night owl

Hi I have a vein road map mainly across my chest and I have been diagnosed with Livedo Reticularis. My journey with scleroderma started when I was in my early teens and I am now into my fifties. I can be light hearted and say my vein map its like a motorway system which has nothing on me but people’s comments who don’t understand can be very difficult even at my age. How does your daughter cope with everything? Night Owl

Just out of interest does growing older have any impact on the frequency digital of ulcers? The older I get the less I seem to have. Is this an age thing?

Planted the beans for this year in pots, outside in March in the warm but no sign as yet they are going to grow. Is this going to be a year without runner beans?

Hi It has been my choice to take ibuprofen as I find it very beneficial for joint pain, never been told not to take it but as I already had the strictures in the oesophagous, heart burn and swallowing problems before I started it, which might make a difference. My Rheumatologist put me on a PPI (proton pump inhibitor) to help improve the oesophogeal problems. The balance between the medication has been fine for me so far. Night Owl

I got to the last vial and then things began to stop. I don't think I need to say anymore. My general practitioner has asked to see me (unusual) following the tests, again more In trepidation. Night Owl

Hi I have free prescriptions because of an under active thyroid, an auto immune condition. You could say it's one of the best benefits from having Scleroderma. It's saved pounds over the years. Apply for your free prescriptions; you will not regret it. Night Owl

Hi Liz I have never been offered this for dry eyes - just false tears which applied often and are okay but are tedious . Do the puncual plugs help? Night Owl

Dear Louise It must be difficult for you with your daughter at 19 and for her also. Does she post as well? Night Owl

Hi everyone, It's the prodded around with the needle which is always a bad sign. Going to see the phlebotomist tomorrow and my list of blood tests has grown as it’s the Rheumatologist ones plus the General Practitioner ones; I reckon that must be five vials. I hope my veins will oblige - such a simple thing for most people becomes such just a major thing! In trepidation for tomorrow; not a big fan of needles. Night Owl

Wisdom teeth are good; it's a few more teeth to be able to chew on. Have a happy holiday. Night Owl

Hi Christine Have you parted company with that troublesome tooth? Did everything work out okay for you? Hi Jefa Your post was good and your experience is better than some advice given by dentists. Night Owl

I had my usual appointment with the Rheumatologist and then my veins said I am not giving you any blood. Somebody tried to do the usual blood tests after a consultation. The carer had drawn blood successfully on more than one occasion. The tourniquet was applied, on both attempts, prodding for the vein happened, oh yes you have something there but oh no. It did not go well; no blood was to be seen until the needle had been withdrawn. No bruise. I like to think my veins saw the needle that was heeded their way and then they said no! They must have been punctured. There was no third attempt. There is no phlebotomist as part of the clinic and on experience they are more successful in getting veins to oblige. In the past the Medical Staff have been asked to take blood when my veins have said no but it was from the back of my hand - ouch! I am going to the general practitioner’s for my bloods this time so I hope my veins say yes. How many attempts do you have to have for routine blood tests?

Veg and bugs just seem to go together. I'm going try beans again this year and hope - no holes in the leaves this time. I am still keeping garlic and washing up liquid in reserve. I'm going to plant Marigolds though.

Hi That is a move Bristol to West Yorkshire. From previous posts yes, I have had Iloprost many times and the years do blur into one. I think you are right; I have had this for more years than I have not and I was asked recently how it affects me. I found it difficult to answer as I know my limitations and how to cope but I cannot remember a time when I did not have them. I have no comparison from the norm to make anymore. I have been treated at many different centres over the years and it is difficult to change where you are treated but you always have the option to be referred elsewhere. It's like taking a first step ................. Night Owl

Hi Iloprost is a life line for me at times and I find it helps a lot. Yes there are side effects but I have learnt the best way they can be managed for me. My 'cocktail' is pain medication phosphate and paracetamol for the headaches and ondansetron for the sickness all prescribed by the medics. Where I am treated I go home after treatment with my cannula in place, ready for the next day. I have five days of treatment at a time. When I way up the pros and cons of the treatment iloprost always seems to win. I have not been able to get on with Prozac even though I have tried it more than once. Prozac goes had and hand with insomnia even when I have tried taking it a different times of the day. I am sure there will be others who have had treatment for the side effects of iloprost. Only you can decide like a Shakespeare quote to be or not to be or in this case to have or to have not. Night Owl