Any Advice Please - Raynaud's, Vasculitis and Dr.... - LUPUS UK

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Any Advice Please - Raynaud's, Vasculitis and Dr. Appt.

Pumpkin2009 profile image

I have been having increasing problems with freezing fingers for no reason and then being cold all over and debilitating exhaustion. Then the other day, I was putting a frozen package in the freezer and my one finger turned purple that lasted for hours in spite putting in warm water and massaging. It felt stingy. The picture's color does not show how dark it got. I am wondering if it is Raynaud's or vasculitis or whatever. I have a rheumy appt. this week and need some advice. Will this be something if I tell him, it will be a so what and here are your prescriptions for lupus? I am dreading the appt. as he has students take all information ( they are not going in to rheumatology) and then he comes in and gives the prescriptions for plaquenil, lefloumide and prednisone.

Any advise would be so appreciated.

Healing hugs.

35 Replies

Hi,

The photo is dated 27/4/2017! 🧐

Just saying.

Xx

Pumpkin2009 profile image
Pumpkin2009 in reply to Suvi8901

My camera date stamp is incorrect and I don't know how to fix it. This photo was taken on Friday, May 6, 2022.

Hi, I was prescribed nifedimine for Raynauds as it opens the blood vessels and helps circulation.

Unfortunately I had to give it up as I was menopausal and it played havoc with the hot flushes and night sweats. If you are not at that stage or have gone through it, then it may well work for you.

I know it may seem over the top but wearing gloves when you are delving into the freezer helps and at wintertime I have gloves and then mittens on the top.

Thank you for the advice. I had a hysterectomy some 20 years ago, so menopause is not a concern. I have put gloves on at time in the house even and will definitely be more careful in the freezer. Again, thanks so much.

Healing hugs.

I have struggled with peripheries being freezing with Raynaud's, as you say at times for no reason, well seemingly daily for twenty yrs now haha. It may well be a bit of raynaud's. I have my hands tucked into two hot water bottles at night so they're not on me making me colder. Xx gloves throughout the day and night, and warm them slowly as to not cause damage when they reperfuse. X

Good luck at your rheumi appointment.

Remember cold hands mean 'warm heart' ❤️❤️❤️❤️❤️❤️

Lottie

Thank you so much, Lottie for your kind words. I am sorry you are suffering also. Some of this stuff is just so strage.

Healing hugs.

Hi.sorry I can't help with fingers but just wanted to point out that you have the right to refuse medical students.you should be told and asked if you are happy .if not say so and say you want to be seen by your consultant x

Thank you so much for your support. I have a hard time standing up for myself in general and in doctor's offices, I tend to just give in. Your advice in much appreciated. Have a nice day.

Healing hugs.

they are no different to you or me ...they eat,sleep and fart exactly the same.they are not on pedestals and only you can fight your corner and get the treatment and respect you deserve.i have a good relationship with all my consultants...they know I will challenge them and ask for explanations and they also know they can't fob me off come on my lovely get your confidence out of your boots xx🤗 xx

Well said!! 👍🌈😽😽Xx

Hi KK How's it going ? I always feel sad when people can't deal with drs and they are losing out on vital help as a result xx

Sorry for late reply Spaniel 🤗I've been feeling pants. I'm reducing pred again n unfortunately I timed it to coincide with my blood test... oops!! I was feeling pants two days ago when the UV was 5 here..then yesterday when I went for blood test it was chucking it down. I was in wheelchair with soggy hubby pushing me along..it was freezing n I got cold to the bone!! Today I'm recovering though..resting up.Hope you're feeling bit better today I've noticed that you've been reducing too n been having some chest pains..I do hope they're easing off for you.

Gentle 🤗💜🌈😽😽xx

Sorry to hear you are struggling in the same way KK. My gp last night increased my steroids to stabilise then going to try smaller drops of 0.5 mgs .right now though I feel at my tipping point. I've just had bloods done and been to respiratory physio but she couldn't do much with me today as my resps were 26.had no rain but I've felt cold too.rest up and have a nap or 2 xxx 🤗 xxx

I'm with ya babe..holding hands!! Beds the warmest place right now!! 🛏️😹This is me reducing from 4.5 to 4mgs..I'm doing it in 0.5mg stages too 🤝U take good care of yourself lady..u know the drill 💜🌈😽😽xx

I've even considered 0.25 mgs if I could cut a 1 mg tab in 1/4s. 🤔 Ready for bed myself but tea to make yet. just come in with the dogs and wedding hearts to make but at least I can do that with my feet up xxxx

Apparently they do pill cutters on Amazon. Another member told me about it few weeks ago. Yes I'm off for munch n then I'll turn in. Enjoy your supper n making those wedding hearts 💜Put your feet up 💜🌈😽😽xx

MorningI agree with advice from all fellow group members and would like to add you don’t have to see students. When you go to the desk to check in just ask the receptionist “can I request please that today I see mr ? Or a registrar in rheumatology . We wait a long time for these appointments, they use up a lot of our mental and physical energy it’s not fair for your time to be wasted . The stress alone of not seeing the right person won’t be helping your health. Good luck. And yes definitely mention the cold hands and don’t be let him fib you off. Sending hugs 🤗

M x

Thank you so much for your advice and support. It means a lot. I tend to have trouble with authority figures and see doctors as that and then don't stand up for myself. Then afterwards am frustrated with myself. Hope you have a nice day.

Healing hugs.

Thank you so much for your reply and support. I am going to write a post of my Dr. appt. soon.

Healing hugs,

It was under Rheimatolgy years ago. The old fashion way was for them to place yours hands in ice water and check circulation then putting them in hot water to see how long to get circulation up to normal.

But now a days I think it’s blood test.

But it will be circulation problems.

