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Joining the ranks of the Royal Free....


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#1 KeiKei

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Posted 20 December 2011 - 11:57 AM

Seasonal greetings to all and a bah-humbug! The holidays have yet again snuck up on me without any warning. It's ninja prowess improves each year!

Things have been ticking along, and I've not visited here in a while, as life has gotten in the way.

I have been to my London dinner and theatre trip, where I sat in a very warm, very crowded corridor and watched my hands turn all sorts of pretty blue and white. I met some very nice doctors and nurses who asked me to confirm my name and age several times to looks of disbelief (I do look a lot younger than 30 and am still ID'd when buying alcohol). We broke an elevator, then played chase the cousin round the rabbit warren that is the Royal Free looking for toilets/pharmacy/working elevators. My cousin has refused all future dinner and theatre dates.

I have come away with a goodie bag full of tabletie goodness. Browsing through a couple of posts ref Vit D or lack of (which I have... lack of Vit D that is) and an off the cuff remark from Amanda about no sun when on MMF was a bit of an eye opener, as I'm due to start a course of MMF next year (I am so not taking them over the holiday period as there's weekly visits to the vampires, and I wouldn't want to spoil their holidays pin pricking me looking for a vein that hasn't dried out) and wasn't aware of that titbit. I've other's to take but I forget how they're spelt.

I've also changed meds from Lansoprazole to Rabeprazole, as the Lansoprazole seemed to have stopped working.

There's talk of hooking me up to an IV for 6 hours a day over 5 days to administer illoprost (I think??). I just hope they have xbox or something if they decide it's the way to go.

So, new years resolution... take more drugs! No wait, I'm sure that's not right...


"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#2 Joelf

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Posted 20 December 2011 - 03:39 PM

Hi KeiKei,

Well, I'm glad to hear that your London Dinner and Theatre trip visit to The Royal Free was productive and that they've reviewed the medication that you're taking.

I've included a link on Vitamin D deficiency and also a couple of links to Mycophenolate Mofetil (MMF) and Iloprost which I hope will give you some more information and that you'll find interesting. Sometimes the immune suppressants such as MMF do react with the sun; I'm taking Azathioprine (another immune suppressant) and was given the same warning about the sunlight on my skin whilst taking it; I have to concentrate on looking pale and interesting instead!! ;) Unfortunately that won't help your Vitamin D deficiency!

Aren't you lucky to be taken for younger than your actual age?! I got into an exhibition a few weeks ago as a "Senior"; I didn't know whether to be pleased that I managed to get in a bit cheaper or mortified that I looked old enough to be able to!!! ;) :unsure:

Kind regards,

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#3 rubydoo

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Posted 20 December 2011 - 04:34 PM

Hi Kei Kei
why don't you ask your specialist if you can have the iloprost infusion. I have had 7 infusions, each over 24 hours - the last one. being yesterday. My fingers are the best they have been for over 2 years and the digital ulcers have practically disappeared. My consultant says that I can get enough of the iloprost over the continous 24 hour period to make it effective- it has been very effective for me and means I don't have spend 5 tedious days in hospital
hope it works as well for you as it has for me
regards
Helen

#4 lizzie

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Posted 21 December 2011 - 09:03 AM

Hi Kei Kei, I am in fact just sat having my 3rd day of Iloprost infusion as I write- given 8.30 am-6pm for 5 days in the unit I attend. It is very very very tedious-but ultimately worthwhile.
Lizzie

#5 Amanda Thorpe

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Posted 21 December 2011 - 09:53 AM

Hello KeiKei

How marvellous that you have been able to attend a centre of excellence for scleroderma and be seen by some of the country's leading experts! As we all know so many people in so many countries would swap their experience for yours in a heartbeat as many people can't afford or live too far away from their scleroderma experts and here you are, able to hop a train or two to access a centre of excellence.

Today I received the December newsletter for the Scleroderma Unit at the Royal Free, reading through it and your post reminded me what a priviledged bunny I am to be a patient there as well so I would like to say:

:happy-day: Happy Holidays to the doctors, nurses, porters and staff at the Royal Free!!! :happy-day:

Take care.
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#6 Joelf

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Posted 21 December 2011 - 10:42 AM

Hear Hear, Amanda....I'll join in with you!!

:happy-day: Happy Holidays to all at The Royal Free.......( ;) and also The Royal Brompton!!!) :happy-day:

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#7 KeiKei

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Posted 22 December 2011 - 05:20 AM

Add my voice to the praise and seasonal greetings.

