Royal Free Hospital

Hi everyone,

I have been referred to the Royal Free Hospital by the GP.I have Raynaud's for 12 years but in the last year I have been experiencing strange things on my hand.

Has anyone been at the Raynaud's Clinic at Royal Free?I am interested any experience. :-)

Many thanks,

Agi

43 Replies

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  • Hi Agi7

    You have been referred to the best place for what your going through. If there's anything serious going on they will find it. They are very thorough in their testing and will also put your mind at ease with whatever follows. I'm a patient myself for raynauds and systemic sclerosis and I have never looked back after being referred there. Great doctors and great nurses.

    Goodluck with your appointment.

  • Hi Cole,

    That's amazing!I am so pleased and haply to hear this.I have seen different GPs and a rheumatologist and I didn't have good experience at all.Especially the rheumatologist consultant.He just ignored everything I said and sent me off with an advice "Go and have a look at the Raynaud's Association website." I was shocked and so disappointed.He didn't request any test at all and my hand is so inflamed and swollen that I am unable to do my job properly.

    You really made my day with this news. :)

    Thank you sooooo much!!!!!!

  • Hi Agi7

    Honestly I know what it's like to be in a position where your drs are of little help and your frustrated and stressed. Then the stress makes things worse. But the Royal Free drs are specialists and you will be getting the best care. They will more than likely put you on meds while your tests are being done. Then when the results are through they will cater your meds to what they find. But they will always make sure you are happy and comfortable with whatever treatment they suggest. Many people travel from far just to get an appointment there because of its specialist centre.

    But I hope that you finally get some answers and the care you've been needing. I will be thinking of you and I'm here anytime.

  • You are so kind,thank you very much! This was exactly my thought that is why I asked the GP to refer me there. I had a feeling I know more about my condition than them. My poor GP was shocked when she saw my hand and called over all the other doctors from the rooms. :) It was bruised everywhere and so swollen, bit disgusting.

    It has been 2 years they prescribe different medications but they don't really now what is going on,just guessing. Sounds like it was the best decision to ask them to send me there.They even didn't know about this clinic! I did a bit of research and found it. When I told my GP she was surprised cos she has never heard about it.

    So nice to know there are other people out there and I can share my feelings, they understand me.

    Thank you again! :)

  • I had the same experience today. .. After having waited for 16weeks the consultant was not interested at all in what I had to say.

  • The raynauds clinic at the royal free is absolutely fantastic, I was sent back and forth to my local rheumatologist for a year or two before being refered to the royal free. For the first time they listened and they really helped me - I am now able to lead a normal life thanks to the treatment they have suggested and supported me with. Before going there I knew I had raynauds but I didn't really understand what it was and because of that I didn't properly know how to help myself ie keeping the whole body warm and gloves before raynauds kicks in and summer gloves had never even crossed my mind! The clinic appointment itself I had tests done etc none of which are horrible it was all really interesting actually.

  • Hi Rp321,

    Thank you for your answer. I am so overwhelmed and happy now. I never actually posted anything before.This is my first time and I receive so many replies, support and kindness. I have Raynaud's for 12 years now and I think I cope very well but things have changed in my body and I don't know what is happening! So do you wear summer gloves??I have never heard about such a thing.Is there a website where I could have a look at it? I thought I know a lot but there is always something new to learn,isn't it? :)

  • I wish there was a website that sold summery looking gloves ! I just buy the most summery looking winter ones so I have bright orange winter ones and some white ones. In the winter I wear a medium thickness glove under my ski mittens and as it gets warmer I shed the layers of gloves. I learnt that it's the temperature change that causes the raynauds too so even when it's like 25 degrees I still wear light gloves to stop any breeze or anything from getting to my hands.

  • Can you imagine?Lovely flower pattern, colourful ones..Cheerful and pretty.I hate doing shopping during the summer cos the temperature is okay outside and you go inside and OMG!I cannot cope with that changes at all.

