Finally getting somewhere... hopefully

[Mifford]

So I haven't posted in 4 months as I was waiting until I had something more to report.

I had my 12 week lupus anticoagulant follow up test and this came back positive again with a note that if this is not caused by lupus then it needs following up. The luoys unit have signed me off so haven't looked at it and my rheumatologist has left so I'm waiting to bring this up with the new one in a couple of weeks. I'm not sure it'll change anything or be treated but at least it should be noted in case it ever becomes relevant.

Today I saw the general allergy team at Guys and they were lovely. They dont think my reactions were what they would call true allergic reactions so they are the wrong department. To cut a long story short he has taken a load of bloods, is writing to say I need to specifically see Dr Gratton a d has written suspected MCAS over everything as he felt in his limited knowledge that mine would be one of the clearer cases where it would be suspected. He advised that a diagnosis is very difficult as it cant be tested for but was reassured that I care very little for the official label and more for the treatment. Hes started me on sodium cromoglicate and fexofenadine and advised that if these help it would be a very strong indicator that we are on the right road.

I've been hopeful that we were getting somewhere before and then had the rug pulled from under me so I'm trying very hard not to pin all my hopes on this but despite being both "interesting" and "complex" again it was nice to be seen by someone where my symptoms didnt seem to be totally alien to them and I wasnt made to feel like I was wasting their time.

So fingers crossed this has a positive impact and thank you so much for the help I had from here - it has been invaluable. And if this doesnt work then its at least something else to cross off the list I guess - eventually we'll get there if we run out of other options

[HollyHeski Administrator]

Well done and keep going x

[Jmiller623]

I feel for you Mifford. You sound a lot like me. I have lupus anticoagulant but not APS. Wound up being diagnosed with systemic lupus but it took a lot of labs and studies to reach that point. Hematology also suspected MCAS but tryptase was negative. I take a lot of fexofenadine (2-3x per day) and this has helped tremendously. Sounds like your docs are on the right track. I hope you find some answers and relief soon! ❤️

[Wittycjt in reply to Jmiller623]

Im a bit confused? You are positive for lupus anticoagulant but dont have APS or are you just asymptomatic?

[Jmiller623 in reply to Wittycjt]

Never tried to get pregnant so wouldn’t know if I would miscarry. However have a very strong family history of miscarriages on side with lupus. I’ve never had a DVT. Long history of migraines since I was 12. Had stroke like symptoms when all this started but MRI was negative. So no clots have ever been found.

30-40% of patients with SLE are aPL positive but don’t have APS. 50% of SLE patients go on to develop APS over 10 yrs. (stats from kellyintexas picture).

Basically just twiddling my thumbs waiting for the inevitable.

[Wittycjt in reply to Jmiller623]

🤞gotcha- asymptomatic sort of🤔

[Mifford in reply to Jmiller623]

Sounds very similar. I have tested weak positive for lupus anticoagulant repeatedly over the years as it turns out but never been pregnant and only one svt but no dvt. The lupus team said it didnt indicate APS but then I dont know why they bothered redoing it if it doesnt mean anything. I have a telephone appointment with rheumy next week so will ask then.

I was told I had lupus 8 years ago but now they are not sure anymore so dont know if it points back to that again or not.

The tyrptase test is odd .. I dont really understand mcas yet and trying not to get too bogged down with it but my understanding is tryptase will be raised in mastocytosis but NOT in mcas. If fexofenadine is helping I'd be inclined to look into that again and ask your gp for a referral to someone who understands it. I had to come off anti histamines for a week before my appointment and I was sooo itchy. The consultant told me it's a big indicator- anti histamines only work on histamine so if they are helping then theres definitely something histamine related going on was how he put it to me. Logical really I guess.

[Jmiller623 in reply to Mifford]

I was tested for lupus anticoagulant because I had livedo from head to toe. ANA has only been positive but always negative dsDNA. Had signs of SLE starting 10 years ago. Had “mono” symptoms and never felt the same. A few years later got pericarditis. Surprised no one picked up on it then. I was to enveloped in my studies too much to care.

I did see immunologist. He was of no help. Hematologist suspected MCAS. KayHimm has recommended someone in Virginia but I haven’t the energy to get down there. Montelukast turned me into a red beet. I just think if the fexofenadine works, I’ll just stick with it. Not sure what MCAS diagnosis would change. I’m really tired of convincing docs so I just keep on keeping on until something tanks my functionality.

[Mifford in reply to Jmiller623]

Theres a lot of similarities. I am ANA positive with both speckled and diffuse pattern but test negative for both lupus and RA. My anti dsdna is actually below the "normal" range but nobody knows if that means anything as my doctors have never seen that before. I was diagnosed mainly on symptoms but the lupus specialists in London now say they cant rule it out being there because of my ANA but it's not currently active. They have added in fibromyalgia with hyper mobility and chronic fatigue. I also have hashimoto's thyroid and a really rare level of photosensitivity with solar urticaria and reactions to all visible light. At the moment this is causing reactions that photodermatology say myst be lupus as it's too reactive for solar urticaria and the lupus team are saying myst be solar urticaria as they are too strong for lupus.

Somewhere in amongst that mcas was raised as a possibility. Based on allergy last week I'm not sure it will ever be fully diagnosed but they have switched my cetrizine to fexofenadine (getting bad headaches so this may get switched back) and started me on sodium cromoglicate which I'm started very slowly on friday and fingers crossed so far so good so will increase after a week. I'm a bit like you though - I've gone through stages of just giving up on fighting doctors to listen so it's been going on too long but at this stage as long as the meds work they can call it whatever they like! I do now have a referral to an mcas expert so fingers crossed that doesnt get cancelled with the current pandemic and I get some answers there. It is the first thing I've ever looked at that has fitted my symptoms so well so I'm hopeful.

I'm not sure at all how the lupus anticoagulant fits in with any of that or whether anyone understands it at all. I'm in the UK so it is dealt with via the NHS and at the moment I have a rheumatologist who isnt sure what to do with me. I suspect the answer will be it doesnt fit APS and we dont quite know what it means so we will continue to just ignore it until something happens and tell you its yet another test where some people just test positive but it doesn't mean anything. I have a growing number of those lol

[Wittycjt in reply to Jmiller623]

Cant blame you, this disease is exhausting- you start on one thing and other things can keep unfolding