Raynaud's, Looking for advice. - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

9,025 members4,394 posts

Raynaud's, Looking for advice.

BertieB_280616
BertieB_280616

Went to see another specialist, I had been diagnosed with primary Rays about 3 years ago. The 1st specialist started to doubt his diagnosis after lack of success with medications;

Amlodipine

Nifedipine

Losartan

Felodipine

Iloprost

Sildenafil

Fluoxetine

Naftidrofuryl

I had a nail capillaroscopy which was normal. The doctor said that it's fine and that's the end of it. That it'll improve with age, I'm worried as I have suffered since I was a child and it's only getting worse as I have aged. I'm 20 now and struggle with joint pain as well as several attacks daily. My ANA is negative and blood work seems fine. I really struggle with it, it gets me stressed out to the point of crying, I find some days I don't want to leave my bed as its too cold.

I'm looking for any advice. I take cocodamol for the joint pain, cbd oil also and take ginko biloba to try help... Thanks in advance x

14 Replies
oldestnewest

Hello BertieB ! Poor darlin' I hardly ever check Health Unlocked but it is a brilliant webpage for other peoples experiences with different medicines etc. I too have had Raynaud's since I was a child, it's so debilitating when you are the only person who feels cold and you just don't want to get out of bed. I never even new there were any medicines for it until I happened to be in with my GP about something else and had purple fingers because I was having an attack. She said "Oh I see you have Raynaurds, I can give you something for that" she prescribed me Nifedipine and I have been taking this for aprox two years now.

It has been life-changing for me, but I see that you had tried it and it didn't work for you ?

I used to just take 10mg twice a day but this winter I was getting blisters on my little toes so she said I could increase it to 20mg twice a day and that seems to have worked.

Have you got a good relationship with your GP or do you just have to see different ones each time you go to the doctors ?

P.S. I also take Ginko Biloba and I'm sure this helps. I also took notice of some other lifestyle advice from Healthunlocked when somebody suggested that I always choose to wear "Woollen Socks" as well as wearing thin Leather Gloves even in the summer when nobody else feels chilly ! Also two or three thin vests or T-Shirts under your favourite jumpers or tops. One person even puts there trainers on a heater in the house to warm them up before she puts them on. x x x

Hi there, thanks for the reply. I see so many GPs sadly at my surgery. I don't really have a connection to any of them.

Hi Bertie, is it possible you could choose just one of those doctors that you think you might be able to talk with and make an appointment with the same one each time?

Also it's worth remembering that if you want to discuss quite a lot about stuff they Like you to book a 'Double appointment' so that you have plenty of time and don't feel rushed.

When I first took Nifedipine, I did get bruises all over the place but I didn't care as I hoped it might make the attacks less. After just a couple of weeks I no longer got the bruises.

How long did you try Nifedipine for and do you mind me asking what symptoms you got ?

P.S. Read everything you can on this site to do with Raynaud's to see if you can find anything helpful out. There are so many caring people here on this website who know how it feels, we are like supportive friends to each other.

It sounds like you need understanding friends right now ?

I sometimes have to wait 3 weeks to see the GP I like but if it is something more urgent, then I just see whichever GP is available and I don't have to wait this long.

But I hate trying to talk about something that is troubling me with a GP I don't even hardly know, that's why I suggest you choose one of them and book the appointment even if it means waiting to see them. x x x

I took Nifedipine for around 4 months, I stopped it due to nausea and it lowered my blood pressure to the point I would be very unsteady on my feet and very weak and dizzy

OH Wow ! I see. It always amazes me how different people react to different drugs, my friend was taking 40mg of Citalopram twice a day (I think) but I couldn't get out of bed on just 10mg so I reduced it to 5mg and made an appointment with my GP to explain that 5mg was fine, she laughed and told me it was NOT doing anything and she didn't know what to prescribe me as it worked for anxiety for most people!!

So she sent me to see a psychiatrice who prescribed me Venlafaxine and I started on a very low dose because I was so horrified by my reaction to Citalopram. But they got it Right and now I feel far less panicky and I feel more "Normal" than I've ever felt in my life. The thing was I simply believed that I had a panicky and depressive "character" rather than something being wrong with me but I'm so Relieved to be on Venlafaxine now.

But this doesn't help you. I am upset for you because I can't encourage you to try plenty of "different medications" until you get it Right. Because it seems that you have already done just that ?

Also I am not medically trained and so have no idea if there are plenty more that you haven't tried yet (I am a Truck driver, or if you live in the USA I am a Semi driver!) However I would encourage you to try your hardest to build a relationship with a GP you feel you could Respect and ask them if there are any other options that you haven't already tried.

Regarding medicines for anxiety and depression which I have had for years, most people just give up after trying just two different ones when there are hundreds of choices and it is just a matter of going through each one until they find the one with the least side effects, or side effects they can manage to put up with.

I feel for you. Please keep searching this webpage and read as much as you can about what other people with Raynaurds have written regarding their experiences darling. x x x

My goodness poor you - I have tried almost all the list too but iloprost does provide me with a lot of benefit although it doesn’t make it go away it makes it more manageable.

How many times have you had iloprsot ? It didn’t seem to work that well for me first time round but it has done ever since - wonder if it’s worth revitisting?

I had problems with side effects to all the other drugs (I do with iloprsot to but the side effects only last the five days your on it and the good effects carry on so that’s ok) so I haven’t revisited them. Maybe it’s worth another go at some of the medications if your now older than before and I imagine bigger if you tried them when you were young.

BertieB_280616
BertieB_280616 in reply to Rp321

I had 1 round of iloprost for 3 days, for 6 hours daily. I was put on the lowest strength and then even that was halved, I was having issues with headaches, blood pressure issues where It'd go low. The said on the second day about cancelling the treatment due to the reaction. It was an awfully uncomfortable experience and had no benefit on my Raynaud's.

Rp321
Rp321 in reply to BertieB_280616

That’s such a shame it didn’t work for you 😔

Do you live anywhere near London ? The royal free hospital are so good I can’t recommend them enough - they may have a way to help. Have you tried Botox injections ?

BertieB_280616
BertieB_280616 in reply to Rp321

I live in Scotland unfortunately, I have not had botox injections but I have heard they are quite helpful

Rp321
Rp321 in reply to BertieB_280616

To be honest it didn’t help me but there have been lots of promising results and it’s something that doesn’t have the same side effects as all the other medicines (I had absolutely no side effects at all from it) so yes maybe it’s a good avenue to look down - there’s always hope that maybe one day something may work.

Not sure how readily available it is though as I got it as part of a trial.

Sometimes you have to be quite assertive with your GP. many don't really know a lot about Raynauds and associated things like CREST. It's a fob off ,"oh, a lot of people have cold hands, just get on with it if nothing seems to work."

I try to manage mine as much as possible, cotton gloves to go to the fridge and handle anything cold, other cloves for the vacuum cleaner, they are lined up on the radiator so are warm to put on. Before going out I warm shoes, gloves etc. The SRUK shop has various things which help, self heating insoles, silver thread gloves and socks. Don't know if there is something similar in other parts of the world.

You may also like...