Scleroderma & Raynaud's UK (SRUK)
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Reasons why drugs won’t work for Raynauds?

Hello to anyone reading.

I have secondary Raynauds and Systemic Sclerosis. I don’t know if anyone can answer my question, but does anyone know why medication wouldn’t work for Raynauds? I’ve tried Nifedipine, 75mg losartan and now Sildenafil but nothing seems to touch it and wondered why? Why wouldn’t it be able to open up my blood vessels?

Any response greatly received.

X

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Hi missymoo

Never having taken any medication for Raynaud’s, which I’ve had for over 30 years, I’m afraid I can’t really answer your question but I did try a herbal remedy called Veintain®️ recently and that did make a difference after a couple of weeks. It’s a combination of Ginkgo Biloba, and cinnamon and ginger extracts, all of which are good for promoting good circulation. If the prescription drugs aren’t working it might be worth trying something different. As with everything though, what works for one may not work for another. If you look on the website for Natures Best you’ll find more information on there.

Hope you find something that works for you soon.

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I'm glad you asked that question. I am on Nifedipine 60mg, Losartan and Hydrochlorothiazide, which are keeping my blood pressure down (it suddenly skyrocketed - apparently, I was going into renal crisis) but these drugs are doing nothing for my Raynaud's. My hands are blue more than they are normal colored. I have been thinking about asking my Cardiologist about going on Sildenifil, but am afraid my blood pressure will go up again. I'll be interested to see if anyone has some answers.

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Hello, I had the same problems. I don't take anything now. Only Kallawalla. It's an herb. I rake vitamin E and D too. Hope this helps

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Hi missymoo, the answer is complex as the meds work for many - they work very well to me. Part of the answer is about the enzyme pathway's in our livers they turn the chemicals into metabolically active drugs. If you Google cyp450 or cytochrome paths you'll get some info. But a lot if it is luck. But think how some folk swear by aspirin others brufen others paracetamol for or a headache. Also allergies I've had anaphylaxis to penicillin and respiratory arrest when I broke my leg and they gave me pethidine.

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They don't work for me either. Iloprost doesn't work so I don't go in for that. I just put up with it and my hands are constantly purple as are my feet. I've also developed raynauds in my ears which is really painful. You might want to discuss having Prozac which is also a treatment for raynauds.

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Not sure how long you've been on them but it took about 2 years before sildenafil had a noticeable effect with me. I still get Raynauds attacks, but not as bad as before but most importantly my digital ulcer has healed after 20 odd years and I've had no new ones.

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Hi, I've had Primary Raynaud's for over 15 years. I don't use medication because I happened across a herbal product called Rutivite (sometimes called Rutin). which works really well for me. It 's active products come from Buckwheat, which is often used as a gluten free flour.

I actually bought it to see if it would reduce the "spider veins" on my legs (where I got it initially it was advertised for improving leg veins). I just bought a months worth to start with. There was no obvious difference in my spider veins. However my husband and my care workers started saying that there was a reduction in Raynaud's attacks and I realised they were right. I stopped after the first jar to see what happened and within 2 weeks of stopping taking them my attacks were getting worse again so I went back onto them.

I've now been taking it for about 10 years and would recommend giving them a go.

This is where I get mine from: - this link is to their smallest jar of only 66 tablets (33 days):

powerhealth.co.uk/rutivite-...

I was recommended Ginger but when I took it in tablet form it made me very very hot and then not long afterwards I would become really cold. However, It does seem to help me a little at food/drink strength eg ginger beer or tea.. Could be worth a try. I also tried Ginkgo Biloba, but I reacted very badly to it. My GP said "no" to cinnamon tablets for me.

Hope you find something that helps you very soon.

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I have the same dignoses as you. I was refused any meds for the Raynaud's because I have low blood pressure. Last year, my rheumy relented and allowed a cautious try of short acting nifedipine. I live alone and crashing to the floor can be a risk.

It made me feel very faint, gave me a bright red nose and shins but did nothing else. I've decided it's not worth it. I can hide my shins but don't want a boozer's nose!

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My husband has both too...they increased the dosage of his blood pressure medicine. Not because of his bloodpressure but because the medicine works to open up the narrowed blood vessels..he just started treatment with a rheumatologist and I'm hopeful he will feel an improvement..good luck and best wishes

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Hi. I was diagnosed with Systemic Sclerosis and secondary raynauds 2 years ago.... I've been battling raynauds for around 7 years. During the 2 years since diagnosis I've tried all those meds you mentioned plus illoprost infusions. Only illoprost made any noticeable difference in that my ulcers healed and I didn't get any new ones while receiving infusions twice a year.... no improvement to the actual condition unfortunately though. I had to stop the infusions due to my RA because I couldn't remain seated while on the drip.... back pain and numb legs. At the min I'm suffering in silence.... well almost 😉 until I see my Rheumie in a few weeks. I find summer is the most embarrassing time because my hands and feet are dead white and I still get terrible hot aches pain, people can't understand how at 25c I am so cold..... feel a bit of a freak 😔

Sorry I can't be more help but just to say you're not alone.

