My first treatment with iloprost infusion at the Royal Free Hospital (London)

.On 25th February 2013 I began a weeks treatment with iloprost infusions at the Royal Free hospital in London (PITU wards on the second floor.

I was a bit apprehensive not knowing what the outcome would be but it has been very positive so far. We travelled from our home in Essex the previous evening and booked a room at the nearby Premier Inn as we had to be at the hospital at 8 am the hospital the following day.

On the first day you have swabs taken and a doctor takes a short medical history along with a check on any medications you take. They do ask that you take your medications with you, but just a print out of your prescriptions seems to suffice. That is what I did and no-one asked to see the actual drugs. You are weighed and a cannula is put into your forearm ready for the infusion.

You are hooked up to a drip via this cannula for approximately 6 hours each day. You spend that time on a reclining chair rather than a bed, and are monitored regularly throughout the whole procedure. The staff are really good, kind and considerate. They are dedicated to the PITU WARDS so you don't have an ever changing staff. This way you get to know them all. You are given breakfast and lunch if you want it and a sandwich later if required. You can also unplug the machine and take it with you for visits to the toilet or perhaps just to stretch your legs or get a breath of fresh air. The amount of infusion is based on your weight which meant mine was quite low as I am only just over 6 stone.

Medication to help prevent any unwanted side effects whilst the treatment is being administerd is given at the beginning of treatment each day. Any side effects should go once each days treatment is over. I had none of the headache or nausea that are common during the infusion procedure but I became very drowsy after a little while and spent most of the time dozing or fully asleep. How lucky was I? Having lost so much sleep to EM (and who here hasn't) it was wonderful!!! Not only that, I had my first full nights sleep in months the very first night after treatment.

The ward I was in had 8 chairs. There are a lot more similar wards from what my husband tells me. Although there is a notice on the wall asking visitors not to stay by the chairs due to limited space but to wait in the corridor, the rule was not adhered to and no one was told to go. One lady had 2 relatives spend all day with her. My husband stayed with me the whole time too and the nurses didn't seem to mind at all.

I was the only 'newbie' on my ward. None of the other ladies had EM which was a shame as I had hoped to perhaps meet someone to compare notes with. One had Reynauds, two had Scleroderma, and one didn't know what her condition was called but the iloprost apparently helped. Not everyone had iloprost. One lady had dreadful eczema from head to toe including her eyes. She had two different drugs infused at the same time which didn't seem to agree with her this time round. Made me grateful, almost, for just having my feet and lower legs as a problem. One of the ladies with Scleroderma found that during treatment her whole head hurt. Inside and out, poor woman. Even hurt her to eat anything, but it went away once the infusion stopped. I felt so lucky not to have had any problems with it. Once again proving that everyone is different in their reactions to medications/treatment.

If, at the end of each day, if you have had no problem with your cannula then you are allowed to keep it in if you wish, to save having a new one the next day. Mine was fine and I kept it in for the allowed maximum 3 days. It was just bandaged up securely and was quite comfortable. I had a new cannula on Thursday in the other arm but I have had a problem with the vein there before and it became a bit inflamed and bruised by the end of the day so it had to be removed. Apart from that I had no problems.

Because you are not an in patient you are put up at the Premier Inn which is a 10-15 minute walk away. The hospital bears the cost for this. But beware, the parking charges there are 14 pounds a day for residents and that is down to you. Parking is not easy at the hospital either and also expensive. If there is a next time I shall not bother taking the car, just ask one of my children to take me up the night before and walk or take a taxi down for the rest of the week. My husband was allowed to stay with me for no charge as the room is a double one anyway. There is internet access but, after the first 30 minutes free it will cost you 3 pounds a day and the site is not secure. Our first night there was not quiet as the fire alarm sounded at 2.30a.m and we were all mustered in the lobby while the fire brigade sorted out the problem. A water leak had shorted out some electrics. We were on the top floor and couldn't use the lifts so were given a spare ground floor room to use until the lifts came back into use. I cannot climb that many stairs due to emphysema. The following day the fire alarm went off at the hospital, but it was probably just someone burning the toast again. My son is a firefighter and is frequently called to our local hospital for many such 'emergencies' so I wasn't too bothered anyway. The noise of the alarm went on for ages. Knowing that these things come in threes I was waiting for the next little drama which came on Tuesday when I thought I had left my handbag in the hospital ladies room on the ground floor. Panic stations as I am sure the other women here will understand. It had a happy ending when the taxi driver we had used to go back to the hotel found it on the back seat of his cab and brought it back. He got a very good tip for that. Phew!

