Is this raynaud's?

I have been on nefedipine for a month now which helps a bit. But my right hand is still affected quite badly. The fingers swell and get painful and the skin starts to crack and break. Just wondering if it was something else and that's why the mediction isn't helping

[Ianrussell69]

I’ve tried possibly all meds and finally got put on salidaphill(viagra) for my rainods I was a bit worried sceptical about taking it but it really works my hands have been very good pain wise still drop things every day but the pains much better

[overnighthearingloss in reply to Ianrussell69]

It improves blood flow to the extremities.

[Ianrussell69 in reply to overnighthearingloss]

Yes it dilates the blood vessels and oddly enough sometimes makes your nose run

[Hidden in reply to Ianrussell69]

My nose always runs but that was even before i was on medication

[Lisalou19]

My hands do exactly the same as yours. Worse on the right hand. Especially worse when it’s cold. No idea why , might be worth a dermatologists looking at this x

[Hidden in reply to Lisalou19]

I was never sure if it was due to reynauds or something else. Strange how it's only the right hand with you too. I am seeing a dermatologist on Thursday for something else so will mention it.

[Lisalou19 in reply to Hidden]

Please let me know what they say. Mine only comes with other flaring symptoms. I doubt it’s your usual dermatitis that a lot of hair dressers get . My skin splits as soon as I knock my hands or have an itch. X

[Hidden in reply to Lisalou19]

I will do. I have had raynaud's for a few years but nothing like this. My hands were just really cold. The last 3/4 months they have gotten worse. I show pictures to my gp but she never makes any comment.

[Hidden in reply to Lisalou19]

Can I ask if you have any other physical changes with your symptoms? There has been a big change in the texture if my hair. Was always in good condition. Seemed to change instantly. So dry and brittle and breaks easily.

[Lisalou19 in reply to Hidden]

Someone on here described the hair changes to a T, like candy floss!!!! I’ve lost a majority of my hair, very thin, if I leave it to dry I look like I’ve been electrocuted with all sticky up bits of hair everywhere. I hardly wear my hair down anymore as it’s so thin.

Apparently this is very common with most diseases that cause inflammation x

[Hidden in reply to Lisalou19]

Aw i know the feeling. You described mine exactly. It's so bad when I let it air dry. Looks like I have been electrecuted too. Nothing seems to help either 😔 X

[Lisalou19 in reply to Hidden]

It’s all about getting the inflammation under control

But we all know how difficult that can be 😔x

[Hidden in reply to Lisalou19]

I know it is. I'm still.in the process of trying to get a diagnosis. Have you fpuns anything to be helpful? I read on your profile that you were struggling to get a diagnosis too. Have you seen a specialist yet?

[Lisalou19 in reply to Hidden]

Thanx to this site I found a specialist in London. I’ve struggled for so many years. It’s beeb hell on Earth.

I’m now medicated with a diagnosis of UCTD whilst undergoing further tests. Finally though to be told I was right all along offers some relief.

I have a lung function test next week and an mri scan, it’s all moving pretty quickly now x

[Hidden in reply to Lisalou19]

Aw that's really good. Yes it must be a relief for you. Did you just see a rheumatologist for your diagnosis?

[Lisalou19 in reply to Hidden]

His a rheumatologist yes, a professor in this field . I’ve seen other rheumatologist that just run standard bloods then give me a blank look when they are negative. This doctor did a full anti body screening. I feel very grateful to of met him through this site

X

[Hidden in reply to Lisalou19]

I am thinking of seeing another rheumatologist privately as my one is very dismissive of everything and i can't see him again until may anyway X

[Lisalou19 in reply to Hidden]

My only suggestion is do some thorough research. Starting on this site is very useful.

It takes a good rheumatologist to look past the standard blood screenings

Honestly my story is so long, and it is so mentally draining to find the answers you so desperately need xx

[Hidden in reply to Lisalou19]

Yeah that's what i am going to do. It is very draining. I have a nice gp now after my last one was convinced it was all due to anxiety. So i switched to a different dr. After being on this site it's reassuring to know i'm not alone. Sad to hear do many people get dismissed due to Dr's thinking that.

[Hidden in reply to Lisalou19]

Hi another trip to the gp today. An increase in my raynuads medication. I mentioned the temperature regulation again. She says it's not common in lupus. Think she should go on this forum. So many people on here have the same problem. X

[Chanpreet_Walia LUPUS UK]

Hi Sophie2009,

In people who have Raynaud’s, the small blood vessels in the extremities are over-sensitive to changes in temperature. This causes a Raynaud’s attack where the fingers sometimes change colour (but not always) from white, to blue, to red. Sometimes the fingers may become painful or have a tingling sensation during the event. Symptoms of a Raynaud’s attack can last from a few minutes to several hours. We published a blog article on ‘Coping with Raynaud’s Phenomenon’ which you can read here: lupusuk.org.uk/coping-with-...

