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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 Shona Arthur

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Posted 14 September 2010 - 06:39 AM

Hi,

I went for my 3 monthly checkup today feeling terrible. Am suffering from migraines and loss of sensation my fingertips. Found that the pain in my hands, wrists and feet has been getting worse. Told the consultant, who seemed more concerned about how my Raynaud's was. Said that there was not much she could do about the numb fingers as my skin didn't seem too thick yet. She has given me prozac to take along with the nifedipine and lostartan potassium I am already on. I don't know how I feel about the prozac. Is anyone else on it and has it made any difference? It is supposed to help the circulation in my fingers but I am not sure.

Any thoughts from anyone would be appreciated.

Love Shona

#2 Amanda Thorpe

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Posted 14 September 2010 - 05:40 PM

Hello Shona

According to Webmed, Prozac can be beneficial in treating Raynaud's. My Raynaud's isn't bad enough to need medication so I have no recommendation to make here but no doubt others will.

From memory you've had scleroderma for about 2 years? I assume your rheumatologist arranges for the standard tests every year like an ECHO and lung function test? I can't remember if you're seeing a scleroderma expert or not so I'll give you the details of UK experts, the list includes all specialities so just pick out the rheumatologists.

Take care and keep posting.
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#3 Buttons

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Posted 14 September 2010 - 08:11 PM

Hi Shona

I'm on Prozac for my Raynaud's because things like Nifedipine, Amlodopine didn't help me at all! I take liquid Prozac because my Rhuematologist said that there had been research done at the London Royal Free Hospital & they'd had some very good results with it. My Raynaud's still bothers me but the length of my attacks has been cut down & they're a little less frequent now. You only take it in small amounts, much less than for depression, hope this helps.


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#4 Shona Arthur

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Posted 15 September 2010 - 03:07 AM

Hi Buttons and Amanda,

Thanks for your replies. I am tested every year for heart and lungs, plus barium swallows. Was feeling quite neurotic last night about the consultant and felt she didn't really understand. I dont see a sclero specialist and they want me to wait until I am a bit older, I am 32. their concern at the moment is to make sure I try all the meds the rheumatologist suggests and see how I get on.

Thanks, better go, kids are home from school and it is pandemonium here.
Love Shona

#5 Amanda Thorpe

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Posted 15 September 2010 - 07:53 AM

Hello Shona

Interesting strategy about waiting until you get older to see a specialist because scleroderma usually has an active period of 3 to 5 years and then it can become inactive. It's during the active phase that it's most important to have regular tests and to quickly treat symptoms.

Take care.
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#6 Shona Arthur

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Posted 17 September 2010 - 05:22 AM

Hi Amanda,

Consultant thinks sclero is often hormone related and often becomes much worse after menopause. Initially they told me to have more kids to lesson symptoms. But 3 is enough. Therefore they want me to try as much as possible while I am in my 30s. I dont know, everyone tells me different things not. I dont see my general practitioner as he always refers to the consultant, so I tend to wait for my 3 monthly appointments to discuss any problems.

Thanks, love Shona

#7 lizzie

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Posted 18 September 2010 - 03:58 AM

Hi Shona, I was seriously concerned when I read your latest posting- I really think that your consultant has some strange ideas about scleroderma, especially advising having more children to lessen the symptoms! Could you raise the issue of seeing a scleroderma specialist with your general practitioner?

Lizzie

#8 Amanda Thorpe

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Posted 18 September 2010 - 07:13 AM

Hello Shona

I'm with Lizzie you really want to consider seeing a scleroderma expert, you can seek a referral from your general practitioner. See our information about scleroderma and hormones, it reads: Hormones and Chromosomes have been found to contribute to the development of autoimmune diseases. This may explain why women are more susceptible to autoimmune diseases than men.

We also have information about scleroderma and pregnancy which reads: Many systemic scleroderma patients are able to successfully bear children, however it is always considered a "high risk" pregnancy and extra monitoring and precautions are necessary, both before and during pregnancy.

Of course I have no medical training and have only found out what I know from being a person with scleroderma but I am at least treated at a centre of excellence for scleroderma so I know what they tell me is correct.

Take care.
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#9 Shona Arthur

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Posted 20 September 2010 - 01:06 AM

Hi,

Thanks for all the comments. I thought I should give you a bit of history about me to see what you think. I will talk to my general practitioner as I have to see him in two weeks to check my bloods and BP after taking these new tablets. I found out I had sclero by accident two years ago. We were training to climb Ben Nevis and the rest of our group noticed that everytime I started jogging my hands went into spasm with Raynauds. I have had Raynauds since my teens. Plus my hand grip wasn't too great. So I went to the general practitioner who took bloods, it came back as ANA positive for limited systemic sclero, and I was referred to a consultant. The consultant sees me every 3 months and I have yearly Heart and Lung scans. I also have gastro involvement, with some oesophical damage and had a small op last year on a tear in my lower intestine. Currently I am taking nifedipine 20mg, lostartan postasium 100mg and prozac 20mg for my circulation (I am prone to the skin splitting on my fingers and have a loss of sensitivity in my hands and feet), plus omerprazol 20mg for heartburn. I have tried a load of other meds but most of them do not help the Raynauds. Increasingly I have been suffering from joint pains in my fingers wrists and shoulders and from migraines and fatigue. I have also lost a lot of the fat from my hands (pity it was not my bottom) they are very wrinkly and spindly.

