Scleroderma & Raynaud's UK (SRUK)
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Secondary Raynauds

Does anyone here have Secondary Raynauds? The more severe case of typical Raynauds? My husband was diagnosed at the beginning of May after spending 8 days in the hospital, 4 of which he was in a medically induced coma in ICU after collapsing from chest pains and trouble breathing. In those 8 days doctors could not understand what was happening. Every test came back fine but yet he was still having problems. He was touch and go for a while. On the 8th day he was in there, the doc had diagnosed him with Raynauds Phenomenon, but the Secondary type. This affects his blood vessels and arteries to his heart/lungs and brain. Caffeine is the biggest trigger. He has been unable to work since then and is on a ton of medicine. If he skips a pill hes in for trouble. He starts slurring his words, he can barely walk at times and has chest pains. Although chest pains can come out of no where. And stress is a big trigger. Not to mention the COLD! HOW does everyone deal with the cold. ? Air conditioning is terrible for my husband. He has a bad attack when its too much air. He starts shaking, slurred speech, cant walk, chest pains and weakness. We have to get him in warm air ASAP and his meds! Any help or advice or help would be appreciated!

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Hi Hendryx826 😊🌸🌿

I’m so very sorry to hear about your husbands complications from his secondary Raynauds Phenomenon.

I’m across the pond in the USA 🇺🇸 and both my dad and I have it. My father’s is like your husbands mine is combined with Inherited Erythromelalgia. My dad hates doctors and won’t go for treatment for his despite my trying to tell him the dangers of not doing so.

Here in the USA there is a world renowned clinic that is known for excellence in care. I previewed the following site and read about the condition. If you go to

mayoclinic.org and click on diseases then R then click on Raynauds Phenomenon reader view available at the top it will help eliminate all the ads etc. that make it harder to navigate. Just click on reader view each time and you should be able to read it like a book. Again I’m so sorry that you both are going through this and I just prayed for help to resolve this crisis.

Take care and bless you both.

EJ 😊🌸🌿🦋🤗💗😘🙏

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Thank you for prayers. We are in USA as well.

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You’re so welcome and nice to meet you. Pray all goes well.

Lots of hugs and love and support sent your way.

EJ 😊🌸🌿🦋🤗💗😘

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Hello hendry, so sorry to hear that your husband is having such a rotten time, hopefully now that he has been diagnosed, they will be able to determine which medication works the best for him. Has he been offered Iloprost infusion yet? Whereabouts in the country are you, and is he under the care of a specialist team?

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Hi! The meds hes on right now seem to be doing ok for him. Its just so many he hates taking them. We are un USA. And he only currently sees one doctor and no he has no infusion

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Secondary Raynauds doesn’t actually mean that it’s worse than primary raynauds; it means that it is secondary to another condition. His doctors should be trying to work out what the primary condition is. Good luck x

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Hi,

Secondary raynauds is due to an underlying condition such as scleroderma or lupus. It sounds as if he needs further testing to establish if this is the case. Secondary raynauds does not occur by itself. Good luck!

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Please please please get your gp to send your husband to see a cardiologist or vascular specialist and to stop dealing with in the in the past doctors. every modern doctor knows that raynauds is a form of microvascular disease andas alread said secondary just means that a primary disease set it off

l have microvascular disease with Cadiovascular or coronary artery spasms and raynauds again the in the past doctor calls it syndrome x, prinzemetal or a variant angina

my hands change colour canstantly but l have this whole body! I have been told that everytime l have chest pain l am starting to have a heart attack but luckely for my it stops itself before any damage is done but sometimes it doesnt stop soon enough?

Yes it is set off by triggers, mine are sudden change in anything and just because it wants to. l am ok with the cold as long as it comes on slowly, too quick and it starts mehaving a heart attack

So please please please look in a different direction. I live in the west midlands, uk and there are no doctors in a radius of 100miles that have knowdge of this some have heard of it but none know how to deal with it. beta blockers are a no no, so is the cheap viagra pills unless he needs propping up but my guess is he got problems there as well!

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Hi kel, I am under the care of Chapel Allerton hosp in Leeds, under the specialist care of professor Buch and Dr Del Gado and team, maybe worth your while seeing if you can be referred. xx

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Fairy,

I am after a new cardiologist in the know because it is costing us too much to keep travelling to chelsea and the overnight stays in london. the ultra big negative is stopping having Professor peter Collins as my cardiologist. l wouldnt save money traveling to leeds.

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I got diagnosed with syndrome x years ago and told my rheumatologist but bloods were clear at the time, now other thinks are starting to happen and I'm wondering whether to go back and get checked again. Your husband sounds as though he's having a rough time and it can be frightening which will increase his stress levels. Hope you find some answers soon, best of luck x

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What is his primary condition if it's okay to ask this? Thank you. 🍀🌻🌺

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We believe it might havr been his hep c

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