't paid off much for me in terms of my own health because they think if I'm well enough to do this volunteering, including speaking at last year's EULAR congress as a person with RA, then I must surely be okay really. Can't win!

[EOLHPC in reply to Hidden]

Just in curiosity: twitchy, am not certain, but: when I began on mycophenolate for SLE & typical secondaries, in jan 2014, the only myco info leaflet my greatly respected lupus & vasculitis clinic gave me was published by one of THE big UK rheumatoid arthritis assocs. (I'd have to dig the leaflet out to double check the exact name of the org). So, I assumed the purpose of the leaflet was to explain myco to RA patients.

Since then, I've asked at my clinic whether myco is formally approved for autoimmune conditions other than RA. My impression is that formal approval of myco for RA exists, but not for lupus yet. I'm in clinic again later this month and will ask again! And yesterday, an 80 yr old long time RA patient friend of mine phoned me cause she had wilfully ditched methotrexate after years injecting it - because she felt it wasn't reducing her symptoms enough + her chronic fatigue had become much worse over the past year (as far as I know she has no significant kidney probs). Anyway, after stopping metho, she detoxed for 2 months before her next rheumatology appt at which her consultant was v annoyed, but Immediately put her on myco (she'd forgotten I'd told her about myco...she didn't ask her consultant for myco. He simply opted for myco). Hmmmm

PS: have found that myco leaflet: it's from Arthritis Research UK, published 2011...and it specifies that "mycophenolate is used to treat several types of rheumatic conditions, including lupus, and diseases in which there's inflammation in the blood vessels, for example vasculitis...". My elderly RA friend has been diagnosed with RA for decades, but is convinced she has also been managing unrecognised SLE.

[Hidden in reply to EOLHPC]

I completely agree that many on the VUK and Lupus UK and Sclero communities seem to benefit from Myco Barnclown. But I can assure you that this drug is almost never mentioned on the NRAS community. I have spoken to helpline staff who have never heard of it before and looked for information about it on the site and it isn't mentioned at all. And this is a charity dedicated to RA with a lot of detailed information and research for people who want to know more about rheumatoid diseases. Even Azathioprine is an unusual DMARD now for RA patients to try.

The protocol for RA is that people try at least two DMARDs including methotrexate for at least 3 months. Many are tried on two or three simultaneously with goal being drug induced remission. If they fail to achieve disease control or can't tolerate these two and still have a disease activity score (DAS28) of 5.1 or over then they will be offered one of the anti-tif drugs - unless there is a history of MS or cancer. I don't meet the criteria for these because of lack of synovial swelłing in my joints now apparently. It's a shame because these biologic drugs are generally much better tolerated and can be very effective. But they are each targeted at some aspect of the autoimmune process I believe and I guess my rheumy will argue that until he has a clearer idea of where mine is going he can't make a case for such expensive drugs for me?

This is my present big battle I suppose - to either be re diagnosed with an overlap disease or to get my strangely neurological/ Vasculitic type of RA acknowledged and treated with an immunesuppressant I can tolerate.

The nephrologist stated that Myco is a drug used only for patients with kidney involvement but she was clearly wrong about this. But what can I do to get them all to rethink? X

[EOLHPC in reply to Hidden]

Exactly!

And, meanwhile, it's no fun (understatement, major!!!!!) being in the type of position you're in...even though you're not alone.

Having followed your wonderful posts from the outset, my sense is that you're at the cutting edge of diagnosis & treatment...and that things are moving your way...small comfort, though...

I wish you could see immunology....as you know, I'm another 'unusual & complex' case, and am now in the process of being assessed & treated by immunology. Several well informed autoimmune condition patients have told me they think this is where we should all start

[Hidden in reply to EOLHPC]

Yes I agree - in an ideal world we would have seen immunologists many years ago. In my case when I was a kid covered in swathes of eczema and with total alopecia barring a few tufts. But in those days it was all put down to anxiety by my parents - never saw so much a dermatologist let alone an immunologist! I still tend to blame psychological factors myself - hence slightly manic attempts to self heal with yoga and diet and periodic supplementing (having researched first).

Luckily my inflammatory markers all stand up for me but really that's all I have and it doesn't seem to be enough! X

[RichardE Volunteer in reply to Hidden]

I'll just pitch in here again

No, it doesn't seem like Cyclophosophmide or Mycophenolate are normally used for RA. But as Barnclown says, MYC can be prescribed for RA (there are articles on the web describing trials) and I think it may also be prescribed for some types of vasculitis, like Takayasus, that don't have kidney involvement.

But given your other symptoms Twitchy, I was also just wondering whether you'd ever seen a vasculitis specialist who wasn't a nephrologist, such as a rheumatologist or immunologist ? If not then you can always ask either your consultant or even GP to refer you to a nearby specialist centre. Has anyone ever considered Rheumatoid Vasculitis ? I think that rarely has kidney involvement and is a non-ANCA disease.

