Hi - this is just a curiosity question: I get monitored fir Mycophenolate 3 monthly. A long time ago I was misdiagnosed with Rheumatoid and this was due to high ESR and raised CRP with swollen hands. The rheumatologist ignored other symptoms and signs such as sudden onset of Raynaud’s and sicca and it took my then GP to identify and treat these.
For years, even after diagnosis changed to primary sjogrens, then MCTD/ overlap ctd my inflammation and other blood tests were elevated. Now I’m definitively diagnosed with antibody positive systemic sclerosis and get Mycophenolate, Iloprost and Losartan amongst others. Most of my problems are in stomach and lower GI. I’ve lost a great deal of weight unintentionally and gone from obese to low end of normal range for height and age.
Due to shoulder and elbow pain my GP tested my inflammatory markers CRP and ESR along with the usual monitoring and all came back entirely within range. She gave me print off and also gave my my rheumatology bloods from 6 weeks ago. Everything normal range then go. This is first time I’ve ever had entirely normal blood-work- particularly inflammatory markers. We decided that my pain must be nerve related from either post herpatic shingles or degenerative discs in neck - or possibly both.
I do feel this makes sense but I also know that I’m getting worse Raynaud’s attacks and have a few more of the red T spots on my nose, cheeks, chest and hands . I do have yearly lung function tests and all within normal range so far. But I haven’t had an echocardiogram for 2 and half years or more. Apparently all SSc patients here are waiting for longer due to chronic staffing shortage so my rheumy said to just let her know if I’m symptomatic and she will mark as urgent but assures I’m on the list.
Someone here once explained to another member that the number of wee red spots indicate disease progression with limited cutaneous SSc and flag for pulmomary hypertension. I’m not breathless most of the time unless I’m really tired. But the scleroderma prof did explain in July that this is my main risk and said I should have annual testing - rheumy agrees but hands tied unless I’m symptomatic.
So I just wondered if getting longer more severe Raynaud’s and increase in red spots is more of an indication of disease progression in SSc than inflammation markers and other blood work all of which my doctors used to rely on most when I was formerly diagnosed with inflammatory arthritis?
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Might be, but obligatory not a doctor. Do you have a rheumy appointment coming up? I’d be inclined to bring up there; depending on how busy they are. I haven’t had ESR and CRP checks for some time, but seems they don’t do that (unless it’s part of the extra blood tests taken at rheumy visits) . My GP will have nothing to do with Systemic Sclerosis apart from the mycophenolate blood check.
I have annual pulmonary function tests and a heart echocardiogram which is standard procedure. Seems I’m fortunate in the postcode lottery.
Does your rheumatology clinic have a specialist nurse you could contact? Mine does, but warns of a 10 working day response.
Thanks dear LK. My rheumy is accessible to me by email because she prescribes me something directly - approved but off licence. So I can email her but already did this for latest prescription and also mentioned pain in shoulders and left arm and reminder that still no echo date - meant to be annual but now about 2 yrs, 8 months.
She replied same day saying see GP re loss of power in arm, nerve pain in left breast not the kind of symptom associated with pulmonary hypertension of SSc but thanks for letting her know. And my prescription now sent in.
I can only keep flagging up to her but clearly not symptomatic of PAH so I’m still going to be waiting. I’d much rather not have to wait to be symptomatic of course but spoke to another SSc patient having Iloprost next to me yesterday and she hasn’t had hers since pandemic either. Used to get it annually until then. Says her rheumy says shortage of staff is problem and says all her pain is Fibro. Makes me rather glad she’s no longer my rheumy tbh as I rarely moan about pain but discs are severely degenerated. But this fellow Iloprost patient isn’t symptomatic of PAH either and not on any immunesuppression but nor does she have the wee red spots on face or skin tightening - just Raynaud’s and GERD and severe fatigue. However it was really good to meet someone with SSc and we got on famously!
Apart from lack of echo I’m extremely well cared for and lucky to have a really good GP - although I think she’s a retired locum now. She has a relative with scleroderma and suffered herself from severe herpatic shingles when she was a young GP - was paralysed from waist down for 18 months. So she say normal blood markers show this is more likely cause of my precast nerve pain symptom too. Reason she added ESR and CRP this time was my suggestion in case shoulder and arm etc was PMR/ Vasculitis or other systemic inflammatory but clearly not and definitely nerve related with tingle and warm water sensation she says. X
I hope you get an answer somewhere. I’ve never knowingly met another person with SSc and very few people have heard of it. Still, this forum is a good find x
Yes my GPs are fab but about all my age so I’m dreading them retiring - one already gone. Saw a young trainee GP a few weeks ago when my upper back really kicked off but he was hopelessly pompous and didn’t introduce himself properly so I’m not too hopeful of future if he’s anything to go by.