    I only don't feel my Raynaud's when I go home during the summer cos it is 40+ degrees.Feel like I am in heaven. :) 11pm and still can wear shorts.Miss the old days.

  • I save a fortune in the summer as I can't bear the air con in shops. I stand outside and put on extra layers to go in and then need to take them off when I get out - it's so much of a faf I can't be bothered so just don't go in unless truely needed.

    I have searched so much for some where that sells summer gloves it's such a gap in the market if raynauds is as common as they say it is!

  • This is all good to hear as I have my first appointment at the Royal Free next week, after 3 years of similar poor experiences of other consultants, all of whom were actually kind and well meaning but didn't have enough specialist knowledge to help me

  • You are so right.Gives you a piece of mind, doesn't it? :) Please come and tell us how was your appointment. I will think of you, which day is it?

  • Hi, how was your appointment?

  • Hi Agi7

    Good to hear your experiences. You are in the best possible hands at the Royal Free. Prof Denton and his expert team have looked after me since 2005 with diffuse SSc. He is world renowned in his work with systemic sclerosis and raynauds. All members of his team are dedicated and have expert knowledge of their field. They are extremely thorough and although the disease can be alarming, they give such reassurance you can only feel better to be in their care. I used to see a rheumatologist locally, but he said that he never saw people with scleroderma so knew nothing about it, his suggestion for dealing with digital ulcers was "don't get them". Anyone who suffers with these will tell you we go to extreme lengths to avoid getting ulcers! I know that there are centres of excellence around the UK and there are some folk who get great care, I was just unlucky with mine. I was the only patient ever having iloprost infusions there and they had to refer to the RF in order to administer it, not their fault at all, but indicative of how rare this thing is.

    I regard myself as extremely lucky to be in the care of the RF, others on this site have rightly said people travel from the other end of the country to be seen so you are truly fortunate to be in the system. They are particularly interested in 'unusual' aspects or courses of the disease and I fit that category. They continually run research programmes so get involved if you feel you can, it helps us all.

    Good luck and I hope everyone is beginning to feel a bit better with the warm spring weather, carry on avoiding those chill cabinets and shops with ridiculously freezing AC!!!

    Linda

  • Hi Linda,

    Thank you for your answer. :) I have Raynaud's for 12 years now and I think I manage it very well. However, strange things keep happening. I lost weight and I am unable to put it back, I have fatigue, sometimes I sleep 14 hours cos I cannot get up, sleep through the alarm (I used to wake up naturally at 6 am and always been very active), bruised, swollen, stiff fingers all the time, excessive sweating. They wanted to treat me with menopause cos of the sweating (I was 26) but I refused!

    Honestly, I felt like a lab rabbit, they didn't really know what is going on, they put me on different medication all the time which never helped. The rheumatologist wants me to have Ilioprost treatment but I am worried cos every single medication which I have tried (mainly vasodilator) gave me terrible headache, the best was the GTN patch cos I could just take it off and I knew the headache will be gone in 30-60 mins but the tablets are different. Happened often I had to call work cos I was unable to leave the bed due to the headache. Have you had the Ilioprost treatment in the end?

    This is how I ended up at RF. I did some research and found the Raynaud's clinic hoping the people there know what they do. I remember when I told my GP she was so surprised cos she has never heard about this place.I work in a local surgery and nobody knew it either. Sadly indicate how much GPs are uninformed. I am thinking to ask my manager to put some leaflet out at work.

    Well the weather the only thing which I cannot use to it here. I miss the 40 degrees from my country. :)

    Agi

  • Hi Agi7

    I'm having my 3rd dose of Iloprost treatment in May at the RF and they can adjust the dose depending on how you tolerate it and the aches. I usually have the highest dose possible just to get it over with and go home. But I prefer having done at the RF because you are surrounded by other people having the same treatment and you end up talking to people. Plus the RF knows how to properly monitor the doses. But when you go to your appointment ask them as many questions as you need to feel comfortable. I usually write them down cos my memory is crap after chemo treatment. But Iloprost isn't for everyone but you and the RF will work it out.

