raynauds medication

are you on any raynauds medications?? my new consultant asked me if i wanted treatment for it...what do you take and how has it helped?? I said no as my raynauds isnt painful...its just i have very cold hands and feet and sometimes the numbness in my toes is a bit tender but never really painful...I hate being so cold all the time...does it help with that at all?? thanks x

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  • I tried nifedipine, it actually made the symptons worse :( looking at other things now before going for the iloprost infusion.

  • I'VE BEEN TAKING IT FOR 2 YEARS NOW. WHEN I WAKE UP I'M ALWAYS "COLD" UNTIL I TAKE ONE.IT SEEMS TO KEEP IT AT BAY.I TAKE 4 /5 5mg CAPS A DAY IN WINTER,BUT IN SUMMER I GET WAY TO HOT AND POUR WITH SWEAT SO I TAKE 2/3 CAPS INSTEAD

  • Your consultant was quite right I think. If your Raynaud's is a bother to you then you consider medication. As far as I know many people keep themselves warm with layers of clothing, gloves etc. But if it gets limiting and you can't do what you want or if you get ulcers, then you have to do something about it. I guess that if you went to see the specialist it was because your Raynaud's was bothering you. I have been on nifedipine for many years and I am glad for it.

  • try a low dose .Iam not so cold and white on it

  • Hi, I've been on nifedipine for 6 years now, and it works for me. Although I do have a couple of side effects, they are out weighed by the benefits. 5mg three times a day which can be adjusted up and down depending on the season.

  • Iloprost infusions, diltiazem (adizem), aspirin. All help with circulatory problems.

  • Have a mild form that affects only my hands and on 5mg a day but have stopped taking them for last few days as the joint pain, particularly knees, was worse than the white/grey fingers which the nifedipine prevented.

    Back to two pairs of gloves before stepping outside in winter.

  • hiya am on low dose of nifidepine which helps me, 5mg, but also layers help, gloves, scarf sometimes inside and outside, thermals (got some lovely ones for local M&S outlet).

  • thanks everyone for your input...i think layers might be the way forward and maybe some decent footwear...im a nightmare when indoors as i dont wear anything on my feet then they get frozen and take forever to warm back up!!! my consultant is only wanting 2 months between my first appt and my next one...he really does seem to want to stay in control of my symptoms. (going for a barium meal for my swallowing soon). I think i'll try without the meds for now but its useful to see how they affect other people x

  • I am on nifedipene 3x 5mg a day. They upped my dose to 10mg twice a day but I felt light headed and dizzy constantly. To a stage of feeling sick. So I lowered it back to the 5s 3x daily. And went to my gp. Who agreed with my doing so. This works great for me. But still have a lot of pain in my arm. Which I am waiting to find out the cause. IV had shoulder xray.& Themography. Went for barium swallow o. Friday 11th Jan. Waitin for all results now. My raynauds specialist apparently waits till all tests are done be4 givin any results. Will let every1 no as soon as I no . Good luck to all suffering. And keep warm.

  • I actually take Liquid Prozac, just a 5ml spoonful a day, this was recommended by my rhuematologist. It does help but I still have to wear layers & gloves etc. I prefer to wear pure wool like cashmere lined leather gloves(for driving) & I also have some down ski gloves for when walking around, I find sheepskin boots ideal for slippers in the house.

    I did have iloprost infusion but it the benefits only lasted for a few weeks.

  • Jensue, Did you find the prozac at least helped with the fingers turning white. Percentage wise, how much would you say it's helped.

  • It does help & cut down the number of attacks & the length of them by about 40%. The liquid Prozac is supposed to be better than the tablets according to some tests done at the Royal Free (so my Rheumatologists explained). My Raynauds is secondary to Systemic Sclerosis so is quite stubborn to treat so anything that helps is worthwhile giving it a go.

  • I have primary reynauds. My GP tried to put me on mediciation long term with no adjustments planned so I declined and manage with clothing, warming aids and excercise (aerobic excercise really helps!). Also paracetamol as soon as I think I am getting a fever. However really depends on how your symptoms though. Good luck.

  • Ginger is very good for circulation. I put a couple of slices of fresh ginger in hot water (ginger tea) and also have it in juice every morning. It really helps and has no side effects.

    Gloves are a must too. Ax

  • AMDP,

    Do your fingers still turn white, or has it just diminished the symptoms. I would just be happy for any improvement.

    Thanks,

    Fran

  • I was on Nifidipine originally and it made me very ill, they then switched my to Amlodopine and was on that for over a year. They decided to cut that down and I had some serious issues result from that, but I now take Sildenefil but it is quite strong and you would probably be all right on a low dose of Nifidipine or Amlodopine to see if it helps you.

  • Hi I have just started on fluoxetine, 20mg daily. This is for primary Raynauds as I am struggling to prepare food and make meals in the kitchen due to the sensitivity and pain in my hands. All other medication has given me nasty side effects, so I am hoping that this will help, although I have been quite reluctant about taking medication, this has given me no side effects so far.

  • Hi im on 20mg fluoxetine and 5mg nifedipine 2 times a day don't think this is helping me at all my hands are startin to swell I'm all ways freezin no matter how many clothes I were I actually want to hibernate this winter it's that bad

  • i would like to tell you that some of the drugs mentioned here are artery openers which allow the blood to move freely and therefore make your symptoms a lot better,my daughter has reynauds and was put on the newer type for a while which showed no results at all due to the fact she was unable to digest the coated tablet in her stomach which she has issues with anyway,gp then changed her to a more common one in capsule form and it was amazing,she had veins at last !!! and symptoms went away almost immediately,if you are at the stage of seeking an opinion from a doctor then take the plunge but it can be trial and error as to wht works for you .....

  • Carol, would you mind telling me what medicine she's taking and the dosage.

    Thanks, Fran

  • i have just posted a reply,let me know if you have any queries as my daughter and myself have multiple issues

  • I no the nifedipene R vessel openers and they really do work. I no when my next 1 is due due to vessels closing at this time. But just wish they would sort something out to stop the pain in my full arm. But I wouldn't ever give the nifedipene up. best thing ever in my eyes.

  • thanks carol I think i might ask more when i see the consultant in January

  • the first med was felodipine which apparently is one of the newer ones but as i said her stomach issues meant it didnt dissolve correctly internally,,it was a good few months before we realised that because we thought the diagnosis must be wrong,as there was obviously no effect at all,we have a great set of GP'S so went back and explained and she changed her to a gel capsule called nifedipine which worked immediately,no noticed side effects she is well and WARM ,we find layering clothes works well and merino wool a saviour as its lightweight and regulates your temp very well,socks,ugg boots,slippers,thermal underwear,knitwear,hats etc all can be bought with merino wool in them,i have it mildish i'm 45 and my daughter whos 21 has it bad ,

  • Thanks Carol for the info.

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