Letter to GP from Connective Tissue Clinic

[Lupiknits]

I spoke on the phone to my GP about whether he had a report following my 30 March appt. I'll see him to get a copy of the letter but this is what he's told me as "good news".

ANA down "a little". Diagnosis is query mild lupus/scleroderma, with definite secondary Raynaud's, plus OA lower spine, hips, knees and hands. Three month follow ups, and GP to ask for urgent referral if I lose more weight. Carry on with hydroxy, co-codamol and meloxicam ( the last of which I'm not touching because it rips my stomach) SP50 ( that zonker of a selfie must have been impressive). No major organ involvement.

Could be worse. Not exactly good news but not the dreaded fibromyalga/ fantasist/hysterical woman scenario we all dread. In my opion the three month follow ups are their fantasy, but I think I can manage if nothing gets worse. Hey, might get better.

[misty14]

Hi lupie its

Good letter from your consultant and as you say no Fibro label but a definite query about lupus and scleroderma!. Sounds to me more like what I am which is UCTD which encompasses all those diagnoses. It's good they want to keep an eye on you specially if you still lose weight. These illnesses do change so you must report any new symptoms. Sorry you have OA so much. It's a long tough road to an answer but looks like your practically there!. How do you feel about it?. X

[EOLHPC]

HURRAH 👍👍👍👍👏👏👏👏🌟🌟🌟🌟🌟

OK: not exactly good news, but this is more convincing...you're well on your way into the diagnosis & treatment process!

Had been wondering how this was going 🤔

YAY LK: you're on the right wave 🌊🏄‍♀️

🍀😘🍀😘🍀😘 coco

[Lupiknits in reply to EOLHPC]

To be fair to rheumy's have had a "something auto immune going on" vague answers before now (or "inflammatory arthritis") Now it's pretty much to carry on as they told me in Oct '15! The end of March this year was my first follow up since then, which is why I'm cynical about more follow ups. The hydroxy must be making a difference.

How do I feel about it? At the moment, as long it doesn't get any worse full time, as opposed to the flare times, and my major organs are OK, I can manage, with my friends here x

The Raynaud's is getting worse ☹️ Very tempted to ask for a wee try of nifedipine as long as I have someone around to make sure I don't pass out. Not tempted yet, but could be.

[EOLHPC in reply to Lupiknits]

Yes... think I understand

For what it's worth: 3 monthly appts sounds right to me, and having this in writing indicates the consultant realises you need close monitoring. Which, re everything you're telling us, sounds right to me. in my first 2-3 years with rheumatology lupus clinic, while my diagnosis was "Provisional: SLE", I was only on daily hydroxy being seen every 3 months...with advice from this forum: if an appt date hadn't been sent me within, say, 3-4 weeks of my last appt, I did chase things up...usually successfully 😏 but it was no picnic...you know all about how hard this is

within 2 years of this 'appts every 3 months' thing , I was advised to try 10mg pred tapers and then to try daily myco Cellcept (by then my SLE diagnosis was no longer Provisional). I forget how long you've been with this clinic...apologies (brain fog) but I think you're on hydroxy...and haven't been offered these sort of meds yet...

You probably know my feelings re raynauds medication: you're so right to be extremely cautious...

🍀😘🐾🐾🐾🐾🐾....

[Hidden]

Hi LK. Well I get your mixed emotions on this because nothing about what you are experiencing feels mild I'm sure. But I think it's positive that the rheum is looking out for Scleroderma - which can develop very slowly apparently. And it may be that they need to add in an immunesuppresant over time.

But I did think of you when this gang of UK Sjögren's sufferers were chatting about Hydroxy on a closed FB group that I've now left. They said that their liver function has to be checked every 3 months and rheumies have to see patients on Hydroxy every six months in order to monitor them. So I do hope they live up to the 3 monthly appointments from now on.

Re secondary Raynauds, I'm in the opposite camp to you in that my BP is usually very high and I'm very overweight so I guess this means I'm safer to risk medicating more aggressively. However I am still not actually not even sure my problems are Raynauds related - mine is just getting slowly worse in hands.

Buy I think the main cause of pain in my fingertips is Pompholyx eczema rather than chilblains - so Sildenafil/ viagra could be a red herring for me. I did find Nifedipine occasionally caused my BP to plummet but the Losartan has barely brought it down and adding the Sildenafil in has just brought it to a respectable 119/85 - so I think Sildenafil has barely affected my BP at all. Just in case this experience helps you think about possible Raynauds meds.

It's very good that you don't have any organ involvement yet at least. And it's always a great relief not to be told it's all just "functional" or "benign" of course.🙄😖 xx

[Lupiknits]

Thanks twitchy. This morning I'm not at all unhappy about the description of my diagnosis. Happy to be "mild" ( and it is, in comparison to so many others). The treatment seems to continue. I have regular liver function tests for another rare med I take for the bipolar, which can affect the liver, and they have all been fine.

Random thought: do letters ever say "galloping lupus" in the way TB used to be described? 😂

[Puska]

My rheumatologist appt was very similar. I do have diagnosed Hughes Syndrome and she also predicts SLE but last week she said I'm showing many patterns without a distinct one predominant. She too said scleroderma. My Raynauds is rampant as Australia's winter starts. That's what she is very concerned about.

[Wendy39]

Hello Lupiknits.

These appointments take so long for us to analyse in our heads, don't they. They are so important to us.

This sounds like a big step in the right direction. I hope that is the case.

I am always interested to read everyone's replies. My Rheumy appts have been about 11 months apart, the whole way through. And I never had bloods monitored on Hydroxychloroquine. So still learning about all this, every day.

As for the mild tag. It feels like an injustice doesn't it. Dr K in London told me my SLE was mild and I had been told this before. I immediately said, but it still effects me every single day. He says he understood that but for him as a doctor it was mild. I have no organ involvement. Although the brain issues aren't resolved and the brain is an organ isn't it? Anyway, like you said, we have to think ourselves very lucky as others suffer more.

I hope your 3 month follow up dies happen and things move forward quickly.

Do you think you need more medication?

Wendy

[Lupiknits]

Thanks for the doctor's use of "mild" Wendy. It's true that they don't necessarily mean it as a put down to whatever we are experiencing. In their world, I think mild means (as in my case) my lungs, heart, kidneys etc are fine.

This was my first follow up! Started hydroxy in Oct 2015 and they haven't seen me since. No meds changes in this letter or at this appt, just the reference to using SP50 which I have been doing myself.