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Raynauds & Nifedipine Use


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#1 Lil Dee

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Posted 18 January 2012 - 09:20 AM

Hey guys/gals,

I have for the last few months been on Nifedipine to try and ease my increasing Raynauds episodes.

I live in the UK, and started taking it after my summer holiday last Septmber, in preparation for the winter on-slaught. *groan*

The weather has been much kinder this year than the last couple, so in that sense I've been quite lucky as it's not been that cold outdoors.

However, my Raynauds attacks don't seem to have diminished or eased in any way - in fact, I am currently typing with a purple tipped finger, which is just not responding to anything. OK, It's not bright purple, so I'm not panicking that it's going to fall off, but it is continuosly uncomfortable, cold and starting to worry me a little.

Also, the nail bed on this finger seems to have a couple of "bruises" on it, very small, but very much there to see if you look, and also at the side of my nail, I have been struggling with what I can only describe as an in-growing nail issue. I have a professional manicure regularly, and the girls are very aware of my special needs (giggle) and don't touch my cuticles etc. and are very careful, and I'm sure they would have noticed....

Anyone got any advice for me - should I be doing anything to help my finger/hands (which are also very red, swollen and dry at the moment) I am being prescribed the Nifedipine by my general practitioner (on the Rheumatologist's recommendation) do you think I need to pester my rheumatologist earlier than scheduled, or should my general practitioner be able to help ?

Thanks in advance to all you lovely people **HUGS**

#2 Joelf

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Posted 18 January 2012 - 03:31 PM

Hi Lil Dee,

How nice to hear from you again! :bye:

Sorry to hear you're having problems with Raynaud's attacks; I suffer with Raynaud's as well so can sympathise. As you say our UK winter has been a bit milder than last year, but I've noticed especially on the few cold mornings that we've had, the familiar 'white fingers' are re occuring! :( I've never taken Nifedipine medication but quite a few of our members have and we had a thread recently Questions on Medications For Raynaud's which includes lots of advice which I hope you'll find helpful. I've also included a link to Raynaud's Treatments and our page on Raynaud's Prevention includes advice which may help to avoid you developing a Digital Ulcer on your purple finger.

I've found that if I can manage to keep my core body warm, as well as my fingers, that can sometimes help to prevent a bad Raynaud's attack; it might be worth a visit to your general practitioner with your purple finger and red, swollen hands to see if he can suggest something to help your symptoms, before you see your rheumatologist again. My general practitioner is very 'on the ball' so I usually approach her first if, for instance, I were to develop a chest infection. She would prescribe me something to help and then if that didn't solve the problem within a reasonable time span, she would contact my lung consultant.

I do hope that you will soon find some relief from the unpleasant symptoms with which you're suffering.

:emoticons-group-hug:

Best wishes,

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#3 marsha

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Posted 18 January 2012 - 04:26 PM

Hello Lil Dee,

I have been been plagued by Raynaud's for 11 years. I started off on Nifedipine; was on it for a couple of years; came off and tried Isradipine, another drug of which I can't remember the name and then Cialis - all failed. The Sclero doctor put me back on the Nifedipine because it helped with about 10 per cent of the attacks. We too in Northern Maine have had a much milder winter ( thank goodness ). I was told that in some patients with Raynaud's nothing helps :( I hope you find something that may work for you; Raynaud's is the absolute worse when you can't feel your fingers and they just don't work. I actually have it worse in my toes. Good luck in finding something that may alleviate the symptoms.

Marsha

#4 KayTee

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Posted 18 January 2012 - 08:13 PM

Hi Lil Dee:
I've had primary Raynaud's for many years and it got much worse with scleroderma. I found the nail beds on either side of my index and third fingers get very sore if the nail grows, and then sometimes gets hard and white. My understanding is your nails and fingers flatten with scleroderma so the nail 'eats' in a little bit on the skin. My 'cure' is to keep the sides of my nails filed gently and carefully every couple of days. And I've taken nifedipine for a while; not sure how much it helps but I'm unwilling to stop it to find out it doesn't.
Good luck and best wishes.
Kay Tee

#5 CraigR

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Posted 19 January 2012 - 05:42 AM

I've dealt with Raynaud's of varying severity for 35 years (can't believe it's been that long...). Sufferers seem to have different luck with different drugs. At a time when I was having severe trouble, Nifedipine helped, but was not enough, so Prazosin (minipress) was added. This is an older blood pressure medication that increases circulation in a different manner than calcium channel blockers (Nifedepine). The erectile dysfunction drug (Viagra [sildenifil], Cialis) have been very helpful for some, since they work on a principle of increasing circulation. Nitroglycerine cream has also been helpful.