    Goodluck and honestly don't worry you will be in great hands.

  • I am so sorry to hear about your chemo!How are you now??

  • Hi Agi good to hear back from you. I'm sorry to hear that you've had a tough time. I was diagnosed in 2005 with severe reynauds attacks and was referred to the Royal Free where I tested positive for SSc. I also have sjogren's syndrome with dry eyes. Fatigue with both of these diseases can catch you unawares and can be difficult. I'm still working part time (I'm quite a bit older than you at 58) and I look after my 16 month old grandson 2 days a week. The fatigue can hit at any time and when it does it's difficult, it just makes you want to lie down on the spot (rarely possible!) It seems to go in cycles and is much worse in the winter when our bodies are having to work harder to keep warm.

    I have tried lots of vasoldilators in tablet form (such as nifedipine) but like you can't take the headaches. I have iloprost infusions 3 times a year at the Royal Free. The side effects are not pleasant (headaches and sickness) but in a hospital environment and with pain relief and anti sickness meds it is tolerable. My circulation is better (particularly in my legs) and the digital ulcers are easier to manage. The benefit seems to increase with each treatment so I can only assume that the continuity helps.

    Like you I lost weight suddenly and did not put the weight back. I had a sudden menopause at 47 (the sweats were confusing!) partly I'm sure due to the sudden onset of the disease and the weight loss. Times of stress increase the symptoms of raynauds without a doubt, and the immune system seems to go a bit bonkers so the scleroderma flares too. My very unpredictable and volatile husband contributed massively to these difficult health flares, but these worries are now over and I have a quieter and more settled life. Avoiding stress (hard I know) is so important for your immune system.

    Keep talking on here it helps everyone to hear each other's experiences and we can learn from each other.

    Linda

  • I agree with the other posts - I've been going to RFH since 2008 and have been looked after really well. A routine CT scan showed up a possible thyroid problem which was successfully dealt with at my local hospital but without their involvement I could have had a serious problem ignored.

  • Hi Noni,

    Thank you for your message.That is very interesting. Did your BT show anything about your thyroid problem?

    Agi

  • luckily a benign cyst which was aspirated on examination and an ultrasound which confirmed no problems

  • I am glad to hear that. :)

  • I have Scleroderma, Raynauds and Pulmonary Hypertension! I am under the care of the RF for the PH they are an amazing group of people, and the care is second to none. I travel from Somerset, but it's well worth it. And at the end of it I certainly feel better than I did. Which I am sure you will. Good Luck.

  • Hi Jayne,

    Thank you for your answer. I feel so relaxed now, knowing I will be very well looked after. So grateful for everyone who messaged me here. I have never expected it. This is my first post and so nice to see that people are supportive and helpful here! :)

  • Hi there, I have been going there yearly, they are brilliant. They took lots of blood samples and identified the specific antibodies related to my raynauds. I have limited systemic sclerosis and am doing ok. I know it may be scary at first but personally it was only a very positive experience going there. They also do a lot of research into the conditions too. Wishing you well.

    Debbie

  • Hi Debbie,

    Thank you so much!Honestly, I feel so relieved and relaxed now. All of you are so wonderful for taking time and message me back. Really made my day and very excited about my appointment! :) I will have a look at those researches. Have you ever participated?

    Agi

  • No I don't think i was a suitable candidate but they are one of the specialists research hospital in the country and they have annual conferences with specialists in autoimmune conditions, that you can attend. I haven't been to one as it always seems to clash with something I am doing. I'm sure it would be very informative though.

    Once again, good luck and let us know how you got on. Debbie

  • That is very interested,I will ask about all the research and conference,too.I have learnt so much in day from you all here.Thank you! :)

    I will definitely let you know. I am very excited now,can't wait to have my appointment!