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no drugs will work if you dont learn about vasoconstrictors and vasodilators. l am not just talking about getting rid of your rhoomies in favour of vascular specialists! how many of you still take over the counter meds that are vasoconstrictors, other than paracetamol and aspirin you can prity much forget the rest l will continue anon because this app is crap

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so your taking a directed drug to make a man errect and you expect it to work on your hands der l fink ders a point were cheapness dont work, what ya fink? how many take nitrates or calcium channel blockers or potasium channel openers. my hands still flick between white and red with the odd blue but that is it! beleave me when l tell you im on the upper scale for microvascular disease

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Urm hate to say it but the reason it works on a man is because it makes more blood flow around the body which then helps his issues. Sildenafil widens all bloods vessels they arnt that clever to target vasodilator to each part of the body so it makes perfect sense it would work on raynauds too. Iloprsot is designed for Pulmary hypotension yet is a total lifeline for many raynauds patients. The day they can make a vasodilator that targets just the hands and feet I will be extactic! Ok almost there with the Botox injections but doesn't work on all people. So although sildenafil is mainly known for helping men its effects can be used to help people with different issues.

The moral of the story don't disregard a drug because of what is said on the label - without trying you will never know. my rheumatologist gave me full education on the importance of avoiding certain over the counter medicines - I'm hopeful that other people's rheumatologist have also given them advice too.

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Lets's not dismiss what the OT is saying. To a few, these medications never worked or turned out to be disastrous. Maybe, the underlying pathology could be different and responses to medications are highly individual., hence the advent of self-tailored method powered by genetics. If these orthodox drugs never helped certain people, they should be entitled to other avenues and even look into the vessels to get to the bottom of what's happening.

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viagra is a targeted drug full stop no ifs no buts! mono nitrates are the general slow release, di nitrates are one of the best around for this but are expencive and they start bombs, tri nitrates are the quick acting drugs, heart patients know it as GTN. Guess what viagra is cheap, one born every min. stop reading the bull about primary and secondary on the make it upsite. PS. raynauds and sclorodermia are totally yes totaly different diseases and are not related A h a mad man .... read the reports for your selves andread up about viagra and how it works

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Sorry, do you actually think your posts are helping me and my original question? Because, really they’re not! I’m really not sure if you’re trying to educate me or patronise me to be honest.

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He's probably on pot. His previous post suggests that. What a waste. He did offer some useful insights before. His recent posts are incoherent.

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Because drugs are not always the answer nor do they work the same on every person. No one can answer ur question. They are trying to give you other healthier suggestions that MAY work or may not.🙃

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Littleleni, I absolutely agree with you, lots of the responses are offering great advice for which I am very grateful for, but...

“so your taking a directed drug to make a man errect and you expect it to work on your hands” comment I did not feel was offering any constructive advice, Instead I was made to feel like an idiot! I’m newly diagnosed with Systemic Sclerosis and trying to get my head around it all.

I’m beginning to learn that drugs are not always the answer.

xMx

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I feel that I tend to agree with kel, who posted previously when he was coherent that R is separate. It needs its own investigation. The current guideline might/may well be old. If things worked out, for example, under Pro D, that's useful, but others are still suffering AND that's not good. I also notice they give you these meds one by one. Nobody knows if they work or not. They don't know the cause/underlying disease process. Just some guesswork, not a holistic view. If these mainstream treatments worked, you are lucky. But there are others who haven't. I also feel that it could be partly drug side effects if you are on some strong rheumatic drugs. It's always a possibility. Kel, I hope you didn't mind me saying what I said. You are clearly an intelligent man. I don't know if you are going through some tough time as many of us do. Take care of yourself.

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at the moment yes, im in majorca and have spent two days in bed with the spanish trots! but leaving that aside, how many on here know that raynauds is the closing of their micro vessels, they go into what is called microvascular spasms, inother words they stop blood flow and nutriants further down stream.

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couple this with taking over the counter drugs like night nurse and the condition gets worse. sorry imnoton designer drugers of any distinction, guess what they are vascular constrictors, in other words they close micro vessels so yes l am trying to educate. but dont trust me! research these things for yourself but not sally smiths page on raynauds

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Hi missy moo 😊🌸🌿🦋

I’m so sorry 😐 you are suffering dear.

Blood pressure meds are used to dilate the blood vessels and improve blood flow.

Regarding the reply about viagra...it originally was intended for use in heart patients then discovered during the drug trials phase that it produced the male enhancement side effects and the drug manufacturer produced it for that purpose instead.

I was 12 when I learned I had Raynauds Phenomenon. The only thing suggested back then was aspirin for thinning the blood. However being a minor aspirin was not advisable.

The blood pressure meds keeping body core warm using gloves with cold exposures and using warm water to pink up my bloodless hands have all helped with mine. I sure hope you get relief soon. 🌸🌺🌸

😊🌸 🤗💕😘

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