Each day was more or less the same. On the Wednesday the nurse asked if I would like to do an extra hour of treatment so as to be able to leave earlier on the Friday. I agreed as I was having no problems with it. It is not uncommon I think to do this as a couple of the other patients did the same.

A couple of volunteer masseuse came round during my time there and you are offered a free massage. I had back and neck massage and very nice it was too.

The nurses never seem to stop working and you are monitored every 20 minutes for the first hour and a half then every hour thereafter. Your BP and SATS and at first your temperature are taken and the dose of infusion goes up in increments until the maximum dose per hour is reached. Mine went up in increments of 0.6m per hour to a maximum of 1.8ml per hour.

The only downside so far is that my legs from knees to ankles became much more swollen than usual resulting in the skin blistering and breaking down in places aven s they did once before when taking Losartan. I have been using burn dressings as before and they are healing nicely. I also found that my breathing, which is poor at the best of times, has become worse since the treatment.

Now for the best bits.

My feet are comfortably warm and they don't hurt. Yes, I can't believe it either. i even gave them a long pleasantly warm soak in salt water my first day home. Very soothing and no after effects or discomfort.

Since that first day I have not had any of the pain that we all know about and describe in so many ways. I do still have some tingling and buzzing which can be quite strong at times. Also some slight itchiness which used to precede flares. If this gets too intrusive I take a couple of paracetamol which calms it down. I feel very tired most of the time but that is probably more to do with my breathing problems that the iloprost.

I am able to wear slippers, albeit flat open toed mules but it so nice to have a buffer between my skin and the hard floor. I do believe my tiny but exquisitely painfyll ulcers are finally beginning to heal.

The first week during treatment I slept very well and didn't need the fan on at all. In fact I must have slept more hours than I was awake for. If it all went horribly wrong from then on it will have been worth it for that alone.

i have not needed the fan since coming home and am sleeping much better without so much need for painkillers. I still take the amitriptyline and occasionally codeine at night as an aid to sleep as the restless legs are a frequent nuisance.

I have had no pain at all since the infusion started and can now sit with my feet up on the footstool and watch a TV programme in comfort without constantly fidgeting or going out during the break to stand on the cold tiles. It is all a real novelty at the moment as I had forgotten what it was like to relax for even a minute. The only relief I had before was the oblivion of drug induced sleep. Now I often doze off in the armchair with no problem whatever. I still have brain fog but that is probably now from too much rather than too little sleep:>).

The skin on my feet is starting to feel better and become less rough now that i can wear slippers again. I aim to get them in the best condition I can before this happy bubble bursts and it all starts up again. I am in no doubt that it will. The main gain is for the pain side of things so the other symptoms will probably reappear with more strength over time. I noticed for the first time yesterday (6th March) that my right foot was noticeably warmer than the left More so than it had been for the last two weeks. It began about early evening and again tonight at around the same time which was usually flare time. So I am under no illusions that he treatment will not be a permanent cure. I am so thankful just to be pain free right now.

Now I will have to wait for my follow up at the clinic to see where I go from here. Wil I be able to have it done again and if so how often will be questions to ask. The lady with Raynauds has it done every 4 months and one of the Scleroderma ladies the same.

I can only tell you how the treatment has worked for me but if any of you good people get the chance to have the treatment wherever you live in the world then I would highly recommend it. I can't say what your outcome would be but relief of any kind can only be a good thing.

3 weeks in and I had a small flare in my right foot on Tuesday 12th March. No real pain but enough to make me seek out the tiled floor.

The restless legs have been a real problem after going to bed which means I have to get up again. So I am back to the early hours before finally going to sleep. I am feeling tired most of the time and it is difficult to concentrate for any length of time. Breathing still very poor but the oedema in my lower legs has settled down. Now that I am able to raise my legs without bringing on a flare it is helping with the swelling. My feet are usually deep pink first thing on rising but by the end of the day sometimes nearly resemble an almost normal colour which is quite noticeable.

Hey Lovely,

I was just about to email you but thought I'd check here to see if you've blogged about your experience before asking how it went (thought it would save you re typing it all).! I am so pleased to see that it has been a positive experience for you. Fingers crossed it will give you enough relief to get you through to your follow up appointment.! What a relief that you saw enough benefits to make all the waiting and travelling worthwhile. Keep me updated on how long the 'no pain' lasts (hopefully it will be a while.) Laura x