Thanks for the links Jo, I've been reading avidly. I put my young-ish appearance down to my partial Chinese heritage. My cousin says it's because I dress and act like a child. *pout* Do not! Why do I drag her along!?!
I've always been of a pale complexion, but the skin involvement means I am turning "yellow" and my face looks like I'm on a constant drinking binge. Thankfully, now the affair with the toilet has ceased, my ruddy complexion has started to look less ruddy.

Helen, Lizzie thanks for the encouragement. I don't have digital ulcers, just permanently colour changing hands, so I'm unsure if I'm actually being booked in for an infusion as I may not be considered bad enough? Sounds like I'm brewing a pot of exotic tea. "An infusion of spices, fruits and flowers lend this tea a sweet, rich, flavourful taste and aroma..." I got the impression that the infusion is not pleasant the first few days, so think I may stock up on books and ease myself into the routine, if that's the route they're going to take. Not sure I could handle 24 hrs of being hooked up. I really can't sit still.

I am glad I went to see the specialists, as rather depressingly, my local Rheumatology department told me they couldn't really do anything for me as they didn't have the expertise. I am not knocking my local, they have been amazingly quick at diagnosing me and running me through the gauntlet, and I didn't have to mention the Royal Free, they volunteered to refer me.

Am eyeing up the gazillions of boxes of chocolates and biscuits sat as far away from my collegues as they can possibly put them, and as close to me as they can without cluttering my desk. There's only 5 of us in the office. *sigh* I'm just going to have to martyr myself and eat all the nasty calories for them :P A perk to SSc!!!

"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#8 lizzie

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Posted 23 December 2011 - 08:11 AM

Hi again Kei Kei, re the Iloprost infusions- I don't have digital ulcers either - just the peksy Raynauds. Think the idea of the Iloprost is to stop any ulcers developing. I am also a pretty restless, ants in my pants, type ,but being hooked up is not too bad as you can still walk around. Me and my drip stand have covered several miles of hospital corridor.
Lizzie

#9 suze932

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Posted 18 February 2012 - 08:43 AM

Hi,

The first two months of this year will be memorable in terms of hospital appointments and procedures, including the normal tests, of course. I have had calcinosis removed from two fingers (painful but appears to be healing fairly well and circulation not bad to fingertips), laser endoscopy to cauterise bleeding telangectasias (water melon stomach) in my stomach, with a repeat due next month and on Monday I hit the Royal Free for 5 days Iloprost infusions!


Any advice/info on what to expect from the Iloprost experience from seasoned Sclerodermians would be appreciated. I have already packed my earplugs, knitting and Kindle! What a fun disease this is - never time to get bored with only one symptom! Warm wishes.

#10 Joelf

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Posted 18 February 2012 - 09:45 AM

Hi Sue,

I'm sorry to hear that you've had to undergo calcinosis removal and laser endoscopy; it sounds as though you've been having a very busy time with hospital appointments!

I've never had Iloprost infusions, so can't advise you about them from my own experience although I'm sure some of our other members will be able to give you some first hand advice. Here's a link to a very helpful thread about Iloprost infusions, which I hope will give you some more information.

I'll be thinking of you on Monday and hoping that all goes well for you.

:emoticons-group-hug:

Best wishes,

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#11 Amanda Thorpe

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Posted 18 February 2012 - 01:38 PM

Hello Suze

I have only been an inpatient at the Royal Free for Iloprost once (my Raynaud's is mild) I had it over 5 days and would never have it again. Mind you that was back in 2007 and from what I understand people find it much better with longer infusions, mine were over 6 hours each day and I understand the infusions are now over a longer time frame which would help lessen side effects. If you get any make sure you speak up, watch out for sickness, headaches and muscle cramps!

Earplugs are a good call, I don't know what type you have but as a seasoned earplug user I can say the silcone ones are best, they last longer and block out more noise than the wax ones. They'll probably be your best friend because if you don't feel well from the Iloprost stick them in and snooze!

Do let us know how you get on and take care.
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#12 suze932

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Posted 19 February 2012 - 01:02 PM

Hello Amanda,

Thanks for your advice, will definitely reward myself in some way at the end of the week! I will look out for those pesky side-effects as my blood pressure is usually low anyway, so will mention this before I'm plugged in.


As always, the support on the forum is very welcome. Will post when I'm finished with being stuck with needles!

Sue

#13 Amanda Thorpe

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Posted 19 February 2012 - 01:17 PM

Good call Sue, watch your blood pressure as it can plummet on Iloprost. The nurses should take it frequently, just make sure they do!

Take care and keep posting.
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#14 Lil Dee

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Posted 20 February 2012 - 08:40 AM

Hi Sue,

Thought I'd give you a pleasant(-ish) report on Iloprost infusions - well, as much as I can, considering I was stuck in hospital for five days !!! I ended up on the Iloprost for 24 hours, for the full 5 days.

