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Old 03-14-2009, 10:29 AM   #1
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Question Lupus and Raynauds Advice

Hi
I am newbie to this whole concept.

I was diagnosed with Raynauds which no one else has in my family about two years ago. It confused the specialist when I was diagnosed as it started just at the age of 35 and progressed to rapidly to extreme attacks I had to go into the hospital every five weeks for intravenous medication which lasted upto five days. The specialist wrote to my GP and advised it was not behaving normal and was not reacting to drugs as it should and they thought there was a secondary illness somewhere however the blood counts were fine.

Recently I have been very tired, and my joints are aching (sore) but not the bones, my hair is falling out in chunks and I have now got three little lumps under the skin on one of my legs (about the size of a pea). The first one appeared when my Raynauds was at its most extreme and I had it removed they advised it was fibrous however I now have two more appeared.

I have now been referred back to the hospital but I was just looking to see if anyone else had similar symptoms with lupus as this can be a secondary illness to Raynauds.

 
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Old 03-14-2009, 11:53 PM   #2
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Re: Lupus and Raynauds Advice

dear dragh090671,
I have both lupus and Raynaud's, and I experience symptoms almost identical to yours. As with most people with lupus I am tired all the time, my joints always give me constant pain, and when I'm in a flare my hair falls out like crazy. When my Raynaud's is really bad I get lumps in my skin but they may not be the same as yours as mine tend to go away as soon as my flare is over. I hope this could be of some help to you and if you have any other questions feel free to ask

 
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Old 03-15-2009, 05:56 AM   #3
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Re: Lupus and Raynauds Advice

Thanks

It is good to hear someone else has similar symptoms and I am not crazy. I have to say my local GP is great it just seems to be when I go to the hospital there answers are well that is not normal or I cannot understand that and you start to think it is yourself going a bit crazy after a while

 
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Old 03-15-2009, 08:20 PM   #4
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Re: Lupus and Raynauds Advice

What kind of Raynauds attack lands you in the hospital with IV medication? I have Lupus and Raynauds, I have several attacks where my hands go white, then start tot urn blue if I don't get the blood flowing on my fingers. When it's that bad a hot bath makes it go away. This winter in the Puget Sound has been much colder and we are still getting snow storms, so it's a challenge to keep our hands warm enough. Nothing like a hot bath to get the blood flowing into your whole body, toes, ears and nose too!

 
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Old 03-16-2009, 03:53 AM   #5
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Re: Lupus and Raynauds Advice

I had up to 15 - 20 random attacks a day for no apparent reasons it was not triggered by the cold. The attacks could last up to an hour, hands, feet, nose, lips, ears would go white and a really dark black colour and the pain was severe. I tried everything, eating ginger, hand warmers, hats, gloves everthing anyones suggested etc and nothing worked, I would have attacks during my sleep and the tablet medication did not stop the attacks. The hospital did tests and the attacks came and went as they pleased, they had no trigger to set them off, they just happened, I was sent for tests on my lungs and heart and because there was no apparent trigger for the attacks they diagnosed I did not have primary raynauds but could not find the secondary part for secondary raynauds. The hospital had concerns the attacks could happen anywhere there was blood supply and it was then I had to go to the hospital every five weeks for iloprost treatment which is an unlicenced drug but it did work.

 
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Old 03-16-2009, 05:40 AM   #6
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Re: Lupus and Raynauds Advice

"Dragh", I've never read that Raynaud's alone can cause pea-sized subcutaneous lumps (but I'm just a dumb patient!).

Have you asked your dr. if there are possible causes other than Raynaud's? e.g., things seen in lupus patients, like lupus panniculitis (inflammation of subcutaneous fat pads) or cutaneous vasculitis? Also, things seen in the general population?

My hubby has lipomas on his arms & legs that aren't medically dangerous, but they're a lot larger than pea-sized. I imagine they were smaller at some point before I knew him. I don't know whether they're considered "fibrous".

You didn't say if these things hurt---hope not! And I hope your drs. have fuller answers this time around, and that you get no more of these. Post updates when you can, OK? Sending you my best wishes, Vee

 
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Old 03-16-2009, 07:20 AM   #7
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Re: Lupus and Raynauds Advice

Wow, that must have been frustrating for you' I'm in most of the time, but just eating a bowl of ice cream triggers and attack for me. If it is under 50 degree's I get cold hands, but so far I've been lucky enough to only experience 1 or 2 attacks a day during the winter. In the summer however the problems my hands have are getting red, swollen and stiff so I can't over use them. I hope you don't have to go through that again!

