Raynauds persistent blue finger tip

[trunchalobesity]

Can you let me know what you are prescribed as vascular dilators?

My finger tip has been blue for several days and I can’t get it to pink up with heat, massage or manipulation.

Thank you

[hunkyd0ry]

After trying several other meds that didn't really help me, I am happily settled with Sildenafil now. I can vary the dose between 0-6 tablets (25mg) per day depending on severity of symptoms and would notice a definite difference within 4 days approx. No issues with side effects either.

[trunchalobesity in reply to hunkyd0ry]

Thank you I saw my GP who understood my concerns as she had difficulty warming up my finger enough to get an o2 reading and pulse. I managed at home but it was low every time.

She consulted the rheumatologist and they are sending out sildenafil and arranging for me to have an Illiprost infusion.

Thank you for your reply x

[DJK99]

Hey there - that sounds rather different to the usual raynauds as if you heat up the rest of the area it should make the blood start to move round. . I'd call your GP pronto and have a chat about it if I were you.. or your rheumy. Could you add a photo on here to see if it resonates? As for the meds, for me, Nifedipine MR works a treat. Fluoxetine just gave me nightmares and Lacidipine did nothing. Best to have a chat with your rheumy to decide which one... or GP. Best of luck, D

[trunchalobesity in reply to DJK99]

Thank you I saw my GP who understood my concerns as she had difficulty warming up my finger enough to get an o2 reading and pulse. I managed at home but it was low every time.

She consulted the rheumatologist and they are sending out sidnefal and arranging for me to have an Illiprost infusion.

Thank you for your reply x

[DJK99 in reply to trunchalobesity]

Good to hear! Aha the Viagra route! Yes, I hear it has really helped with difficult symptoms - Barnclown really had serious stuff going on with her feet and hands too I think and that stuff has really helped. I also hear the illoprost is great for pain etc but have just read about it now and can see it is used for those with highly constricted blood flow. Hope it all works well and great reaction by your teams! x

[trunchalobesity in reply to DJK99]

Thank you very much x

[Barnclown in reply to trunchalobesity]

Hello trunchal...am relieved your rheumy I’d moving promptly to help you. My rheumy recently moved promptly too. I’ve been in sildenafil for a month & a half now, liaising with our Connective Tissue Disease Specialist Nurse re my response, who liaises with my rheumy re incrementally increasing the dose - am now on 100mg daily (25mg first thing, 50mg early afternoon, 25mg at bed time) and I suspect I’ll need to double the bedtime dose. My response is consistently positive with no significant side effects so far 🤞

because I’d proven unable to safely tolerate nifedipine years ago (which indicates I’d not cope with iloprost too), my rheumy had had me on low dose losartan for years, which did help a lot with my childhood onset raynauds, but couldn’t stop it continuing to progress into severe ischemia causing reperfusion injury (with erythromelalgia getting more & more severe alongside my large & small fibre neuropathies).

In case it’s useful, I’ll attach the shared-care guidelines my CTD Nurse sent me GP practice re this sildenafil treatment.

Hope you’ll let us know how you get on

❤️🍀❤️🍀 Coco

[trunchalobesity in reply to Barnclown]

This is really useful. Thank you very much x

[Barnclown in reply to trunchalobesity]

GREAT! Not sure if all NHS hospitals follow this sort of protocol...it’d be interesting to know if they do! Take care & good luck XO

[Barnclown in reply to DJK99]

👋👋👋👋 just want to say THANKS, cause had been struggling with my basic cuff BP gadget (my arm is so skinny, the cuff barely works on it), so the other day when you mentioned the Qardio gadget on LUK forum, I looked into it...& of course the benefits were obvious, so simply had to order it.. set it up this morning & took my first measurements...now just gotta figure out how to average 3 BP readings..this gadget is going to make my life MUCH easier ❤️🍀

[DJK99 in reply to Barnclown]