I too have low blood pressure (no amount of smoking, drinking and eating of salty food in my early years seems to have had any affect on this !!) so was wary of being plugged into the infusion.

The nurses on the first ward (long story) were very good - as I'm sure will the ladies and gents at the Royal Free - and checked we were trundling along according to schedule, with no ill effects.....except for the requirement to have my blood pressure checked - Which meant very little sleep, as the automated blood pressure check kicked in every 15 minutes :( on the first night.

Apart from an initial headache which was mild, and we eventually figured this was actually caused by the lighting and not the Iloprost. The dosage was increased on a couple of occasions, but I personally never felt any side-effects at all - I know - VERY lucky !!

All in all, my biggest issues were :
1 Inability to wash properly - as I was connected to the infustion 24/7
2 Lack of sleep due to two hourly blood pressure checks
3 My dropping blood pressure when sleeping

The blood pressure drop was the most amusing "issue" as the ward I started out on were used to this sort of thing, and were happy as long as I wasn't feeling dizzy/headachey etc. When I was moved to the main ward, the nurses would visibly panic :wacko: and I even had one call the doctor on call.......

BUT the main reason for this post.....I had no side effects, no headaches, no sickness. Nothing.

However, I am still struggling with my Raynauds. One finger in particular is really struggling to stay anything resembling a healthy colour (blue/purple/white are all favorites !!)

So, please don't think it's all doom and gloom Sue - but do take some good books, plenty of drinks (I drink a lot of fizzy water, so my husband was ferrying in several bottles a day for me!) and maybe some decent biccies to chomp on whilst you're sat there attached to the infustion.

I wish you all the very best, and hope you have as easy a time as I did :balloons:

#15 lizzie

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Posted 20 February 2012 - 01:23 PM

Hi Sue, Having had Iloprost infusions every 3 months for the last 5 years, I consider myself something of an Iloprost pro - think it would be my expert subject on Mastermind!
I,m a bit of wimp , so the fact that I have tolerated it that many times shows that it can't be too bad. For the first 4 years I had it for 24hours a day for 5 days. Thankfully our unit now has started giving it as a day case and I have the infusion from 8am-6pm each day for 5 days and get to go home each evening. The main side effects/problems I have had are :
1. Boredom- I always take loads of things to do ( books, laptop, Ipod, radio, magazines, DVD's) and end up doing nothing for most of the time!.Once the iloprost starts taking effect I develop a strange lethargy , so that I although I am bored can't be bothered with doing anything much. In my estimation the best activities are a) talking to other patients (have spent many a happy hour discusssing scleroderma symptoms) b) Discussing the merits or otherwise of the junior doctors with the nurses c) listening to the radio (I always take mine) as requires no effort and can block out other sounds if required (e.g the occasional overtalkative patient or the snorers)
2. Headache- ranging form dull vague hangover type feeling to full blown migraine. The faster the infusion rate the bigger the headache.
3. Hypotension- and like Lil - particularly at night. makes you feel a bit dizzy and nauseated
4. Weird pain in salivary glands when eating, which them goes off after a few mouthfuls. I had thought this was my own unique side effect , until I met a lady last time I was in who had exactly the same problem
5. Multiple bruises from multiple cannulation-I have the typical rubbish sclero veins, so often takes 4 or 5 attempts to get a cannula in and sometimest they only last a few hours before needing to be replaced. Other times however they last for 3 days. In my experience the nurses are far better at doing the cannulas than the junior doctors .
Good luck with the treatment
Lizzie

#16 Lil Dee

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Posted 21 February 2012 - 03:49 AM

5. Multiple bruises from multiple cannulation-I have the typical rubbish sclero veins, so often takes 4 or 5 attempts to get a cannula in and sometimes they only last a few hours before needing to be replaced. Other times however they last for 3 days. In my experience the nurses are far better at doing the cannulas than the junior doctors .
Good luck with the treatment
Lizzie


Shhhhhhh......I wasn't going to mention this bit, as I was hoping that there might be someone out there who is the exception to the rule !!

I ended up with four cannula sites over five days, with a number of unsuccessful attempts in-between. Lizzie's comment that the nurses are better at doing the cannulation than the doctors is quite correct - they are by FAR the more experienced in this procedure. However, at the Royal Free, I suspect that cannulation is a day to day part of the routine for most of the staff......unlike the general ward I found myself on !

#17 Amanda Thorpe

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Posted 22 February 2012 - 09:58 AM

The Royal Free have a team that puts the cannulas in, well they did in 2007. The guy who put mine in made it totally painless and I had tight skin and no veins to speak of at the time. Maybe ask about this rather than wait and see who turns up on the day to put the cannula in, for sclerodrmians it's a legitimate concern.

Take care.
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