Do you get Raynaud's in your hands without any change in color of your fingers from pink to white or blue?
The palms of my hands turn white when they get cold but the fingers don't change color. The skin of my finger tips becomes hard and my hands become numb and painful.
Could that be Raynaud's and can you get it like that too?
Hi Dacharya, yes you can. My mother who is from Uganda doesn't have the colour change but both the palms and fingertips go white. It's not as easy to identify (but you have to think about the fact that usually these areas are pink). You might also notice the nailbeds looking greyish instead of pink. She had to see the Rheumatologist and there was a delayed diagnosis for the same reason (people expecting to see the three colours). However it was confirmed when the fingers got ischaemic. The other symptoms were tingling which can become increasingly painful (if left unchecked it can lead to nerve damage so do insist on getting a referral as this is sounding very similar to my mum. A course of iloprost every October has really helped - if she gets that before the cold snap kicks in, it gets her through winter.
Thank you very much for all the information. Good to hear that iloprost is helping you mum. But what are the side effects you mum gets after taking this drug?
With Iloprost, as it's given in the UK as an outpatient drip you do need to be monitored. My mum was very lucky to get almost no side effects at all though she does seem to be in the minority, based on this forum!The main one I've heard of is nausea and headaches while getting the drug infused. Mum's nausea was very mild but it did mean no appetite while on the drip (so not eating until getting home in the evening). There are some things they can give for the nausea but I think it has to be agreed by the doctors. Lots of others can give more on this. Mum only actually vomited once on the drip when they gave her a lot at once to finish the dose. She didn't get this when they incremented the dose slowly - they have to deliver x mls into the system so if they blast you last minute you will definitely be sick !!! So I think the side effects can be managed, but seem to vary from person to person, no way of knowing if you are lucky like my mum or not. Having a bag of plain walkers crisps and water is a good idea :-). For mum it's 0800am-2pm for 5 days, I expect you'd have worse side effects if more were given for less days, though you could be given anti-nausea drugs and other meds. The other side effect if you have any nerve damage from your Raynauds is tingling, which is inevitable as the nerves are awakened as they begin to repair during treatment. That happened to mum after she got iloprost after the worst initial Raynaud's attack and that tended to be worse at night, but she just used paracetamol and given she couldn't use her hands properly before the iloprost this was still the better evil. Now she can go without gloves indoors with the heating on which wasn't an option before, albeit turned up very high.
That was quite a struggle for the Raynaud's. I guess heating is the best solution. BTW, why your mum was directly put on illopost? I heard that some had taken pills like amlodipine and got some relief with almost no side-effects.
I think it depends on the severity of the Raynauds. Some people are on 2 x a year infusions with Iloprost. Mum was initially given Iloprost as an emergency measure as her fingers went ischaemic (severe Raynaud's is much like frostbite - you can lose fingertips). Kind of the opposite almost re drugs - her Raynauds has always been there, but the heart drugs she was given triggered a severe attack and continue to make the Raynauds a challenge. There is a new drug she is on which makes her Raynauds slightly better (Dilitiazem). As far as her Raynauds meeting the condition for iloprost apart from her fingertips going black at the ends(!), testing later showed she likely had secondary Raynauds (The ANA test) but not sure that alone would have done it. Interestingly, that same year she saw Rheumatology in summer and they weren't sure she had it at that point but of course it wouldn't be visible then! It seems with heart conditions, the drugs literally save your life but the downside is juggling all the side effects and as it varies it's a question of finding what's right for you. Anything she takes has to be agreed with both the cardiologist and rheumatologist now 
Yes, right. So, iloprost cured the finger tips of your mum? Are the fingertips back to normal now? Does your mum get numbness now?
Yes it did reverse the ischaemia in her fingers. She does still get numbness and tingling in cold weather (so now!). She takes a paracetamol most evenings but nothing stronger, we still have to have the heating on all the time. So not a 100% cure but huge difference from having to wear gloves indoors and not being able to grip. She gets the iloprost in October, now is probably the hardest time when if starts to wear off as we wait for it to get warmer. In Norwich luckily not in the North of England but still
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