Awww Coco.. i know what you mean - I’m a skinny bunny too... it certainly holds on eh! It’s great for recognising my arythmia s too although annoying it just misses them quite a bit. I do the 3 tests at a time too, during my mindfulness meditation moment each day. You can see the evened out monthly average, high and low which put my mind at rest after having quite a few 170, 150, 145 etc... and averaged out in an ok range . Hope it continues to give you what. you and your clinicians need. Thanks for your thanks... you know I love to help if I can! Xx

[Barnclown in reply to DJK99]

🤩❣️💞💞💞💞

[Bkart in reply to DJK99]

Anibeth

New to all of this (which I keep saying boringly on my posts). Sorry to but in on your post but I’m desperately latching onto to anything which might help me. Barnclown mentioned tests etc which I’m not sure what they are for (presuming Raynauds?)

and a Qardio gadget which you mentioned has been useful recognising your arrhythmia as well.

Could you possibly tell me what arrhythmia you have. I have paroxysmal atrial fibrillation, I have had two ablations (the last one in 2014) and then continued on Flecanide (anti arrhythmia drug). However following a hospital admission for a

bad angina attack 6 months ago I was taken

off Flecanide without an explanation (didn’t find out till I got home after discharge). I’m now getting longer attacks of palpitations and the fluttering sensations so I think the arrhythmia is possibly back, apparently it never stops but the ablations are supposed stop it getting through to your heart.

I was supposed to have had a follow up in Cardio but this hasn’t happened yet. I was just wondering if this ‘gadget’ could help me so that I could say this seems to be happening and speed up my follow up. Any body seeing my posts must think ‘heavens is there nothing this girl hasn’t got!’

Greatly appreciate any info and help. Thanks.

[DJK99 in reply to Bkart]

Hi Bkart. The Quardio arm is really fir blood pressure but ssys it also monitors anytime heart is outbof rythm - i got this for both as have history as you describe. The arm quardio is great for blood pressure but only says “irregular hearbeat “ when it happens, not what type. If that’s good enough fir you then great. Otherwise there is another Quardio Core which you wear round your chest all time if you like, and I think that monitors type of arrhythmia. Read up on it - it’s expensive. Might need both Quardioarm and Quardiocore and best to get from their site but can purchase on other sites ie Amazon. Good luck and hope you stay as well as possible D

[Bkart in reply to DJK99]

Thank you so much for this info, got tears in my eyes. Will look it up but think either one would be suitable. At the hospital they mostly only put you on a 24 hour holtermonitor, because my arrhythmia comes and goes at random and sometimes several days between episodes it doesn’t usually catch it. I used to have a brilliant Cardiologist who once said it can be like looking for a needle in a haystack but it still needs to be found. The cardio core sounds just what I need as it probably must work like a holtermonitor and would pick up straight away, and not have to return it the next day to be told everything’s fine when I know it isn’t. Never knew you could actually buy these things, so grateful for this info.You take care as well.

[DJK99 in reply to Bkart]

Tell me about it! I had a 48hr one last year and it only got my supraventricular and ectopic beats... which is good in a way, but, yep, almost literally in the next hour of taking it off, my heart did it's paroxysmal atrial fib dance. Thing is, I had ablation, er, 4 or 5 years ago, and after 6mths it finally did seem to work... but I was in an extremely stressful, intense Social Work job and my little ticker just couldn't deal with it until I really had to reduce my work load. And ditch a difficult relationship too.

I'm sure you know but the most important things with this is to limit stress to the minimum was much as you can - and also have the healthiest diet you can, keep as active as you can - daily, and drink lots of purified water (I have a Nikken Waterfall which is fantastic). I glug water all day as have sjogrens so I'm constantly thirsty, as well as downgraded SLE to lupus like syndrome - and the severe raynauds is part of that. If you want to read my story on the latter, do look on SRUK website and you'll see my hand pic with a big fat aquamarine ring and then read Deb's story (that's moi).

Do you have heart stuff in the family? I also have moderate aortic regurgitation and my brother who is 61 has an pig aortic valve that he got about 15yrs ago. Still going strong however he's very unwell now with Parkinson's and Lewy bodies. He's had ablation which worked well, and has been cardioversioned many times. His AF isn't very strong and sometimes he doesn't even know it's happening.. mine, however, is like a bomb going on and off and you can't miss it almost jumping out of my chest ;).