I was quite upset when I wrote on Tuesday as I had explained all of this to my consultant but all she seemed interested in was how my Raynauds was and said there wasn't much she could do about the tiredness or joint pain.

I am struggling a bit with all of this, I have 3 kids and try not to dwell on how I am feeling too much.

Thanks for all your support,
Love Shona

#10 Amanda Thorpe

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Posted 22 September 2010 - 09:39 AM

Hello Shona

Sorry for the delayed reply! The medications you mention are pretty common in scleroderma and it does seem as though your symptoms are being treated as they appear which is part and parcel of scleroderma. In addition are you on any form of immunosuppressant? Immunosuppressants aren't for everybody but I assume your rheumatologist has discussed this option with you? According to the Johns Hopkins website The most popular approach to controlling the inflammatory phase of scleroderma is the use of immunosuppressive therapy. The rationale is that an autoimmune process is causing the inflammation and the downstream result is tissue damage and fibrosis. I have had scleroderma for 3 years and started immunosuppressants 2 months after diagnosis and expect to be on them for at least another 2 years to take me through the 3 to 5 year active period.

It's true that there is no cure for scleroderma fatigue and it is one of the most difficult symptoms to try and manage daily. Some people feel an improvement in their fatigue levels from their immunosuppressants as well as an improvements in joint pain and inflammation, needless to say some don't but either way there are certainly medications that can be tried.

My concern was stoked by the reference to pregnancy, waiting until you're older, in addition the potential lack of immunosuppressants.

Fat loss is never where you want it...never and so you don't get your hopes up it never will be! Many people with scleroderma can relate to loss of padding on the feet and hands. Once upon a time looks determined footwear first and foremost for me, now it's comfort...yep and I'm only 42!

You may be interested in the information on site about scleroderma and migraines. Having suffered with migraines on and off for years I would dearly love to pin them on scleroderma but can't yet. I do know how debilitating they can be and how it's the last thing you need on top of everything else.

Take care.
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#11 Shona Arthur

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Posted 04 October 2010 - 12:10 AM

Hi Amanda,

Sorry it has taken so long to post back. I have spoken to my general practitioner, and he is writing to the consultant re immune suppressants. They have not spoken to me about this and they do seem to have different ideas about how to treat me. When I first met my consultant we discussed my raynauds and stiffness in hands and feet. I said coincidently that the only times I have not suffered from raynauds was when I was pregnant. She said that was because rheumatic disorders often lessen with the increased hormome levels in pregancy, and joked that I should have more kids to keep it at bay over the winter. I can't have any more children though as I had placenta previa with my last one and spent 6 weeks in hospital so they advised the risk of hemorrage is too great.

Different people at my hospital do have different views about my condition. it depends on who I talked to. The surgeon who did the small op last year on my lower intestine, was very concered about the sclero, and they took extra care when putting the drips in, as the veins in my hands burst. The staff nurses are great and I always have a phlebotomist when taking blood as it is tricky. But my rheumatologist often makes me feel that I am complaining about nothing, and have a wait and see approach. I often feel that I shouldn't complain and just get on with it. They have told me that I will be worse as I age, so while I am younger I should try to keep the symptoms at bay.

Hope that helps. Thanks for your concern. Love Shona

#12 Buttons

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Posted 04 October 2010 - 06:32 AM

Hi Shona,

My rheumatologist takes the same sort of view has yours - a wait and see approach and also says there's nothing he can do to help the fatigue or joint pain. Also my fingers are getting stiffer and have very shiny skin. He has never mentioned any form of immune supressants to me.

Buttons

#13 night owl

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Posted 15 May 2011 - 04:27 PM

Hi

A long time ago I did try Prozac for Ulcers and Raynauds but I got insomnia whatever time of day I took the drug so I did not get pass first base with it.

I take regular Nifedipine for Raynauds, which does help but an Iloprost infusion has always worked the best for me particularly when I have ulcers on fingers or legs. Iloprost does have its side effects but when the benefits compared to the side effects are equal then due to past experiance I have found its time for another infuson. The side effects do have to be managed and I have always found the results from the infusion have always been worthwhile.

Gil

#14 Amanda Thorpe

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Posted 16 May 2011 - 07:51 AM

Hello Gil

Ah yes, Iloprost! I have two foot ulcers and am at the Royal Free next month and dread the thought of them insisting on Iloprost if my ulcers aren't healing. Mind you if it would make them heal...

Take care.
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#15 lizzie

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Posted 16 May 2011 - 11:59 AM

I'm in for the dreaded Iloprost again next week. Not pleasant, but does make a big difference - and I'm convinced that my brain functions better afterwards!
The Raynauds is in overdrive at the moment due to the sudden change in the weather to cold and windy - just haven't been able to get warm for the last couple of days despite cranking up the central heating and sleeping in a fleece. Have worn a coat and fingerless mitts all day at work today much to the incredulity of my colleagues!

Lizzie

#16 Amanda Thorpe

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Posted 16 May 2011 - 02:39 PM

Hello Lizzie

You have my sympathies for the Iloprost! Hopefully some of the warmer weather will come back again which may help with being cold. Being a "hottie" I'm enjoying the cooler weather...sorry!

Take care.
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