Possibly the best prevention is to keep the central core of the body warm. Since the body tends to cut off circulation to the limbs when cold for preservation, handwarming may be futile if you are otherwise cold. It might be wise to keep a little warmer than you find most comfortable.

Your doctor might hesitate to give you these drugs because most lower blood pressure. A possible solution is to acquire a blood pressure testing device for home use (available at any pharmacy [chemist]). That way you can check the pressure yourself,

Good luck,

Craig

#6 Lil Dee

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Posted 19 January 2012 - 08:19 AM

:thank-you-2: Thank you all for your informative responses....and yes, Jo, I'm still hanging around these parts, though not posting quite as much (I'm in a 'down' mood at the moment, and combined with the fatigue, I don't feel much like doing anything other than sleeping - but I am consciously trying to work on that)

The links you've posted are very interesting, and I've had a good nosey around and learnt quite a lot that will definately help me.

I couldn't help but giggle though, when you all mentioned about keeping my core body temp. up - I have a fan on my desk at work, as I regularly "glow" due to overheating, and need it to keep me in check on many occasions these days. I do try and keep my hands/arms warm - I use gloves/mittens, and have a supply of disposable hand warmers which I use regularly.

The reason I have posted about my Raynauds this time round, is because this one finger tip seems to be permanently cold, no matter what I do.

I am cautious regarding medication, as I do already have low blood pressure (always have had), so the Nifedipine was a trial this winter to see if it helped or caused me additional issues. I'm already on Citalopram (an SSRI anti-depressant) which are supposed to help Raynauds, and those wonderful ladies at the salon have a Paraffin Wax treatment that I splurge on occassionally.

Kaytee - your comments ring so true, about the skin getting hard around the nail edge, it results in my WORST habit - I bite round my nails......YUCK ! I will try and make a point of gently filing the "corners" every couple of days to see if that helps, and resist the temptation to bite the offending skin away (which my rheumatologist has already told me off about !)

Hugs :emoticon-hug: to all of you out there in Cyber Land. You know, I don't come here nearly often enough. :thank-you:

#7 Patty1

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Posted 21 January 2012 - 08:49 AM

Hi Lil Dee,
I too like many others have been plagued by Raynauds for years, even before I was diagnosed with Limited Scleroderma. I suffered attacks, but back then, it was in my knees and feet of all places, but I just chalked it up to bad circulation due to smoking. Never gave it any thought. But then when my hands started to go numb and change colors, and I started to develop spots on my left index finger, and my right middle finger that looked like old blood blisters did I get concerned and went in for a visit to my primary care doctor. He knew what it was right away, and sent me to a Rheumatologist. I was very lucky getting a diagnosis so quickly compared to many here who had to wait years, and suffer through all kinds of tests and disappointing doctor visits. But the long and short of this story is I have Raynauds, pretty severe, all of my fingers turn purple among other colors. I have had ulcers, cuts that won't heal, etc. I too have low blood pressure, but, still, I am on several medications for Raynauds, including Norvasc (amlodipine) Revatio (sildenafil) doxazosin (bp medication) Lisinopril, and Atorvastatin (believe it or not, it is thought to help Raynauds) and asprin. (81 mg) My Rheumatologist has suggested meds like prozac, but I really don't want to go on anti-depressants, and I think I am on enough meds for Raynauds as it is! I have to monitor my BP regularly. My doctor tells me as long as it doesn't dip below the low to mid 90's/50's I should be okay to take the meds. It does dip sometimes, and I have to back off of the Revatio for a dose or two.... I also periodically have infusions of Alprostadil ( prostaglandin) which require 72 hours-3 days in the hospital. It kind of jump starts all of the other medications and helps with the severity of the attacks. Fortunately I have managed to keep all ten fingers and toes for the last 6 years, but any help is worth it. I don't need to tell you how painful and uncomfortable it is.
What helps with the low blood pressure is eating several small meals through out the day, I am not talking 3 course meals, but something like a bowl of cereal, or a soft pretzel ( I love them!) or a bowl of soup; just something small which does help to keep my blood pressure up. With all of the meds I am on, I have to.
So there are a few suggestions you can pass along to your doctor, or not, whichever you are comfortable with. I know so far, all of these meds are keeping my digits intact, still a little scarred but I still have them thank goodness! Stay warm, and keep a positive outlook, that helps too! Best Wishes,
Patty

#8 Amanda Thorpe

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Posted 22 January 2012 - 02:26 PM

Hello LilDee

Patty (nice to see you again!) mentioned Iloprost and it's a good thing to mention for Raynaud's, have you had or do you have Iloprost infusions? I know of people who have the regularly and find them very beneficial.

