Medication for Raynards: Hi Everyone. I... - Scleroderma & Ray...

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Medication for Raynards

Summerrain14 profile image
18 Replies

Hi Everyone.

I have Raynaud’s alongside Lupus and Rheumatoid Arthritis. My Raynaud’s is becoming more severe. My doctor was going to prescribe some medication for me yesterday but the 5mg version has been discontinued. I have been advised to speak to my Rheumatologist regarding suitable medication. Does anyone have any ideas to the possible medications that may help. This change is weather has made a dramatic change in my Raynaud’s.

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Summerrain14
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18 Replies
Heleno profile image
Heleno

I take nifedepine in the winter, it doesn't stop the attacks but I do feel it stops them lasting as long and they seem to be less severe. My dentist didn't want me taking this drug as it can exacerbate gum disease which I have so tried losartan last year but didn't feel that helped at all and rheumatologist said to go back on the nifedepine

Summerrain14 profile image
Summerrain14 in reply toHeleno

This is the medication my GP wanted to prescribe for me. The 5mg dose but it kept flagging up that this had been discontinued on her computer. I’m willing to try anything to help especially with the cooler mornings and nights now.

Heleno profile image
Heleno in reply toSummerrain14

My dosage is 20mg twice a day, haven't got it this year yet so hope it isn't discontinued

Summerrain14 profile image
Summerrain14 in reply toHeleno

My GP was saying it was just the 5mg so fingers crossed you will be able to get yours.

Sosie profile image
Sosie

Hi, I use Lacidipine 2mg daily (as I am allergic to Nifidipine and Felidopine). My rheumatologist added sildenafil three times a day last year and that has made a huge difference. I would ask your rheumatologist for that. Good luck.

Summerrain14 profile image
Summerrain14 in reply toSosie

Thanks so much for alternatives to speak to my Rheumatologist about. I certainly will run it past her and see what she advises.

KatieAnna profile image
KatieAnna

I take Tadanafil once a day after Sildinafil stopped helping and bigger doses caused headaches. I also take Amlodipine once a day. I take them all year round as I get ulcers easily. They stop the pain of the blood returning more than stopping the attacks of raynaulds. Good luck 🤞

I was on amlodipine til I got an ulcer then they switched me to nifedipine which is much better. 5mgis a very low dose. I start as the summer ends with 30mg in the AM and by midwinter I am on 60 mg2 times a day. I take sildinafil 20mg once day for pulmonary hypertension. I was in it 3 times a day at one point but hated the side affects and my PH got better so I was able to drop back. Hope that helps. I can’t see 5 mg doing much good at such a low dose.

Poshcards profile image
Poshcards

can anybody tell me where you are getting Nifedipine from! I have been told and seen online that it has been discontinued and GP has put me on Amlodipine, which isn't as good as I now have hand pains again x

Bluebird60 profile image
Bluebird60 in reply toPoshcards

I was prescribed Nifedipine a few weeks ago. It took the pharmacist a while to track some down. I think it’s adalat that has been discontinued but other formulations are still available.

Poshcards profile image
Poshcards in reply toBluebird60

Thanks, my consultant told me that but GP still giving me Amlodipine x

NewbieAP profile image
NewbieAP

Mine is mild, but 10 mg daily of fluoxetine has helped a lot and when I started taking it last winter, I noticed a difference within a week.

Bluebird60 profile image
Bluebird60 in reply toNewbieAP

Oh that’s great news for me. Had to stop Nifedipine due to reactions and now on fluoxetine. Nifedipine was great for hands much less pain stiffness and swelling but blood pressure was too low. Hoping Fluoxetine is as effective 🙂

Sanmateogirl107 profile image
Sanmateogirl107

amlodipine 10mg

Summerrain14 profile image
Summerrain14

Thanks so much to everyone who has replied to my post. I so appreciate it. x

Kimi9 profile image
Kimi9

I've been back to my doctors this week as the change in temperature has already affected my Raynauds quite badly, I'm dreading it when the winter arrives!! My doctor said that Nifedipine is still unavailable and has put me on 10 mg Amlodipine instead, I been on 5mg since April. Does Amlodipine help at all? Or is Nifedipine better?

Hello Summerrain

For my severe Raynauds I was given this medicine. I can honestly say it was the best thing I have ever had for the Raynauds. For the last 18 months I was prescribed Deonit 10mg Glyceryl Trinitrate patches 24hours. There are three sizes of doses I had the middle dose 10mg. It is being used by the London Royal Free - Professor Chris Denton team. My constultant put me on it. It will take a week to get used to it. You will get terrible headaches worse than migraines. But stick with it and after a few days the pain goes away. If you get the headache they say take off the patch until goes away. then put it back on. I did about 12 hours first day and threw the patch in the bin for the day. I gradually did a few more hours each day and got to 24hours. I change every morning. Please see about this patch. It has helped so much with the coldness and pain. It does not stop everything. But you will notice the difference.

Quiicas profile image
Quiicas

Hello. I have primary Sjögren Syndrome and last winter was horrible... Had Raynaud every day, many times a day... Them I was prescribed amlopidina 5mg (it can be doubled) because nifedipine was discontinued and it worked wonderfully for me.

The medications that woks to some doesn't work for others, so the best thing to do is to try and see what does you good.

Take care.

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