Diagnosed with limited cutaneous systemic sclerosis in 2017 secondary Raynauds started 15 years ago.
Severe Raynauds, recent GI issues including IEM - ineffective oesophageal motility, GORD, mild Oesphagitus (spelling). Recent bloods have shown a decline in kidney function so my GP wrote to my rheumatologist, his reply, I think after all I’ve read isn’t very reassuring and not sure I agree. Feeling fobbed off. Could someone read my latest admin letter and offer advice? Am I’m being too untrustworthy?
Many thanks in advance
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-missymoo
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Hi Missy Moo / I guess like most here with scleroderma and Raynauds I have limited knowledge but always trying to learn from other people's experience. I feel your hospital letter is informative and they do appear to be responsibly managing your on going care. Everything that happens to my body I always feel is related to my scleroderma but my rheumatologist invariably assures me that it relates to osteoarthritis / osteoporosis or just old age! Just remember it's your body and self monitoring is sensible (something my rheumatologist totally approves of) and then just keep asking questions. Good luck.
Hello, From what I know about lcss with anticentromere autoantibody, what they are saying is correct. I have the same diagnosis and have always been told renal problems would be very unusual with our autoantibody profile. Monitoring and treating your (only very slightly) elevated bp and having an ultrasound seems like sensible advice.
The most serious risk factor for our autoantibody profile is pulmonary arterial hypertension. About 1 in 5 or 6 of us get it. This means annual lung function tests and echocardiograms are essential to monitor for that.
This post and comments are so helpful to me as well because my renal function has also declined and I have +2 microscopic haematuria usually when tested despite no infection. I have Sjögren’s - which can lead to CKD for some whether seropositive or not. So I was focussing a fair bit on this until I saw a Sjögren’s expert rheum in September. She added LCSSc to my list due to 3 out of 5 CREST and a nucleolar ANA and a weakly positive To&Th antibody.
She said that my main risk was pulmonary arterial hypertension rather than renal involvement. Due to late onset Raynaud’s and Erythromelagia I’ve been attending the scleroderma clinic for 3 years and no one had ever tested me for PAH - just neurological stuff. She said that my declining e-GFR was likely my mild hypertension and ageing as I’m now 57 - also prediabetic.
So what you are saying makes complete sense from what I have recently been told. And at last I’m being taken seriously and monitored for the vascular stuff not just the neurological issues.
Hi Missymoo, I am recently diagnosed with lcss, and have had low kidney function for a while. As it's believed I've had lcss un diagnosed for a while I was concerned they are both linked. I've been assured that (for the same reasons as you) it's more likely to be linked to blood pressures.
We pick up so many issues that it's difficult for us to know what symptom is attributed each condition. Newly diagnosed I'm hyper vigilant to anything and everything, fortunately I have faith in my consultants, that being said I always need calming after receiving and dissecting letters following consultations. It's such a scary condition. Take care.
If it was my letter I would feel that the person concerned knew what they were talking about. Your Rheumatologist seems to have a really good grasp of the issues related to renal function in someone with your type of scleroderma. They are completely right that it is more unusual to have renal involvement with centromere profile, and that usually things go 'tits up' pretty quick. They are also correct that if there were no other abnormalities in terms of blood or protein in your urine then the issues with renal function may well be more linked to blood pressure. They are advocating treatment and monitoring of BP, which sounds a good plan.
In addition, they are not saying that there are no issues, and they are suggesting that further urine monitoring continues, and that you could have an ultrasound to check kidney size and structure. I think that is a fairly comprehensive treatment plan.
There is obviously something you are worried about though. Tell us what is it that you don't feel reassured by or disagree with? Is there something specific in that letter that is bothering you?
I suppose I’ve had so many issues with not all, but some NHS professionals. My diagnosis wasn’t picked originally, I have to chase my annual lung function tests and heart scans, already overdue because I haven’t chased. This is why I’m always unsure about things. Thanks to this group I’ve been reassured so thank you!
The hypertension thing is another thing to worry about, I’m 42, slim, regularly go to the gym and eat reasonably well, just wasn’t expecting this. My BP has been high the last few times and again makes me wonder why the Drs/nurses didn’t flag this up earlier. I know I’m extremely lucky not to have major organ involvement, I thank my lucky stars everyday for that, but am worried about my declining health,
Thank you for your reassurance, I really do appreciate it.
I have limited cutaneous systemic sclerosis too and I would take reassurance from the letter as it does sound as if your condition is being taken seriously and monitored well. As others have said, it’s easy to blame everything on the condition. I am very stiff and have achey joints which I felt sure was linked to it, but I have recently been reassured that it’s more likely to be linked to the fact that I have a disordered breathing pattern (mainly caused by stress and hyperventilation) so oxygen is not getting into my muscles etc. I do have the start of pulmonary hypertension but I am being monitored for that. I think we need to take comfort from the fact that we are being regularly monitored.
My main reason for responding though was regarding blood pressure. I am 65 and have had high blood pressure since I had my eldest daughter 32 years ago. It’s monitored and regulated by medication but it’s often high when I go to see my GP or at clinic (white jacket syndrome). I have a home blood pressure monitor and when I am due for a check up I take it at home for a seven days and keep a record. I do it twice in the morning and twice in the evening and chart it. Then you work out the average over the week, but omitting the first days readings. It’s a good way to keep an eye on it and I take these readings to my GP. I only do it once a year now. Don’t know if this might help. Also reduce salt! Good luck with it all but it does sound as if the consultant knows what he is doing. Occasionally they are not on the ball so it does pay to keep an eye on what tests you are expecting. Some results when astray last year and it was only through my chasing that it was discovered that they hadn’t been sent to the consultant.
I am not knowledgeable but I had a problem with my renal functions. I was administered several BP meds. They have now been reduced. However, I couldn't get my creatinine levels to where my doctor wanted no matter how much water I drank to flush my kidneys. There is a bottled liquid tea that my friend told me to buy. She said to drank one hot cup of 2 TBSP tea in water per day for 5 days then only one cup for a week for 3 weeks. My doctor was amazed that my levels came down. Now I only drank a cup when I feel a slight back discomfort. The tea is Pappy's Sassafras (liquid concentrate) Tea. It is void of the harmful carcinogens found in the herbal store bark leaves. It comes in a bottle and I found it in the tea bag area of my grocery store. I trust in your doctors' care as I do mine. I continue to take my BP meds so it may be coincidental that the levels corrected but I still attribute the tea as it has worked for others. Feel better soon! P.S. I live in the USA and the store is Kroger's
My renal tests fluctuate depending upon how hydrated I am. When I am drinking the recommended 8 glasses of fluid per day, my kidney function is improved. Even though I do not normally have high blood pressure, my rheumy has me on a low dose of lisinopril. My scleroderma profile is similar to yours. I have been diagnosed about 18 years, with raynauds for over 40 years.
Hi missymoo. Could you ask your GP to refer you to a scleroderma clinic or a consultant that has a particular interest in Scleroderma? Dr Derrett-Smith previously worked at the Royal Free in London and is now at QE Hospital in Birmingham. She's the best Dr I've ever had.
Scleroderma is complicated and variable. It's always more reassuring to have healthcare professionals that are well informed on Scleroderma!
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