[Hidden in reply to Chanpreet_Walia]

Hi yes i know i have raynuads and I am on medication for it. It helps a little but my right hand still gets swollen and painful and cracking skin. That's why I thought it could be something else also. As the medication isn't helping with that.

[robertbob]

Hi Sophie

I cant offer any advice on what it might be but can say that your hand looks remarkably like mine, in terms of swelling, colours and the nail ridges. Im being treated for an autoimmune disease but teh consultant seems to accept that it doesnt explain the swollen, discoloured hands. If I find out more then I will let u know if that would be useful.

Mine have got slightly better since Ive taken up running and more so since I started intermitant fasting. Both can reduce inflammation. tbh intermitant fasting is the first thing which has really seemd to help. Though my stomach protests loudly with breakfast not until 10 am.

best wishes

R

[Hidden in reply to robertbob]

Hi thanks for the reply. I was back at the Dr's again today. She had increased my medication again. The only thing is my blood pressure is on the low side because of it. So thinking if it's increased then will make it go even lower. Can I ask what you are being treated for? Mine is still under investigation.

[robertbob in reply to Hidden]

Hope Dr's appointment went ok. I was started on meds for APS after seeing consultant but no one seemed sure. So Im also still under investigation if NHS Wales could be bothered to investigate. Hope u get some useful answers soon.

best wishes

R

[Hidden in reply to robertbob]

Hi my gp got me a rheumatology appointment today. More tests being done. One specialist I saw thinks definitely something autoimmune then the other says definitely not. So not realky any further forward.

[Hidden in reply to robertbob]

Hi i feel so deflated as i am still getting nowhere. Can i ask what autoimmune disease you are being treated for?

[robertbob in reply to Hidden]

Hi Sophie

Sorry feeling deflated. I know how frustrating the whole thing can be .

Im being treated for antiphospholipid syndrome (APS) with low dose aspirin but consultant wants to try fragmin or clopidogerel. But like I say no one seems sure and NHS Wales doesnt seem bothered. APS is suspected on account of brain lesions, neuro problems, livedo etc.

No one has suggsted that my swollen discoloured hands are to do with APS. So they are still a complete mystery to me.

tc R

[Hidden in reply to robertbob]

Back to rheumatology yesterday so more bloods done. He's referring me for infusions for my reynauds. Like i say it is very frustrating when one specialist thinks one then then another disagrees 👎

[DJK99]

Hey Sophie - your hands could be mine right now! Ill message you a photo... I have had raynauds pretty much all my life and am on nefedipine too. But Im flaring right now (have SLE) and my right hand is killing me... itching, splitting and red hot with joints swelling and stiffness. Not much fun is it... ah well, hopefully it will calm down soon for you - Im on methotrexate but came off it for an op for6 weeks and look what happend... mind you I have another rather nasty diagnosis right now too sadly and that apparently can bring on lupus flares all round.

The fasting sounds interesting... I don;t eat between 9pm and 1pm if I can manage it but only as Im off work right now. Doesnt seemed to have made a huge difference... but cutting down on all sugar in foods, no alcohol too and keepng to a strictly natural/healthy diet is essential... and lots of water all day.

Hope it improves pronto Sophie... so sorry youre going through this. Have you had your bloods checked such as Complement 3 and 4, and your neutriphils? Have you only been diagnosed with Raynauds?? Keep an eye out for the photo... ;). D x

[Hidden in reply to DJK99]

Hi thanks for the reply. Sorry to hear you have the same problem. I have had raynaud's for about 5-6 years but never like this. It was only my hands that were really cold. My Dr has increased my nefedipine to 2 in the morning and 1 at night. Did you find it lowered your blood pressure? Mine is lower after it was increased the last time. Also do you have a problem regulating your temperature? Mine constantly fluctuates. My rheumatologist checked my complement levels in September. They were in normal range. I have mild lymphopenia and vit d deficiency.

[DJK99]

Oh - I cant send you a photo apparently... I did post one recently that you might be able to find as was struggling with my hands too... but its been a while now and theyre much worse... Just wanted to show you youre not alone..... All the best and keep us posted if you get anywhere with the docs D x