Russian Weather Front

[TJme]

I was horrified this morning when the weather report stated that Russia was suffering from -16 weather , that was until I realised that it was heading our way .

I have started to have my groceries delivered because my hands are so bad ,I cannot hold a bag without my fingers turning black , getting home delivery is a real bonus .I can order as many heavy items as I need to without the worry of not being able to carry it .

The delivery arrived on time , and I went outside to greet the driver and give instructions , and to my horror it started snowing. Don't get me wrong I was well covered up ..I must look like a Russian doll with all the layers of clothing I have on , yet in the two minutes it took for me to talk to the driver I felt my hands getting worse .

When I got back indoors and all the shopping was unpacked .I took off my gloves to be greeted with black and blistered fingers ...ewwwww ! I had an Ilprost infusion over Christmas and the rheumy said that It should see me right for 4 to 6 months ..uh huh ..here we are just five weeks later and my hands are as bad as they were when I was admitted to hospital....I'm taking my lorsatan daily but nothing seems to be helping ..while on the subject .I am confused as to why people talk about Raynauds attacks ...I have seen it mentioned in many questions and blogs and find myself asking the question ..'Am I really suffering from it ? For me it isn't something that comes and goes in ten minute or half hour intervals .It is constant , I haven't been able to feel my hands properly since mid September ...maybe I have something like it but not exactly it ?'

Then I think again and say to myself , there are people a lot worse off than myself out there , stop the moaning and complaining I've got it easy compared to many ...

[Yorky]

I am sure that -30 in the Ukraine was mentioned this morning. My idea of hell on earth. I also have my groceries home delivered, as just trying to lift a 4pt bottle of milk is too much for me. Yes its cold with the door open and when unpacking it, but much better than going to the supermarket and all the lifting on to the conveyor and in and out of the car boot.

I have iloprost every month, from Sept to May, one 6hr blast, but I have to say it doesn't seem to make much difference to me either, but I am told that it works and that I need it.

My hands and feet are also cold most of the time, I probably spend at least half of my waking day with a blue tinge, but I do keep the heating on quite high.

I usually find that a trip to an Rheumatology outpatients appointment makes me realise that there are worse conditions to have.

Keep up with the deliveries.

[zenabb in reply to Yorky]

Just imagine how you would be if you didn't have the Iloprost every month. It works as much as it can.

[TJme in reply to zenabb]

I have only had the ilprost once zenabb .Bit confused as I had 12 hour infusions every day for five days .not 5 or 6 hour infusions ?I suppose that is down to my rhuemy's preference.

[zenabb in reply to TJme]

I am confused. You had all that Iloprost for 12 hour a day for five days so your doctor mut have thought that you needed all that.... and then you were told it will suffice you for several months?

[TJme in reply to zenabb]

He told me that before the infusions were started. I was confused about having to have it for 12 hours a day for five days too , everyone talks about ilprost on this site and I have never heard anyone else say that they have 12 hour infusions ?

[zenabb in reply to TJme]

I would contact your specialist nurse. If you don' know who she is contact the RSA

[LynnCox]

Add to the cold weather no heating in your house - heating a couple of rooms with electric heaters. Plumber has failed to resolve the problem, despite fitting new parts. We've got a seven year old boiler model that has a bad reputation. British Gas are coming out this morning to quote for a new one.

[TJme in reply to LynnCox]

I know exactly where you're coming from Lynn , I haven't had any heating in my house at all this winter , it's not a broken boiler , we just can't afford the bills, last year the heating was on for two hours a day everyday for 8 weeks and my gas bill was over 800 pounds .I can't afford that , hence all the thermal clothing.We even invested in some extreme weather sleeping bags and when we are in our living room of a night spend the night inside them , during the day we have literally made our kitchen the hub of the house staying in there for most of it purely because its the warmest place in the house.

[Yorky in reply to TJme]

We had a new gas combi boiler (Worcester) put in Oct 2010 which has saved between 20 and 25% of gas usauge, and the house is much warmer.

[Yorky in reply to LynnCox]

We had a new Worcester Combi boiler fitted in Oct 2010 which has save us 20-25% in gas. New boilers are much more efficient and the house is MUCH warmer

[LynnCox in reply to LynnCox]

Thanks TJme and Yorky.

British Gas came, quoted and are fitting a new boiler on Friday - yes, the day after tomorrow . We were accepted for monthly payments which is great - can't wait to restore heat.

As we all know, cold + Raynaud's = nightmare.

[LynnCox in reply to LynnCox]

Well the new boiler has been fitted (along with a radiator i our bedroom) and the house is lovely and warm - just in time for the -5C last night and snow forecast for the East of England tonight.

[pamela2]

i have found that most medications i been given dont help me ,i've had raynauds for 56yrs, getting worse as i've got older,it limits me a lot with hobbies house work and shopping, i get deliveries as well,,i find the best gloves are leather with the lining taken out , and when i really need i have a hot black coffee with honey and a drop of whisky,that has served me better than a lot of medication's that had adverse affects...my fingers no longer get to the blackish stage or blisters since getting off medication. must say of course talk to your doc if you alter anything.

