Latest Appointment at Rheumatology

[Lupiknits]

Nothing much to report!

The research study I took part in last year confirmed I have some/early/ wait and see Sjögren’s which is currently helped by eye drops and a night time lubricant. The Dental Hospital scanned me and I’m due back at the end of the year, while my dentist keeps a close eye and I treat myself with saliva helpers.

I have had an ANA pos result plus the SS pos result in my blood tests and an abnormal nail fold capilleroscopy test . Everything is a pick n mix auto immune disorder labelled as CTD

The outcome of the appointment was for me to consider Iloprost infusions for the Raynaud’s and in the meantime try some fluoxetine. I’ve taken fluoxetine in the past for depression, with no adverse effects. At the time I only had what I considered normal for me cold hands and feet, and I noticed no difference, but I wasn’t really looking for that! The Iloprost I’m not sure about, and he felt I might not tolerate it, but if I wanted to try .... I’m waiting for the extra cold to kick in which might help me overcome my dislike of hospitals and ask for Iloprost.

I have an appointment for an anorectal physiology test in early October to see what might help with incontinence. I suspect biofeedback would help a great deal, with that and with the bladder incontinence too.

So, wait and see if the recent bloods are interesting, otherwise carry on as usual. Hydroxy does help.

Best thing is a big ✔️ to continue with BuTrans and top up co-codamol at times of pain flares. I’m not a junkie, and get no buzz from them, but need them, please! With the recent move to crack down on pain meds I’m hoping to get a green light from GPs. I understand there’s a possible over prescribing of anti depressants too. I suppose fluoxetine for Raynaud’s doesn’t count, and my necessary meds for bipolar disorder come from my psychiatrist and are dispensed by the hospital because one is a fancy one.

All errors are because it’s early, my brain hasn’t woken up and my dog cannot possibly be expected to get his bed comfortable without assistance.

[PMRpro]

"a pick n mix auto immune disorder labelled as CTD" - or Lupiknits syndrome. Definitely a rare disease ...

[Lupiknits in reply to PMRpro]

Got to call it something! I’m yarn positive anyway 😉

[EOLHPC in reply to Lupiknits]

😆🤩YAAAAY LK 👏👏👏👏👏💐💐💐💐💐💐 & THANKS: every detail helps me with my stuff too...re illoprost, for what it’s worth: i have simultaneous raynauds & erythromelalgia...and i sorta recall you do too? Well, 10 years ago, my Erythromelalgia flared even worse in response to nifedipine (basically oral iloprost) & has stayed more intense ever after, my medics avoid iloprost & have me on low dose losartan with relatively pos effects (rheumatology & i think my lupus + PID meds are helping too (hydroxy, pred, myco, amitrip, IVIG, coamoxi)

❤️🍀❤️🍀❤️🍀 Coco

[Lupiknits in reply to EOLHPC]

Thanks Coco: interesting that you had that response to nifedipine. For me, if anyone remembers, it turned my nose and shins bright red as well as making me feel I needed to crawl on the floor to counteract the blood pressure drop. Yes, my nose is permacold, but I can cope with that: looking like I hit the booze hard is not the impression I want to make!

Still thinking of Iloprost if this winter hits hard. Have to see. Yes, it seems like I may have erythro but I haven’t thought of mentioning it.

[GlasgowHen in reply to Lupiknits]

Hi lupiknits, I had a similar response to nifedipine but I’m ok with iloprost. I have it at 4 weekly intervals for 3 days. This is more frequently than most but I put up with it as it makes a huge difference to me.

I have a very similar pick n mix ctd!! I like the analogy a lot, sums it up perfectly

[Lupiknits in reply to GlasgowHen]

Thank you! It’s helpful to know that it works well for you x

[GlasgowHen in reply to Lupiknits]

All the oral vasodilators caused a similar reaction with swollen, red feet, calves and hands. Sildenafil was by far the worst. I started on 12.5mg and needed to work up to 50mg. I couldn’t get past 12.5mg as my blood pressure dropped and I got nose bleeds.

