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Raynaud's phenomenon and now Sjogren's syndrome..

MikefromsouthNZ profile image
MikefromsouthNZ

I have Raynaud's in my fingers, nose, lips and more so with my feet and toes.. The summer months help my nose and lips, but I still need to wear thermal gloves with heavy garden gloves over-top, to keep my fingers warm.. But my feet and toes are absolutely frozen 24/7 all year round..

I find the reusable hand warmers helpful, plus I wear fur-skin boot liners inside my thick Sheepskin boots.. my toes throb with pain and my lower legs and feet are always numb and frozen to touch.. my skin is a creamy pale in colour but the soles of my feet are usually a pale purplish most days..

But my immediate news is I now have Sjogren's syndrome, and it's real bad in my eyes... Dose anyone else have this issue as well as I'd like some feedback on how to cope with this disease, please..?

10 Replies

I also have Raynaud's and Sjogren's. I have been taking Pentoxifyline ER 400mg 3x a day for blood flow. Just 2 weeks after I began this drug, the Raynaud's decreased by 80%. I rarely get an attack, though I never had it as bad as you. Maybe give it a try. It's purpose is to "make your blood cells slippery", therefore, the blood flows more freely to your extremities. As for the Sjogrens's, you probably already know about the Biotene products for dry mouth. I also have tear duct plugs in a four ducts. It has changed my life!!! I hope this helped and that you find something that works for you. Blessings

Hve you seen a rheumatologist? You need treatment as soon as possible. You cannot go on as you are. Best wishes.

THANK YOU BOTH FOR REPLYING TO MY POST..

JUST THIS WEEK MY DOCTOR HAS PUT ME ON NEFEPADINE A CALCIUM CHANNEL BLOCKER, AND HE FEELS IT'S A BIT OF A LOWER DOSE JUST TO START WITH, AND HE WILL INCREASE THE DOSE AGAIN IN TWO MONTHS TIME.. I SAID I JUST CAN'T GO THROUGH ANOTHER WINTER WITHOUT HIS SUPPORT, AS I'VE BEEN BATTLING WITH RAYNAUD'S FOR FOUR YEARS NOW, AND THE PAIN FROM MY TOENAILS THROBBING WAS ENOUGH TO MAKE ME CRY..

HE HASN'T WRITTEN OFF OTHER CHANNEL BLOCKERS YET, SO I'LL TELL HIM OF THE Pentoxifyline ER 400mg 3x a day.. I'M KEEPING NOTES OF ALL THE POSSIBILITY OF ALL THE THINGS AND MEDICATION ALL I HAVE RECEIVED... I DO CARE FOR MY FEET AND FINGERS WELL, BUT THERE IS ALWAYS OTHER POSSIBILITIES I CAN TRY TOO..

MY MOST DIFFICULT ISSUE IS I ALREADY TAKE OTHER MEDICATIONS FOR MY DISABILITY PLUS OTHER CHRONIC ILLNESSES, SO TAKING ANOTHER TYPE OF MEDICATION MIGHT WORK IN REVERSE ON THE MAIN MED'S I NEED TO TAKE, AND THAT IS A HUGE RISK.. I NOW AM QUITE HAPPY ON OTHER INTERVENTIONS WITH A MORE PRACTICAL AND PROACTIVE STANCE NOW.. I'VE HAD TO LIVE IN THIS BROKEN BODY NOW SINCE MY TRAUMATIC BIRTH, AND AS AGE IS SO FATIGUING NOW I NEED TO TAKE A GOOD LOOK AT MY FUTURE, WITH MY BEST INTERESTS AT HEART..

SHARING MY MORE PROACTIVE STANCE WITH MY PRIMARY DOCTOR, WE NOW WORK IN A FAR CLOSER TEAM, AND MAKE MORE DECISIONS MAKING MORE AMICABLE TOGETHER NOW.. THERE IS ALWAYS GOING TO BE MORE HURDLES YET TO CROSS, BUT I HAVE MADE MY REQUEST TO LIVE A BETTER QUALITY, INSTEAD OF A MORE QUANTITY OF LIFE..

