Nifedipine ER: My doctor just put me on... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Nifedipine ER

Jmrose profile image
16 Replies

My doctor just put me on 30 mg of Nifedipine ER (extended release) as I have had digital ulcers from my Raynauds since May. I have Raynauds, Ra, suspect Scleroderma even thought blood works says no and Interstitual Lung Disease. The pain is unbearable and has been since the ulcers started. I am currentlt taking Percocet until I get my 2nd appointment with pain management. I am concerned about some of the listed side effects. Can anyone share their experience and resukts please.

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Jmrose
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16 Replies

Hi I have just started taking Nifedipine also and hopefully it will save having Iloprost infusion again. The side affects do look scary on the leaflet but we have to bear in mind that not all people get them .

Good luck with this and hopefully you will not be in so much pain.

Take care

gindy profile image
gindy

I'm on adelat which is nifedipine re 30mg so exactly the same meds as you. In the beginning I got bad headaches from it, but they subsided within about a month. As I got used to it the headaches faded.

I don't get any other side effects, but tbqh I don't think it helps with Raynauds our SSc. From what I gather it's a shot on the dark with this medication, and doesn't help a lot of ppl.

I'm actually going to talk to my gp about the benefits, or lack of imo of this medication. It could be it's holding further symptoms at bay, but isn't making current ones any better.. Who knows lol.

I think in short you should try the meds out, see what, if any side effects you suffer compared to any perceived benefits. Then make a decision with your doctor.

GlasgowHen profile image
GlasgowHen

I would seriously talk to your Dr about iloprost infusions. Lots of info on this site about them. I have them regularly and for the most part keeps the ulcers etc under control although I have recently developed a small one which is healing up on its own. Nifedipine did nothing for me. The other thing to talk to your Dr about is sildenafil (viagra) again info on this site and many people have had good results with that too.

The ulcers and very painful,hope you get some relief soon

Delissedoesclay profile image
Delissedoesclay in reply to GlasgowHen

What is this llprost treatment ? they put me on inifedipine does help somewhat at least I am not crying still painful I've had an ulcer on my finger for three months now

cleoshome profile image
cleoshome

I have been on pericardial(same thing) for years, with no side effects. I have scleroderma, the systemic form and severe Raynaud's. It does help. They have to always list tons of side effects on all drugs due to the FDA to cover their behinds. It is rare for any side effects. Feel ok with taking it. I am as also a nurse.

Delissedoesclay profile image
Delissedoesclay in reply to cleoshome

Have you heard of water treatment if so could you let me know I am searching can't find anything on that for the ulcers

Jmrose profile image
Jmrose in reply to Delissedoesclay

I have not heard of water therapy. I have heard putting hands in wam not hot water helps when having an episode.

Jmrose profile image
Jmrose

Thank you all for your feedback. I will take it all into consideration. I have been on it for 3 days now with only slight headache the first 2 days. I am going to give this medication a trial run. My GP not my Rhumy put me on it and I have a 2nd opinion with another Rhumy on the 18th. I will keep you all posted on my progress and thank you again for sharing .

in reply to Jmrose

Hi How are you getting on with Nifedipine now? I had to stop it after 4 days as I could no longer walk at all and I was sick 😷 .I ended up sleeping for 3 days . 😴

Will have to try something else. Good luck x

Jmrose profile image
Jmrose in reply to

After my doctor dropped the dosage to 30mg I am doing much better. Just a little itching but its getting less and less each day. Thank you so much for checking up on me. Do you know what your doctor will have you try next??

Glynis profile image
Glynis

I would talk to your Dr about Iloprost, or to refer you to a hand surgeon, with a view to haveing it debrided. You may also need antibiotics Hope you get sortrd soon

treesie profile image
treesie

I have been on Procardia for 35 years. Does help, however I did get an ulcer to my bone and the pain unbearable. Took Percocet and put antibiotic ointment on it. ended up losing the tip of my finger because gangrene set in. I am much more careful staying warm. My DR. is a rheumotologist that specializes in scleroderma and added Cialis(Viagra) 2 pills a day and it helps tremendously. Good luck to you.

Delissedoesclay profile image
Delissedoesclay

What are you doing for your ulcers

Jmrose profile image
Jmrose

Taking the nifedipine and using the nitroglycerin cream 3 times a day. I have had my ulcers since May. I started out with 6 and now down to 3. But I only stated this regimen a month ago when i saw a new Rheumy. Wish i would have started back in May.

Billyboy240863 profile image
Billyboy240863

Try small doze of viagra helps me

Jmrose profile image
Jmrose in reply to Billyboy240863

Thank you. I will talk to my doctor about it.

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