I have very low blood pressure but I seem to manage with iloprost. In the last 5 years it has only ever had to be stopped about 3 times because of low blood pressure. I don’t get the fat, hot feet and fingers either. If you are desperate and in pain it might be worth a thought.

[Lupiknits in reply to GlasgowHen]

Even more helpful! We have similar experiences with blood pressure and med reactions. This forum is ⭐️. I’ve always had low blood pressure, and am nervous to try anything that might make it worse. Living on my own with a most unhelpful selfish dog (cue tail wagging) probably makes me more anxious than needs be

[GlasgowHen in reply to Lupiknits]

My experience with iloprost is that within 10-15 mins of it being stopped all the side effects disappear. I drive myself home, cook dinner for the kids and walk the dogs afterwards. I just get very tired for a day or 2 afterwards. I find if I try and drink plenty through the infusion I fare a bit better. I lie down during it and only get up to use the loo. I don’t eat at all through it due to nausea and my stomach issues in general.

The benefits for me out weigh the 3 days of feeling rubbish. It heals any emerging ulcers quite quickly( I get them frequently but because of the frequency of the infusions they don’t go too deep) and means I am not in so much pain. It doesn’t cure the Raynauds but the recovery is quicker

[EOLHPC in reply to Lupiknits]

Thanks, yes: am v suspicious you too are managing simultaneous RP+EM...so i like your caution re iloprost ...i may resort to iloprost eventually...so glad you & rolybear are here...you guys make me feel less alone + a lot braver re this terrible RP/EM combo...+ you keep my funny bone healthy👍❤️🍀

[Hidden]

You might find this helpful.

sruk.co.uk/raynauds/raynaud...

[Lupiknits in reply to Hidden]

Thank you 😊

[Hidden]

Hi LK. Sorry to be a late arrival to the CTD party but here I am to say I think your rheum apt sounds positive and I wish you much luck with the new Raynaud’s meds. The timing at least sounds good in that autumn and winter are in the air.

I’m going through an EM flare with bright red very painful feet - particularly the right foot. And nose and face are beacons too -in fact my nose is 100% red shiny beacon today. I was out in sunshine earlier for about an hour but with my usual 50 spf cream so I’m guessing it must be EM. I’m not vain but it is a very undignified look! Initially it was Nifedipine that kick started the EM reddening in areas where I already had small fibre neuropathy. Then it gave me purpuric scurvy lol - actually a bacterial foliculitus due to the swelling in my legs combined with high IgGs and Methotrexate injections.

I was actually in Paris as an invited guest speaker at a EULAR Congress when my scurvy turned up and couldn’t even get my slip on shoes or leggings on! But my former island GP came to my rescue by phoning me up in my hotel room and telling me his theory, suggesting I stopped the Nifedipine there and then. Next day it had gone right down although I had the scars for ages!

I then was later tried by present rheumy on Viagra as well as existing Losartan and learned the hard way that our noses contain erectile tissue. My nose also bled profusely on it. Never mind boozey nose - I felt and looked as if I’d developed a coke habit!

All this means that I’m now quite accustomed to drug induced EM - but it’s quite a shock to now have EM in non drug induced form?! I just take 75mg Losartan for both hypertension and Raynaud’s. Seems to work okay in that I don’t get digital ulcers but I think my EM is actually worse than my RP.

Dr P’s letter arrived yesterday listing my diagnosis’s as primary Sjögren’s/ Overlap CTD (sicca, lip biopsy positive, ANA positive, Ro/La negative. Hashimoto’s etc. Later in the letter she says that seronegative primary Sjögren’s is thought to make the long term prognosis somewhat better - but in her personal experience seronegative are “more prone to CTD related small fibre disease”.I’ll say!

So my thinking just now is that my GI problems are secondary to my small fibre neuropathy which causes dysmotility throughout. For me it’s constipation that is the enemy - even one day of not taking Constella or Senna or both will make the next few days hellishly toilet bound. But then I’m hellishly toilet bound if I take it daily too!

I think we work a lot of this out for ourselves over time but having doctors who listen and confirm and treat is the thing. Sounds as though yours is doing this so 🤞🏽🤞🏽🤞🏽🤗