Today's Rheumy Appt: Wish You'd Been There! 👍⭐️🌈

[Lupiknits]

I had a 9am rheumy appt today in the clinic overseen by one of the professors, and I have another next week in a clinic overseen by another professor. I haven't, and most definitely wouldn't , question why I have 2 appointments. Gold dust comes to mind.

At today's I was called in by a very pleasant junior from Australia. Given my bad eyesight at the moment, I thought she was the one I met some time ago, and that she'd had a personality transplant. No, it was a different blonde beauty without withering put downs or barked orders. She asked if I'd be happy to have a Spanish junior sit in, and I thought it was fine.

We got into the consulting room in a flurry of excited questions and chatting back and forth. They found everything about my health so interesting I had to touch the table to make sure I wasn't imagining it.

When I mentioned the extra eye and mouth dryness, which has gone beyond what I'd consider only the result of med side effects, and I now regularly need drops and mouth moisturisers, I got a referral to oral medicine and a ct scan of my glands.

I was asked how I coped with the Raynaud's and I gave them my usual practical measures. The survival blanket caught their attention. A good chance to open eyes to how we self manage? They noticed how very purple the palm facing sides of my fingers are. Sildenafil was a no-go for me because of my low BP. I'm going to give Trental (Pentoxifyline) 400mg modified release 2 x day a go. It's a peripheral vasodilator, but there's a slight chance it might be another no go because of my BP.

Now comes the part I think many of you will be interested in : I've been asked to, and am, taking part in, a research study. This study really makes me feel they are doing their best to puzzle out our different varieties of auto immune disorders, and trying to find blood/gene markers which might explain why we all have different intensity of symptoms, why we have flares, what might have been a catalyst for the AI takeover, and ultimately perhaps identify those with the propensity to develop an AI disorder. I think I'm roughly right about that. I'll put a link to a paper previously written by the same lead doctor and Professor at the bottom for those of you better read up on these things.

Today I've given 8 samples of blood. 4 for now and 4 to be tucked away or sent around the world. I've given permission for all the blood tests, scans, MRIs etc to be shared here, in Europe, and at Harvard. The research will be 6 monthly appts. It's called DEFINITION ( DEFining Interferon mediated autoimmune condITIONS)

The young Spanish medic was there to give me a 10 min cognitive test because they are going to tie brain fog into the research.

I think this is all quite good stuff in terms of attempts made to understand us better. This research study seems so much more positive than the one I'm on at the moment (the ten year death rate and causes study) . That one makes me 😂 when I think of statisticians counting how many got run over by a bus. Pl forgive black humour.

eprints.whiterose.ac.uk/106...

So, that's this week's appt. next episode is next week. I would be off for a nice lie down in a dark room, but the dog is tapping his claws insistently so I think a walkie is in order.

[GloomyEeyore]

Sounds like a wonderful appointment! It is fantastic when you get a medic or in your case medics, who are so interested in your case.

My eyes have been a lot drier recently too. Put it down to the weather and the fact the heating is now on. Maybe should mention it to my 🌟 GP though. Might mention it on Tuesday when I see the nurse for my asthma appointment.

Found reading the medication you are being tried on for Raynaud’s interesting. I too have untreated Raynaud’s due to low BP. I was put on nifedipine and taken off it after one tablet. It made my heart race. What I found interesting is that I was told there was no other treatment available!

It is great that you are taking part in a research study! The more that can be found out about AI conditions the better and it needs the cooperation of patients to do this.

Hope your dog enjoyed it’s walk and you did too. Nice day here but a bit cold. Xx

[Lupiknits in reply to GloomyEeyore]

I'm suspicious of this med GE. I'm definitely not taking it unless someone's around in case it lays me out. I'm also not taking it yet because it was not on the list of meds the cataract surgery clinic saw. I have the first surgery 2 Nov, will check then if it's contra indicated for that in some way, and get advice.

[Barnclown]

😍YAAAAAY LK 👍👍👍👍👏👏👏👏🌟🌟🌟🌟🌟

🍀❤️🍀❤️🍀❤️ Coco

[whisperit]

Thanks Lupiknits,

That sounds very positive. The research study sounds really interesting, and the paper does seem to indicate that they are seeing these systemic auto-immune disorders as sharing common initiating/sustaining pathways (INF-1 stimulation in this case). That could surely lead them to some very important insights for us interms of treatment? So you are on the front line - and hopefully that will be a great incentive for your clinicians to keep on top of monitoring and treating you. Looking forward to the next instalment! x

[Lupiknits in reply to whisperit]

Thanks Mike, well I'm happy to take part in something that could prove very useful, and is likely to ensure I get continuing check ups. The participants are those with "some kind of AI but we're not sure how to classify it"': a label that fits so many of us, which makes me extra happy; AND it removes my irrational fear of being kicked to the kerb with fibro. I hope I'm not offending anyone with a diagnosis of fibro and who is doing well, but, to me, it often seems an easy catch-all and some of us have had to fight hard to get past that . I never have, but still have a fear of it.

[Hidden]

It's interesting to see this research under Prof E. Manchester was doing some research over "overlaps". SLE rarely stands alone.

[DRunnerchick]

Sounds like an excellent research opportunity! I hope it benefits you as well as the rest of the AI community in understanding how the mechanisms work so prevention and treatments can be in the not too distant future for all of us!

D🏃🏽‍♀️

[honeybug]

Hi Lupiknits😊🌸🌿🦋

I love your post. I love your sense of humor too.

I’m sooo happy for your good news. I hope and pray that in this new study they will be able to properly diagnose and treat you. 👏👏👏👏👏👏 for sharing your study results with the world. 🤗

Best wishes and abundant blessings sweetie.

Hugs 🤗 love 💗 and kisses 😘.

😊🌸🌿🦋🙏

[puffyface]

Fascinating! Good luck with the trial...anything that helps them to understand what’s going on and how to make us feel better is great! I tried to read paper...but too stupid...so will print it off and try again with head under a cold towel! I’m on a clinical trial just now for belimumbab and rituximab. It feels a bit scary...but my rheumy is definitely keeping an eye. Much better care than before! Let us know about next weeks appointment. 😊

[Lupiknits in reply to puffyface]

I tried to follow it and think I may have a teensy grasp, but I'm going with a bit of brain rest, and thinking it's a good thing. I'd need to study hard and look up a lot to understand it really well. Hoping to ask the researchers as I go along! Others here have researched much more than I have so they understand it better. I'll take their lead!

[Hidden]

Hi LK I just want to cheer madly for you immediately!!! 💃🏻🕺

In car right now on way from brilliant GP consult to first hydrotherapy session (hubby driving via H&Ms as I haven’t got a good swimsuit yet!!) 😊🤗😊

[Melbourne-Girl]

Hi there Lupiknits I can see why you must have thought you were in a nice dream and it’s great that it was a reality. These type of studies should be being done on a more regular basis.

It’s good to see our own LK is going to be involved and I’m pleased that you have some Aussie Drs involved as well. Over the years many Doctors & Nurses have undertaken special medical training in the U.K.

Like others I will be interested in your appointment with Professors next week too.

You are like me having a low BP. Most people think that would be wonderful but it certainly has its disadvantages as well,

Good Luck L.K. Xxx 💜

Melbourne-Girl

🍀🍀🍀🍀🍀