What are you doing to address your low mood? I have had scleroderma for 4 years and have just started bereavement counselling, see my thread about it here, at 39 my life dies but I didn't and I have just realised I need to grieve it goodbye. I am not saying ou need counselling of course but it helps to be aware that we need different things at different times. Sometimes sleeping and hibernating does the trick other times we need outside help.

Take care.
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#9 Patty1

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Posted 27 January 2012 - 09:39 AM

Hi Amanda and Lil Dee,
Amanda had a very good suggestion, which I second...I have been in counseling for all of the last several years, dealing with this disease, and other factors, such as having to give up working and a good chunk of what I used to be able to do for relaxation and fun is a mourning process, and dealing with it is crucial. Not to mention your self esteem which takes a beating; it is a constant struggle to keep it "in the day" especially this time of the year when forced to stay indoors allmost all the time. It helps a lot to be able to talk to someone who can give you coping skills, not to mention a place to dump your worries without upsetting your family. ( I hate to burden my family too much with the fears and worry that plague me) It has kept me sane!! Doesn't mean you are nuts, just that you need help every now and then with the inevitable emotions that come with having a disease such as this.....I can't say enough about it...
Patty.

#10 Lil Dee

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Posted 31 January 2012 - 03:39 AM

Well, what an eventful week. I went to see my general practitioner, who contacted my Consultants office, who contacted me, asking to see me on Wednesday morning last week. So, I bobbed along for the appointment - the "bruises" I mentioned under my nail by the way, are "splinter hemorrhages" - only to be admitted to hospital there and then, for a five day Iloprost infusion !! :o

Cue the chaos....I had left my PC at work all signed in, along with handbag on my desk (I just took the essentials with me to the hospital) so having given up several viles of blood, and having an ultrsound on my arms (they were being ultra-cautious, and wanted to ensure I didn't have an obstruction of any kind, as oppose to it being Raynaud's causing my finger issue) I then headed back to work, to grab my stuff and handover my work.

Met hubby at home, grabbed a shower, some essentials (I've never been in hospital before, so had no idea what I did and didn't need!), then it was back to the hospital.

I have been there until last night, when I was finally discharged. I have had a 24-hour, 5 day Iloprost infusion, which I'm hoping will help reduce the Raynauds. At the moment however, I've still got my hand sat on a hot water bottle, as my middle finger still refuses to warmup :glare:

I have been very lucky, I have had no nasty side effects from the infusion at all, not even a headache !! However, my veins were my fall down, as they really struggled to insert a cannula, and for it to work for any length of time. Over five days, I've had four cannula sites (OUCH!) and my arms a little battered and bruised from the attempts made to find the four that we used. Still, I'm home now, and have time to get my strength back, before heading back to work. We've had to cancel a holiday, but have decided to keep the leave, so we can make sure I'm fully rested after my 2-hourly blood pressure checks (yes, even during the night !) I'm sure you can all relate to the fatigue I'm now suffering with!! Plus, it gives us some time together - I've missed my hubby :wub: and my two kitties very much whilst in hospital.

Amanda/Patty, you comments regarding counselling have got me thinking. I did go for counselling a few years after losing my Mum, when I realised that I had a lot of anger surrounding her death (the rest of family is now completely estranged from each other) which helped, so I may consider seeking some support again - thank you for your positive comments surrounding this option.

So, I'm now going to have a lay down, and catch up on some of that sleep I've been missing out on.

Thank you all again for the support :emoticons-thankyou:

#11 Joelf

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Posted 31 January 2012 - 08:48 AM

Hi Lil Dee,

Goodness me, you have had an exciting time of it!! Still, perhaps in a way it's better to have the iloprost infusion straightaway, so you don't have time to worry about having it done. Perhaps a little more notice might have been helpful, especially with regard to you having to dash off from work with very little time to prepare everything. When I had to go into hospital for 5 days for tests, like you, I'd never stayed in hospital before and so I took enough clothes for a world cruise as I wasn't sure what I would or wouldn't need!! ;)

I'm so pleased that you didn't suffer any horrible side effects from the iloprost infusion (I've never had iloprost myself, but I know some of our members have had a rather unpleasant time when receiving it) and I really hope that it does help with your Raynaud's symptoms. Enjoy your rest and the time with your husband!

:emoticons-group-hug:

Best wishes,

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#12 KayTee

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Posted 01 February 2012 - 06:30 PM

Best wishes for a speedy recovery.
Warm hugs
Kay Tee