littlepoppy

Systemic Sclerosis

6 posts in this topic

I was diagnosed with SSc last year, Doctor's think I have had it for the last 20 years (I'm nearly 43) I also have Raynaud's and recently diagnosed with PBC (Primary Biliary Cirrhosis). Get Blood taken every 2 weeks just now because my liver levels are too high, this condition really gets me down because I sometimes feel people don't understand that I am in pain. The SSc effects my hands and feet and I am in constant pain everyday. My Doctor has taken me off my medications for scleroderma just now because of my liver levels. Would love to hear from anyone who has the condition x

 

Karen xx

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Hello Karen

 

Welcome to the forums. You've not clarified a few things so I've assumed the doctor is your general practitioner and the medication is an immunosuppressant...

 

I recently discussed this very issue with another person with scleroderma, they are on mycophenolate (Cellcept) and their general practitioner wanted to reduce the dose because of the level of their liver enzymes which were going up and up. However their scleroderma expert made the decision to continue with the mycophenolate despite the rising enzyme issue.  What you have to remember is that a scleroderma expert will have more experience of the disease and the drugs used to treat it. That being the case, what appear high levels to a general practitioner with one, maybe two, scleroderma patients are par for the course to an expert with many patients. No doubt your general practitioner's doing what they think is best for you within the scope of their experience but the scope of their experience is the potential problem and the reason you need to be under the care of a scleroderma expert.

 

Pain in scleroderma is both common and underrated and let's not forget under treated. It commonly affects joints, hands, feet and skin and needs to be treated with more than just opiates. Have you considered a pain management referral, some people find this helpful. Very often general practitioner's make a total mess of treating pain especially chronic pain which in scleroderma can range from mild to severe.

 

I hope this helps and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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International Scleroderma Network (ISN)

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Hi Karen,

 

Sorry to hear that you have SS, you sound to have a similar history to mine, except that for me my Sclero was not recognised until I 10 years ago when I was 59.   As a consequence, I received no treatment at all until it was too late.   I often wish that I had the opportunity to treat my internal involvement because now I am sorely troubled by it all.

 

As well as SS I have Sjogren's and PBC.   Is your PBC being treated?   I have some cirrhosis and am being looked after by a Hepatologist.   This is in addition to the Rheumatologist and the Gastro Man and the Cardiologist.   PBC symptoms and progression can be managed with medication and diet so like Amanda I would like to be sure that you are being treated properly.   If you are in the UK there is a good deal of awareness of PBC as I have learned, as well as Scleroderma Experts.

 

Keep in touch and ask us for any more information you may want.

 

Judyt

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Hi Karen,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Scleroderma, Raynaud's and PBC and I've included a couple of links to give you some more information.

 

I take an immunosuppressant (Azathioprine) and when I first started it I did have rather high liver enzymes which concerned my doctors; however, we played around a little with the dosage and found that by reducing it this solved the problem to a degree. It also does cause my Mean Corpusular Volumes (MVC) to be a little on the high side, but my consultant considered that to be acceptable when weighed against the benefit of the immunosuppressant.

 

Amanda has made an excellent suggestion regarding the referral to a Scleroderma specialist, as sadly many rheumatologists and doctors do not have the knowledge and expertise to deal with such a complex disease. As she has said, unfortunately pain in the joints is quite a common feature of Scleroderma (I suffer with this myself) and her suggestion of a pain management referral is a really good one.

 

Now that you've found our forums and joined our community, please do keep posting and let us know how you're progressing.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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I take Methotrexate and my blood tests are take every month but are constantly swinging high and low but because it's helped me so much the Rheumatologist says to stay on it & they just keep a close eye the blood results. 

 

Like Jo, I suffer with joint pain and it can be very troublesome especially in colder weather.

 

Buttons

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Hi Karen,

 

I am SO glad you joined this great forum, though I'm sorry for the reasons you have been experiencing.

 

The ladies who have posted before me are VERY well-versed to speak to your issues and I'm sure all they have offered you will give you comfort, as well as confidence to better deal with your health issues.

 

As has been suggested, a Scleroderma Specialist is best able to treat/help you with these issues.

 

Please keep us posted/updated? xx :emoticon-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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