[zenabb]

I agree with you about the Raynaud's "attacks". They are not attacks, it's here all the time. I can't understand why they told you that Iloprost at Christmas should last you 5 to 6 months IN THE WINTER. I have Iloprost every two months in the winter. I ask for it and book myself a place when I have Iloprost for the next time. I dread the weather from Siberia.

[TJme]

Thanks zenabb I wasn't aware that you could book ilprost my rheumy hasn't given me any information , other than telling me I would be sorted for a few months ?

[Anteater]

Hi TJme

I also have Iloprost every 6 months continuous for 5 days. Does it work? I think maybe it helps. I also take Losartan and Flouxatine but my fingers are still tinged blue most of the time - even in summer they are tinged blue - gloves all year round. We are all electric in our house (no piped gas). We invested in a multi burning log/coal stove and does keep the house warm. When we first moved in we only had the electric radiators which worked out very very expensive. Hope things improve so you can have your heating on xx

[TJme in reply to Anteater]

Well it worked for about two weeks , then my hands started to get worse again .I take Lorsatan everyday but it doesn't appear to be doing much good .Problem is I only get to see my Rheumy when I have a problem , there's so little information I have actually been given by him Other than if I didn't have the infusions I would lose my fingers .I didn't even see him after the infusions had been started or indeed after treatment had finished ...no follow up consultation ..Nothing ! Not sure where I go from here .

[Anteater in reply to TJme]

No follow up is not good - my consultant and the team always do a ward round on a Wednesday morning so always get to see him and the team when in having Iloprost ... Also rebook my Iloprost admission upon leaving/ I also have a clinic appointment on a regular basis. I also have Scleroderma and other auto immune diseases. Where do you go for your appointments?

[Yorky]

No follow is very bad. Do you have Scleroderma, if Yes you must have regular follow ups. Perhaps you can ask to be referred to one of the Specialist centres. I see a Rheumatologist and Dermatologist, both every 6 months. I have monthly Ioprost and am given my next appointment before I leave the ward.

[TJme]

I haven't been diagnosed with scleroderma just the raynauds , maybe thats the reason I haven't had any follow up appointments .

[Anteater in reply to TJme]

I think you should still have follow up appointments as Raynauds can be severe ...

[nannysue1950]

Re Iloprost infusions - I go into hospital 2 or 3 times a year for 5 days and have 12 hour infusions each day. I can only tolerate it at about 0.9 so maybe that is why it is over a longer period

[TJme in reply to nannysue1950]

It was the same for me Sue my BP kept dropping at one point it was 89/69 and the nurses were looking a bit flustered .I think for you as well as me it is the consultants choice re the amount of hours/days the infusions are for .Do you go to Folkington as well ? and do they ever give you a followup appointment ?

[nannysue1950 in reply to TJme]

I have low BP anyway and because Iloprost lowers it even more then, you're right, the nurses start to get a bit panicky - asking if I feel faint etc - and they then want to lower the dose. I've been going in so long now that a lot of the nurses are used to me and if I say I feel OK then they let me be. Yes, I have been on Folkington but also on Berwick, Cuckmere and even Pevensey. Once, because they had already postponed the infusion because of bed shortages, they even put me in Michelham - luxury eh! But that has only happened once - much to my disappointment - ensuite, bliss!! But, as for follow-up appointments, no I have never been given one when I leave after the treatment. I usually ring Dr Panthatalmam's secretary about a month before I think I will need to go in and they try to arrange it for me. I am lucky, I use Iloprost more for maintenance than for a 'quick fix'.

[TJme in reply to nannysue1950]

I'm not sure I can do that Sue ? it would be nice though to be able to use it as a preventative instead of only getting it at the point I'm told if its not done I'll lose my fingers, but not sure how I'd go about sorting it out or even if I could . I was amazed its been a while since I was last in hospital the charges for TV and Radio & Phone , blew me away ...like being in hospital isn't hard enough without having to pay out 25 quid for the use of a telephone an Tv..My hubby rang me twice for all of three minutes from our home phone and the bill when it came in freaked me out for two three minute calls to the hospital number I was charged 11 pound ! Think i'll take my lappy in if I have to go back .

[nannysue1950 in reply to TJme]

Which consultant are you under. I have always found Dr Panthakalam (Dr Sam) to be very understanding and helpful. I don't usually bother to see him in clinic but I see him when I'm in for an infusion and he does his ward round. You're right the charges do seem to have increased for the use of tv etc. I tend to use the tv in the day room as I find it's good to get away from your bed and the ward for a while if you can. Obviously depends how poorly you feel while having the infusion. If I keep it fairly low at 0.9 I don't find I have too many side effects - before I start I take a couple of paracetamol and cyclizine (anti-sickness) and this usually keeps me ok.

[TJme in reply to nannysue1950]

I'm under Dr Sam too .I couldn't take anything past 0.9 without my BP dropping really low and getting really bad headache.Doesn't help having migraines as I'm supposed to take Propanalol but had to stop for infusion .