Volunteering certainly can be a bit of a double edged sword when you have an invisible illness and it can certainly bring stresses in its own right. But on the whole I think it can have a very positive effect on your mental health, if not the physical. Certainly I very much appreciate the time & effort that folk such as yourself put into volunteering.

Barnclown, I don't think MYC is actually approved for use in anything other than transplantation. And there's certainly no Nice guidance for SLE at the moment !

However, there is plenty of evidence for off-label use of various drugs, inc MYC, for SLE (and other CTDs like vasculitis). There's a Nice evidence summary here :

nice.org.uk/advice/esuom36/...

[EOLHPC in reply to RichardE]

Am glad you've continued to follow this today

GREAT DISCUSSION: many thanks

This really interests me & I'm v glad of your feedback re off label use of drugs (well, for my own peace of mind, I've especially had to look into myco since being prescribed it...you may recall that many of my Drs think my version of immune system problems (infant onset lupus et al) is mainly due to months of inutero exposure to the notorious artificial oestrogen DES (diethylstilboestrol), prescribed to my mother to stop miscarriage, although now it's used as a morning after pill, amongst other purposes...So, I am ultra cautious). Am v grateful for this link!

Apparently the FDA has big reservations about myco...largely due to an effect it appears capable of having on the brain. Even so, USA SLE patients are prescribed myco off label when their consultant can justify convincingly...rather like the RA prescribing twitchy has described

[Hidden in reply to EOLHPC]

Except that it really isn't used for RA at all BC. And the leaflet you were given on Myco by Arthritis Research is same type of publication I was given for Azathioprone.

Just to clarify (and no reason you should know this of course) Arthritis Research is not dedicated to RA at all. It researches all arthritic diseases and conditions.

NRAS is the only dedicated patient led charity in the UK for RA sufferers and has no info available on the site about Myco.

It's great that your 80 year old friend dumped MTX - which I took for two years by injection and had me spewing both ends for two days a week minimum.

But I just hope I make it to my70s presently as my lot tend to have their hearts pack in well before then! I don't worry about inherent drug risks

so much these days - only whether they will

cause me

pain and suffering or anaphylaxis or pancreatitis as three DMARDs did!

Xx

[RichardE Volunteer in reply to EOLHPC]

You're very welcome BC.

I've been on MYC for over 5 years now with few problems. But I am aware that it can cause a variety of 'interesting' effects in its own right.

I think, as with all these drugs, it's about the balance of risk. For me, MYC has been a wonder drug that brought me into remission. So the benefit outweighs the risk in my case.

[EOLHPC in reply to RichardE]

&, only 18 months on myco, me too: I'm feeling better than I have since my 20s in the 1970s thanks to a relatively low dose daily (1000mg per day)...except for the hypogammaglobulinaemia & predisposition to infections (which was already a prob from way back before myco)

[Hidden in reply to RichardE]

Such an interesting pitch Richard. I suppose i had discounted the idea of Rheumatoid Vasculitis because I don't have a very sero positive long standing or aggressive type of RA as is the norm for RV.

But I did read of someone who had very mild, early RA (and mine isn't regarded as early or mild) who was found to have RV when his gallbladder was removed and analysed after acute cholecystis. Sent this histology to my GP and he said he was interested.

I did see Scotland's main Vasculitis expert last year (you will know who mean I'm sure) for a second opinion. He confirmed RA through photos I showed him

And felt that the parasthesia was secondary Raynauds as part of my RA. At the time I was reassured and was back on Methotrexate injections and nifedipine.

He ruled out Lupus because of my age and lack of organ involvement. He said it would be improving by now as I'm 52 and post menopausal.

He was very good to speak to and the neurologist and nephrologist think I should see him again because my symptoms have progressed and we never discussed Vasculitis.

This was over a year ago. It was him who suggested Azathioprine as a possible alternative to MTX if I couldn't tolerate it. He said that I seem to have a very broad multi system type of RA but confirmed I would t qualify or get benefit from the anti tnf drugs unless the RA comes back as it first presented in my hands, wrists and knees.

I'm not sure if he would change his opinion now but both my neurologist and the nephrologist and rheumy all seem to fall back on his letter comfirmimg that this is rheumatoid and Vaso spastic (Raynauds) which I think is perhaps part of the problem for me now as this second opinion was made before the neuropathic pain has become so widespread and severe.

He also pointed out that I'm extremely allergic - always have been!

Thanks for your help and for this post. Sorry I've hijacked it rather!

Also should say that I'm hypothyroid with a TSH currently teetering towards Graves re your original point about UCTD/ MCTD.