  • Hi Agi

    We are all here to help each other you are not alone.

    All the very best.

    Debbie

  • Hi Agi again

    I have just remembered the annual conference is organised by the SRUK but they very often have speakers attend from the Royal Free or some other specialist hospital in the U.K. Sorry I got mixed up. I am sure the Royal Free will have some info on it though. If I remember rightly they have a similar thing called a family day along the same lines.

    Debbie

  • I have been an in-patient and out-patient at the Royal Free for over 20 years. I have Raynauds and Scleroderma. You have been referred to a top hospital with huge knowledge of these conditions, where research into them is carried out on an ongoing basis, where the terrific doctors put you at your ease and explain everything in laymans' terms, and where there are specialist nurses also, who are so, so kind. There is also a helpline for people with Raynauds and Scleroderma, which means there is always someone to listen out for you.

    Clinic appointments are absolutely nothing to worry about; you are in terrific hands.

    Good luck!

  • Hi Rosella,

    I can't thank you enough for everyone here who took time and messaged me. I feel so relaxed, first time in months I will go to bed calm and not worry about anything. :)

    I was waiting for my appointment over 4 months at my local hospital. I hope I will get something earlier cos I am too excited now. :)

  • Let us all know how you get on!

  • I am another of those who travelled to the other end of the country to be seen at the RF. I can not speak highly enough of everyone I saw that day. My capillary test etc done same day, bloods and a thorough consultantion. Such a relief and very grateful. Very best of luck. Lou.

  • Hi Lou,

    That is such a great news!Last time when I saw a rheumatologist, he only looked at my hand briefly, didn't request any test at all and send me home saying "See you in 6 months". Shocking but here everyone is so nice and you all really made my day. Thank you!

  • I would like to say, Agi7, that I feel very lucky to be looked after the Royal Free Hospital. I was diagnosed with Raynauds and Scleroderma and have been attending the Royal Free for 19 years. I was originally diagnosed at another London hospital where they didn't know much, and like you, I asked to be referred to the Royal Free, like you. Like Jayne O, I also have pulmonary hypertension, and have cared for so well by the doctors and nurses in that dept. As everyone has said, it is a specialist centre, so you have done just the right thing to ask to be referred there.

  • Hi,

    Thank you! :) Everyone is nice to me here. I am so pleased and grateful for you all.I haven't actually received an appointment letter yet but I cannot wait!! :)

  • Agi7, the Royal Free is absolutely the best place you can be. They are quite simply wonderful!!!

  • Thank you.I am so pleased. 😊

  • Aggie, looks like you've had enough recommendations already but I will second the overall opinion - I quickly found my way to RFH once I was diagnosed with Raynauds and limited systemic sclerosis. They certainly put my mind (which was racing badly then) at ease there. Make sure you prepare well for the Appointment - questions, observations, etc. They do spend a lot of time on that initial consultation! And check out the SRUK.org website - lots of valuable info - they have recording on YouTube for their annual conference as well - I literally ran into the conference blind only 2 weeks after I was diagnosed...was a really great use of my time

  • Hi Tanya,

    Thank you for your message. I am very excited and cannot wait to go.I have started to write a list (as you recommended) and have been taking pictures,too.

    Now,I just need to be patient and wait for being contacted. :)

  • I also suffer from Scleroderma and was diagnosed in 2000 , I get my treatment at the Bath rheumatologist hospital under the care of Professor McHugh. The staff here are amazing and extremely kind. I can phone anytime I need advice. Any major tests are carried out at the main Bath hospital in fact I had an MRI scan this week there. It's a long way from home for me, 160 mile round trip but I realised a long time ago that with an illness like this you need a specialist centre. Just wanted to make the point that good as the EGG are there are other options.

  • Hi guys,I am on my way to Royal Free Hospital,finger cross. :-)

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