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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 Buttons

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Posted 29 October 2007 - 02:37 AM

I hate the cold!!!

My Raynaud's is now working overtime & the temperature is still not that cold, I've been wearing gloves all summer but now I'm finding that even sheepskin mitts are no use. My hands are constantly icy cold & attacks are very frequent infact the slightest change in temperature & my hands react. They never seem to get a normal blood supply any more & the pain is awful.
I was taking Nifedipine but these gave me dreadful hot flushes/sweating so consultant told me to stop taking them which I have so no hot flushes but other symptoms are much worse. So rang rheumatologist 's secretary & she spoke to him for me & he's said to try Felodipine (I think it's Norvasc in the states) so she will fax letter to general practitioner & I see him on Wednesday.

What dosages do people take?

Do you find it helps?

Is the pain I get from the SSc or just the Raynaud's?

My hands especially the back of them & finger tips are always cold & I'm getting horrendous pain in the thumb joints in particular, does anyone else get this?

Sorry about the moan but feeling pretty fed up with constant pain & feeling cold.

Jensue

#2 lizzie

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Posted 29 October 2007 - 04:40 AM

Hi Jensue, I sympathise, my hands too have been playing up in this recent spell of colder weather we are now having in the UK, although not badly as yours by the sounds of it. I had problems with the nifedipine so changed to nicardipine (30mg X3 daily) which was much better in terms of side effects. I don't know what Feldene is like. I also have Iloprost every three months - which really makes a big difference, I don't know whether you have had that before- would be worth asking about it if not.

Re the pains in the finger joints, I have a problem periodicaly with arthritis type pain in just the left thumb but usually resolves itself after a few day. Its obviously something you need to ask your Dr about.

I don't know about you but I actually find it harder to keep my hands warm when I'm inside than when I'm out. I have some fingerless fleece gloves that help a little but still get long periods when hands are very icy. Outside I use handwarmers when the weather gets really cold -keep your hands really toasty. Now all the winter stuff is in the shops I went looking for some mittens, as they keep your hands warmer than gloves but haven't had any success yet!
Hope you get the problem sorted a bit
Lizzie

#3 relicmom1

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Posted 29 October 2007 - 04:43 AM

Hey Jensue, I have Raynaud's and I take 5mg of Norvasc. It helps me, but I still have the attacks, they're just not as bad. Now that it is fall and winter coming, colder temps and drier air, my fingertips will crack, not true ulcers, but painful just the same, plus the super dry / itchy skin. I use a moisturizing body wash and an inshower lotion. Hang in there!
Peace :)
Barbara aka relicmom1

#4 Tammy

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Posted 29 October 2007 - 05:45 AM

Jensue, I am just like you...hate the cold!! Felodipine is generic for Plendil, my rheumatologist started me on amlodipine (Norvasc) on the 4th of this month she added papavarine on the 14th, I have not yet noticed a difference. I am taking 5mg of amlodipine a day and 300mg of papavarine. I stay cold almost all of the time, I even wear my jacket while I work (sometimes my gloves too!). My rheumatologist also told me to wear a hat (like a ski cap, something that fits tight on your head) because that is where you loose most of your body heat. If you're not wearing a hat try that, see if that helps you some. I have to wear mine when the temp hits 70 or below. At first I felt stupid, people would ask me if I was expecting snow but now I really don't care, they have no clue the pain and damage Raynauds can cause.

Warm wishes ~~~Tammy~~~

#5 Buttons

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Posted 29 October 2007 - 09:09 AM

Firstly Lizzie my general practitioner suggested I try to get some snowboarding mittens which are expensive but he said they are very good. PM me if you want to know the make. I've not bought any yet because prefer to try them first - I have very long fingers so finding ones that fit are difficult.
I have had an Iloprost infusion but it didn't work very well at all.

I just got fobbed off when I mentioned the pains to my general practitioner he said its just the Raynaud's! But that doesn't make them swell & get hot at the joint does it?

My skin does itch & gets very dry & cracks so I use plenty of hand cream, I found the sort that is reccomended for fishermen quite good to use.

Tammy I must admit I don't wear a hat that often but use the hood to my duvet jacket which is very warm but doesn't always stay on when it's windy, it's because my hair is so fine that I look like I've no hair which is not so good when I'm working.( pur vanity I know)
I have two duvet jackets which have down filling with hoods & they're lovely & soft but very warm. I wonder if you can get mitts with down fillings?

Jensue

#6 Sheryl

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Posted 29 October 2007 - 12:54 PM

I take 10 mg Norvasc. It has been a tremoundous help. Also the weight gain. I don't like it but I am now much warmerbecause of the added weight. Can you believe it. I am no longer freezing all the time. Oh! I wear a tam or a little berra' I probably spelled it wrong. But, when it started getting colder I started wearing them. I forget I have them on they are so comfortable. If you buy a couple to match outfits you can wear them during the day and no one would think a thing. My husband has to sometime remind me to take mine off. I almost went to bed with mine the other night. It is an exact match to my hair and I didn't notice I was still wearing it. When it gets really cold I bundle up and I don't worry about what others think. I have my microwave bed booties and mitts and I just settle in. Sheryl
Strength and Warmth,
Sheryl

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#7 Kamlesh

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Posted 29 October 2007 - 05:21 PM

Hi Jensue, Barbara and Lizzie,

I take Nifedipine ER 30mg. Normally I am OK, but when temperature starts below 60 degrees F, I have difficulty. I am diabetic and I would not be able to squeeze out a drop of blood from my any fingers for glucose testing and it starts paining. Nifedipine definitely helps.

Thanks for pointing out side effects of the drugs. I have severe insomnia (one of the side effect of the drug), but did not make any difference after stopping the drug.

Also Norvasc, Nicardipine and Nifedipine have very similar side effects. All three drugs are from same class – calcium channel blocker.

May be some one on the board can point out differences. I am very sensitive to side effects and I am going to discuss this with my rheumatologist next time. He was reluctant to start Nifedipine unless I have to.

Thanks
Kind regards,

Kamlesh


#8 jaxs

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Posted 30 October 2007 - 10:02 AM

i also hate the cold and in england at the moment its freezing,brrrrrr!! my Raynaud's is at its worsed and my hnads get so stiff the pains are unreal, I have started to get watery like blisters on my fingers when the top comes off them they are like hard painfull scabs anyone know what this is and is it related to sclerdorma have a gd nite jaxsxx :rolleyes:
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