Thank you for replying. That makes since. Hope you have a great day.

Healing hugs.

Good luck. Most of them r reasonable and just listen to what u say. Less stressful then a face to face ones.

Hi Pumpkin 🤗My fingers go white n blue but I haven't had a purple one...yet!! Gloves are a must for me..I'm nearly always wearing some kind of glove or wrist warmers which are great too.Definitely tell your rheumy especially if it's a new symptom..either way it's bothering u..that's why the doctors are there.

I would also mention about keeping your core warm..I wear several layers of clothes so I can adjust my wonky inner heating system!!

My rheumy has noted in his letter "Discolouration in hands n feet"..I intend on asking him next time what he means. On his letter before he put "Sicca symptoms..positive Ro n La" I asked about it here n was informed that's a Sjogrens diagnosis so next telephone appt I just asked him if I have Sjogrens n he said probably yes!! 😹

If you would like me to give a review on the gloves I use I'll be happy to 💜🌈😽😽xx

Thank you so much for your support. I am going to post on my rheumy appt. today soon.

Healing hugs.

Hi Pumpkin 🌿🌸🦋

My dad’s fingers turn such a dark purple they’re almost black.

He has Raynauds Phenomenon and high blood pressure and serious heart failure.

He also has a very high salt diet. Due to this salt addiction he has worsened his flares with purple digits.

He is 93 and is doing/eating whatever he wants and likes.

I hate to see him suffer so much.

A cardiologist can test for heart/blood vessel problems.

I have Raynauds Phenomenon

Feet/hands and anywhere it desires to go.

I curb my salt and take blood pressure meds to help control HBP.

I hope you will be able to get help soon.

When circulation to the digits is stopped to long frostbite/ulcers develop and amputation may be required.

Best wishes sweetie.

Love and prayers.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

Pumpkin2009 profile image
Pumpkin2009 in reply to honeybug

So sorry to hear about your father. That is hard for you as well as him. You mentioned that Raynaud's goes anywhere it wants to. My feet and sometimes my legs below my knees get quite cold, but many times when my fingers are so cold, my face and nose are also very cold. Is there a connection possibly? Thank you so much for you concern and support. It means a lot to me. Wishing you a nce day.

Healing hugs.

Yeah there all counted as peripheries really. Ear lobes,nose, fingers, toes, elbows and knees. It's a bit like that song, 'head, shoulders, knees and toes' 😆

But honeybug is right, in that it can be bad if youre not careful and keep yourself warm or with me, if my chilblain lupus flares then the raynaud's takes on a mind of it's own even more than usual.

I happily have ten digits on hands and feet, but I suffered bad frostbite back in the day, and they were meant to amputate and just save my thumbs. But can't complain I have them all bc I'm just too stubborn. X

Thankfully most get it mild, but it's still unpleasant, so cozy cozy and more so. X ☺️☺️

My hands these last few weeks
honeybug profile image
honeybug in reply to LottieLou96

So sorry for you sweetie. I pray you’ll get relief soon. Love and prayers

EJ 🤝❤️‍🩹🙏🕊🌿🌸🦋

LottieLou96 profile image
LottieLou96 in reply to honeybug

I'm feeling blessed in the sense they could be much worse, and God gives me my hands a break when I'm at work in emergency department doing his will x

honeybug profile image
honeybug in reply to LottieLou96

I’m so elated to hear this Lottie. I too do His will. Nice to meet you.

Love and prayers

EJ 🙏🕊🤝❤️‍🩹

honeybug profile image
honeybug in reply to Pumpkin2009

Apologies hun 🌿🌸🦋

I don’t get notifications when I have replies waiting for me.

In my case it took decades before my RP going anywhere it likes.

One season my body did an exact 50/50 split from head to bottom with RP on the left and IEM/inherited erythromelalgia on the right sides.

As time passed I started getting ears nose eyelids then random spots on torso limbs.

Because we are uniquely individuals any condition/disease has the ability to affect us differently than its normal progression.

It’s strange that my dad only has his hands affected while mines is all over. We both have the cold to the bone commonality. Just a chill sets it off.

Mine is now cyclical as whichever one is first is followed by the other: RP/EM or EM/RP. I dress in layers and drive myself crazy with the on/off matching cycling of clothing.

Can’t take any heat/or cold without reacting; rarely any comfortable temp.

I protect my hands by using gloves to handle cold/frozen things and used to sleep with them and arm warmers on too.

I do believe there IS a connection to your face reaction.

Best to talk to your GP for circulation / heart check. There is meds that can help with your serious RP.

Best wishes for the aid you seek. Let me know how you’re doing okay??

Love and prayers sweetie.

EJ 🥰♥️🤗🙏🕊🌿🌸🦋🤝❤️‍🩹

With my sore, red, swollen fingers, Betamethasone cream (corticosteroid) seems to work.

I put on liberally at night wear gloves and wake up and they’re less red and angry!

Note topical steroids vary in potency and must be prescribed.

Pumpkin2009 profile image
Pumpkin2009 in reply to Suvi8901

Thank you so much for your reply. Wishing well.

Healing hugs.

Pumpkin-

That is some discoloration you have in your finger tip. I don’t have this symptom but would he surprised if your rheumatologist dismisses it.

That scenario of the residents talking to you first and doing their exam can be annoying. But I try to see that this is the only way they learn. You will be a super interesting patient! Even though you don’t see your rheumatologist until later, he is probably gathering the information from the young doctors and challenging them.

Check back in and let us know how it goes. Ask the residents what their thoughts are on your finger. You will keep them on their toes.

Xx K

Pumpkin2009 profile image
Pumpkin2009 in reply to KayHimm

I am goig to post on my dr. appt. soon. Thank you so much for your reply.

Healing hugs.

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