I'm assuming they have tested you for Lupus? Have you worked with a lot of power tools, especially ones that vibrate. Even though mine is secondary to the Lupus I was a landscaper, and a landscaping maintenance so I used power tools a lot, and before that a housekeeper so I vacuumed a lot.

Last edited by Alexa3; 03-16-2009 at 07:23 AM. Reason: Added text

 
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Old 03-16-2009, 05:36 PM   #8
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Re: Lupus and Raynauds Advice

I also have lupus/raynauds/sjogrens...I have what is like chronic raynauds all over...my hair is also falling out in clumps, mainly from the back on the bottom. Im guessing its more vascular now, which is what Im guessing might be wrong with you. There are several kinds of vasculitis associated with lupus/autoimmune in general. Make sure you get your doc to check into that. There is some labs and or possible biopsy's they can do.

 
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Old 03-26-2009, 06:29 AM   #9
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Re: Lupus and Raynauds Advice

Hi
Thanks for your replies it has really helped. The hospital do blood tests but I get told they come back ok not quite sure what they test for though as no one really tells you anything. They have tested for rheumatoid arthritis which came back negative and diabetes and that was negative as well.
I have to say my joints especially my knees hurt like crazy pretty much most of the time however they are not swollen and they do not get hot and my own GP agrees it is not rheumatoid arthritis. I get really quite tired at times and sometimes it seems like a big effort to just lift a cup off the table, however other times I seem to have more energy. Just waiting for appointments now and the results of more blood tests. I have to say as my Raynauds attacks are unpredictable I do not have the fear of going down the freezer isle or having to stay in, they just come and go as they please with no rhyme or reason, they stuck my hands in ice to try and trigger an attack and they were absolutley fine however the next time I went to see the consultant I was sat in his room talking to him and out of the blue I had an attack for no reason, nothing had changed. He got others to look at it while I was in hospital and they tried everything to make it happen and they ruled there was no triggers like change in temperature etc so they thought it was secondary Raynauds. However they did some tests and they came back negative so then they were lost. They wrote to my GP and told him they would just have to wait until I got more ill and then they might be able to identify the second part, so we have all been sat waiting for things to get worse, so hopefully now things have got worse they will be able to sort it - I will let you know.

Once again thanks for your kind support.

P.S. I have not worked with any vibrating machinery either.

 
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Old 04-17-2011, 01:40 PM   #10
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Re: Lupus and Raynauds Advice

I have had the same similar problems as Drag. The doctors feel I have Lupus even though my tests fluctuate from negative to positive. My fingers, toes and nose are effected by the raynauds. I have been extremely tired and in pain. It's getting worse. We have concluded that it is probably fibromyalgia combined with the lupus. It took me many doctors to find one that did not treat me like I was crazy. Don't give up. I am now on Plaquenil and Prozac. The fibromyalgia drugs like Lyrica and Savella are very scary. My Reum. won't go near them. My DO had me try Savella and I thought I was going to have a heart attack and jump off a building. I contacted the FDA. It is very frustrating. Prescription strength ibu helps a little but I do not want to take it all of the time because of possible side effects.

 
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Old 05-25-2014, 06:38 PM   #11
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Re: Lupus and Raynauds Advice

yes this can be a connection raynards and lupus can very well be connected i have had raynards for many years and now have been diognoised with lupus do not stop until you get an answer it has taken the doctors many years to reach the conclusion and the cost to my health is considerable

 
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Old 05-26-2014, 08:46 AM   #12
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Re: Lupus and Raynauds Advice

Dragh, the Raynaud's responds well to amlodipine, a drug usually used for high blood pressure. It is taken orally, daily, and helps prevent the spasms in the arterioles of the hands, fingers and feet. I would ask your Dr to try that. Also, I would get a copy of your lab results from hospital and Dr's offices and keep records of your own so you know what has been tested and exactly what the results are. The amlodipine will prevent the pain you get from lack of blood flow. Pentophylline is another drug sometimes used for Raynaud's as well, and both could be used if needed to get control of the pain and spasm.

 
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