MY BIGGEST FEAR AHEAD IS ANOTHER AUTOAMUNE DISORDER, BUT I HAVE ALL MY FINGERS FIRMLY CROSSED...

THANKS AGAIN FOR YOUR HELP AND SUPPORT AS I DO APPRECIATE ALL YOU HAVE FORWARDED TO ME.. TAKE CARE AND KEEP IN TOUCH..

MIKE

U sound like me. With the ailments and more meds. I have heart failure so im limitted to few meds I am ok to take. Nifedipene can cause heart failure. Yet they put me on it. The pharmacy told me about the causes. She wasn't happy id be prescribed it. But my cardiologist said I ok to try it. Helps a bit can tell when I am due the next capsule any way. Ha. But still have constant pain up my arm. Hate it. Limited to basically doing nothing already and im only 43. Hope U all get sorted to minimum pain at least x

Thank you for sharing tinaparkii.. I'm now taking a different med called Felodipine 10mg at bedtime, and I feel a lot better since my Primary Doctor made the change.. My circulation is heaps better and to date I haven't had any side effects. My toes and fingers are less painful and my toes don't throb like they used to.. I still need to wear a lot of layers, especially my socks and gloves as my feet, toes and fingers can still get quite cold, if I'm not careful...

I hope you find the help you need, as heart problems must be extremely difficult plus having Raynaud's issues as well.. I do hope the Doctors can find a better med to help, as you must worry taking Nifedipene.. Best of luck and possibly Felodipene might help you too..

Thank U. Yes I do worry taking it. They changed it to adalat be4 Xmas slow release. But made me dizzy and sick. So changed it back again.

Mike, I have Asthma, Arthritis, Depression, Fibromyalgia, Hiatus Hernia, Insomnia, Migraine, Primary Biliary Cirrhosis, Raynauds, Scleroderma, Sciatica, Sjorgren's and Telganl????? something. So I know how difficult it is when all you seem to do is collect yet more illnesses. Just after Christmas (2011) I had severe stomach pain and constantly felt sick. My GP ran some blood tests and there seems to be a problem with my pancreas, now. So I just thought, not more. I seem to just 'collect' illnesses and I know its so hard to keep from feeling 'why me?', isn't it? (:-)

YES, WE SHARE VERY SIMILAR SHOPPING LISTS AND IT DOES SOMETIMES FEEL AS GETTING USED TO A NEW ILLNESS, THERE IS ANOTHER WAITING JUST AROUND THE CORNER. BUT THERE ISN'T A LOT WE CAN DO AS I SEE THAT SOME ILLNESSES ARE A FORERUNNER FOR ANOTHER SOMETIME AHEAD.

I HAD ONLY MY CP TO LIVE WITH UNTIL I TURNED 30, AND AFTER THAT BIRTHDAY, I HAVE PICKED UP FAR MORE SECONDARY DISABILITIES AND NOW ITS MORE CHRONIC ILLNESSES THAT SEEMED TO PLAGUE ME NOW.. I BELIEVE AFTER I GOT VERY RUN DOWN, I GOT FIBROMYALGIA, AND THE REST OF MY LIFE ALMOST EVERY SECOND OR THIRD YEAR SOMETHING NEW COMES ALONG...

I OFTEN THINK OF HOW LIFE MUST OF BEEN FOR POOR LZARS, IN THE BIBLE MAGGS3PETTS.... THANKS FOR SHARING AND PERHAPS WE COULD SHARE MORE IF THAT'S POSSIBLE SOMETIME.? MIKE

Mike

You might want to join the Sjogren's World forum, to speak with lots of others with Sjogren's and Raynauds.

Kathy

THANKS FOR PASSING THIS INTO ON TO ME PIPSMUM, MIGHT TRY MY LUCK IF I CAN FIND SUPPORT THERE AS WELL...

KIA ORA FROM MIKE

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