[RichardE Volunteer in reply to Hidden]

I assume that's Aberdeen you're visiting Twitchy. I think I'd take your neurologist and nephrologist's advice and see him again. Worth seeing how he thinks your disease has progressed (especially if the neuropathic pain has worsened) and whether there are any other diagnoses / treatment plans to consider.

The other thought I have is that given your history of allergies, has anyone ever considered Hypersensitivity Vasculitis ? I think this can present alongside RA sometimes, although I believe it tends to be more skin related.

Hypothyroid too... more autoimmunity !

No problem about hijacking. This is probably one of the busiest and most interesting threads I've ever followed on HU !

[Hidden in reply to RichardE]

Yes it's such an interesting post I agree - thanks so much for starting it.

And yes to Aberdeen. The trouble has been that my health board pay for rheumatology service and the rheumatologist who comes up here is meant to cover all rheumatic diseases. My GP feels they would balk at paying for flights and the services of another rheumatologist. In common with many Scottish consultants I don't think he takes private patients so I need my rheumy to refer me to him again. My rheumatologist is

very

overstret

ched and has been made

aware of

my issues. But he wants to let the dust settle on my latest allergic responses and for my gallbladder to be removed as planned. He doesn't seem to have any plan to see me again at his next clinic though.

It's very much a case of me having to drive everything forward by email and this isn't helping my health at all!

Thanks for the hypersensitive v suggestion. This is what got me referred to the prof in the first place. But my hives turned out to be a reaction to HydroxIchloraquine and infected folliculitis turned out to be an allergy to nifedipine. Gosh what a pain in the ar*e I am - I drive myself nuts never mind my poor doctors! If I wasn't committed to my three sons, husband dogs, art practice and volunteer roles I don't think I'd be able to hold my head up much. And not much use on any of these roles just now as I tend to gravitate to my bed rather a lot! Thanks for this opportunity to offload but I really will shut up now as I want to give others with UCTD a chance to contribute.

[Hidden in reply to RichardE]

I have Rheumatoid Vasculitis, it is a systemic vasculitis but as you say, rarely affects the kidneys.

These two links should tell you all you need to know about it:

vasculitis.org.uk/about-vas...

vasculitisfoundation.org/?s...

Mine gives me a nodular prurigo type rash, among other things. Still learning about it as I was only diagnosed September 2014.

[EOLHPC in reply to Hidden]

I sure can relate to all you're describing...me too, twitchy...and, for what it's worth, we're not alone

In my case, it's the complements

+ lymphocytes + haematocrit + gammaglobulins that stand up for me....and it's the gammaglobulins that tipped my case over into immunology...still waiting for their first report + treatment plan

XO

[Pipp]

Hi, I have UCTD and would be willing to partake in a trial so count me in if one should come along please!

I have many symptoms leading to either a vasculitis or relapsing polychondritis as it's destroying cartilage in my nose and ears.

[Fennella02 in reply to Pipp]

Hi Pipp.

How interesting to hear that your U.c.t.d is destroying your nasal cartilage. Mine seems to be too and I now have a perforation in my septum. My rheumatologist simply said that it is not a feature of the lupus that I was initially diagnosed with and then topped it off with '. . and we know you don't have Vasculitis '. In his defence, once we had established that nose picking and cocaine were not to blame (?!?) he has referred me himself to ENT (apparently most referrals come via GP's these days) and has stipulated that I must see a particular Consultant so I guess he must be taking it seriously. Can I ask what destruction is going on in your ears?

Many thanks. Clare

[RichardE Volunteer]

Hi Pipp,

I won't interrupt your conversation with Clare but I'll certainly post up any interesting looking trials that I come across.

But if anyone wants to regularly check themselves, here are some links that are useful to find new and current studies :

The UK Clinical Trials Gateway :

ukctg.nihr.ac.uk/

NHS Choices also has a search engine for trials :

nhs.uk/Conditions/Clinical-...

There's also the UK Clinical Research Network database here :

public.ukcrn.org.uk/search/...

There's also the National Institue for Health Research (NIHR) INVOLVE database here :

invo.org.uk/resource-centre...

People in Research is another NIHR website here :

peopleinresearch.org/view-o...

There's a US based Clinical Trials registry (which includes European trials) here :

clinicaltrials.gov

And for more vasculitis specific research info there's the US based Vasculitis Clinical Trials Consortium :

rarediseasesnetwork.org/vcr...

I'd also recommend checking out your local hospital's website. Perhaps surprisingly (at least it was to me ) local hospitals often run and take part in a fair few trials so it's always worth looking. My hospital (which is not a particularly big district hospital) even has its own research public involvement social media community where they are trying to raise patient awareness and involvement in research.

Finally, you can always ask your consultant or even your GP if they know of any current research that you might be eligible for.

Hope that's all of some use.