I know it's all very worrying... Are you a member of the British Heart Foundation? They have a magazine that comes out regularly and it's quite helpful along with lots of positive stories by patients.

Raynaud's-wise it's generally very easy to see if a person has it.I was diagnosed by various clinicians in the 10yrs before I saw a rheumy but didn't want to take meds. Mine was super obvious of course... and this is the pic attached in case you don't get to go on SRUK - but it's a great site. I put up with it being that bad(although that was the worst it had got to, even with gloves!) all my life well, since 13-54. I wish I'd started taking the nifedipine MR sooner.. I didn't need to put myself through all that difficulty.. but I was brought up not to bother with GP's and medication.. The MR means modified Release and I discovered I needed that as the non MR version of Nifedipine just made my dodgy ticker go all over the place... I felt like I was on speed! So swiftly changed by rheumatologist to the MR version... which I don't have any problems with, quite the reverse! It doesn't work for everyone - but the fluoxetine was pointless, plus nightmares.. no thanks... and lacidpine did nothing, in fact I got chilblains. So hope all that helps... Barnclown has had great results from Sidinafil (viagra!) and it might be you do to.. but she has quite bad complications from her very complex health needs, and the viagra was a breakthrough for her.. hurrah!

If I can help with anything else, do ask! Nothing like hearing it from people who have gone through what you are. All the best to you. x

My raynauds's pre nifedipine MR

[trunchalobesity in reply to DJK99]

Thank you for your lovely reply.I’m now on 4 times my start dose of Sildenafil and things are improving but the pulse rate in the finger is still poor and the O2 level isn’t where it should be but I am improving.

I’ll keep you all updated x

[DJK99 in reply to trunchalobesity]

Great to hear you are on the meds, and there is some improvement. I do hope it improves... look forward to hearing your updates! x

[DJK99 in reply to Bkart]

Hi Bkart - just got this email from Quardio..... might be time to purchase?! BTW - I must stress, you mentioned your arrhythmia gets missed on occasion - this quardioarm does regularly miss my arythmias because it only tests for it when doing your blood pressure... and that is only for a few seconds ie when it has reached full "squash" of the arm and is taking the measurement. If you heart goes out of rhythm just before or after that, it won't log it as out of rythm. The Quardiocore can be worn all the time and it will log every arrhythmia you have during the time you are wearing it. Anyway - hope you get the results you are hoping for on the one you go for in the end - maybe both? Expensive I know. All the best. D x. store-uk.getqardio.com/prod...

[Barnclown]

First bit

Introduction to protocol copy

[Barnclown in reply to Barnclown]

The rest of the shared care guidelines

Rest of protocol copy

[Montaza]

I use Nifedipine and GTN patches.

[trunchalobesity in reply to Montaza]

ThanksWhat are GTN patches? I’ve started sildnefal but have to go in for an iloprost infusion x

[Montaza in reply to trunchalobesity]

GTN patches are sold as MINITRAN 5 or MINITRAN 10 (in Australia). They are clear oval shaped patches that contain glyceryl trinitrate which are applied to the skin. I use them on my hands. I stick a patch on the top of my hand. They are used by people who have angina and are usually applied around the chest area I believe. They are a vasodilator basically. I wear them during the day and peel them off at night. Sometimes I wear one one on each hand or just on one depending on how bad my fingers are.

[trunchalobesity in reply to Montaza]

Thank you I’ve never heard of them, I’m not sure they are available here x

[Montaza in reply to trunchalobesity]

Ask your doctor. I am sure there would be something similar but maybe referred to by another name. They are originally designed for angina patients.X

[trunchalobesity in reply to Montaza]

I wool do, they have started me on Sidenafil and I’m to have an Illiprost infusion.Thank you

[Barnclown in reply to trunchalobesity]

Hope you’ll keep us posted! ❤️🍀

[Montaza]

I use Nifedipine and GTN patches