I wasn’t sure about her diagnosis of shingles 18 months ago as has no blister rash. But she’s adamant it was and showed me her notes saying there was a red line running up my side under arm and into rear side of lower neck. I couldn’t see this but my husband says he could so I now think post herpatic shingles makes complete sense of horrible nerve pain surges I suffer occasionally in my left boob. The left side was a bit of a worry for obvious reasons though. She’s written note to my neurologist about this which is helpful although wish I had asked for shingrex vaccine as think Scotland is starting to book these for immune suppressed patients under 70s from January.
Oddly a nurse said more patients lately getting Iloprost but some stay on other ward for 24 hour infusions instead so I wouldn’t meet them. They offered me this option before but with shared toilet on mixed ward and my terrible veins I said no ta!
It makes huge difference with rare disease to meet others in person. Interestingly she was asked by another patient between us what systemic sclerosis and Raynaud’s are. She explained Raynaud’s and told her that SSc is a close relative of MS but much rarer and systemic rather than brain. I’d never thought to describe it this way but it seemed to make sense to the woman sitting between us both. Strange to be in a majority first time! X
Once again thank you for a very informative and for me very helpful post. Re the shingles, earlier this year I posted a question in that I was having quite severe pain and soreness on the left side of my stomach. As I hadn’t knocked myself, been stung and no bruising or rash I was mystified but was reluctant to see my usually unhelpful GP. Somebody kindly replied that it may well have been shingles as you can sometimes get it without the rash. I now think that is most likely what I had and this scenario has now possibly been verified, I do know it was hugely painful and sore to touch.
You also mentioned ESR and CPR inflammation blood markers. This set me thinking as I always seem to have low inflammation markers which is puzzling given that I am very symptomatic for inflammation i.e. pain, swollen fingers etc. I always wondered were my ESR results compromised by my taking Warfarin but doctors didn’t seem interested, no I couldn’t have an autoimmune disorder because ESR was low. A study by the Haematology department in Glasgow University Hospital concluded that Warfarin can lower ESR blood results. So thanks for indirectly pointing me in this direction.
With regard to MS being a close relative of SSc I’ve never heard of this, I thought MS was a nerve degenerative disease affecting the eroding of myolyn (not sure of spelling) between the brain and spinal cord and thus affecting the conducting nerve system throughout the body, which does not resemble SSc. Some symptoms may be vaguely similar but from a distinctly different cause and disease. Perhaps the nurse should make sure of her facts before giving out unreliable information or better still have asked you to explain.
You are so lucky to have a supportive NHS GP and hopefully that will carry on for you in the future. Like Lupiknits my GP does not want to know about SSc, I fail to understand this, if I was a GP I would welcome the chance to increase my medical knowledge and pass this on. My last surgery was a new GP teaching practice and they were the same, I think for some we’re just too much trouble with no financial gain.
Thanks Bkart. I know quite a few who don’t get much response to inflammatory pain showing in their bloods. I wonder if it depends which disease is most active or which aspect - or perhaps my CRP is always normal range now ie 0-10 because I’ve lost so much weight from scleroderma gut? I’m assuming the latter applies to me because my ESR (they switched to a more precise one called PV here when I relocated) was always so high when this all kicked off and I was therefore taken very seriously by GPs and the rheumatologists.
When I moved and it changed to PV and CRP the same thing happened and I was told I was hyperviscose due to raised immunoglobulins. Then, partly due to this, I was tested for lymphoma and myeloma and had a lip biopsy for Sjögren’s disease.
As soon as this came back very positive the rheumatologists just shrugged and blamed Sjögren’s saying PV/ ESR and CRP no longer relevant as markers for me as would always be high. But then I saw a Sjögren’s expert rheumy privately 4 years ago who said no this is wrong and got me back on Mycophenolate for this although she said I also had SSc. But nothing much changed blood-wise for a while and even then my CRP remained quite elevated until about a year ago.
Now, other than skirmish with portacath leading to sepsis earlier this year, my blood work has never looked so completely normal. So I feel as if I should feel normal too! And perhaps I do feel as normal as possible within the confines of being quite home and toilet bound due to damage done - living on a very restrictive, mostly liquid diet. Maybe all of this pain is just severe wear and tear in spine and ageing hypermobile joints?
I just wasn’t sure what my rheumy was looking for in September when she had my compliments and CRP included in my bloodwork again? I think perhaps these are specifically relevant to RA, Lupus and Sjögren’s patients but not so much a measure for systemic sclerosis? And her request immunology bloods were refused on grounds that they always show same high SSc antibody and +ANA and I’m diagnosed with SSc so unnecessary to keep running these every six months?! I’m on their side if so - it feels like she’s looking all the time for more antibodies for Lupus or Sjögren’s to suddenly show up. I think I’m going to have to ask her what she’s still looking for perhaps?
So I think it’s me who became over reliant on them over the decades of RA and Sjögren’s being my diagnoses and now systemic sclerosis is my main disease, these aren’t reliable or relevant? Perhaps newly positive nailfold capilleroscopy and little red spots on face and hands are the new guide? Or if I had these, ulcers and calluses and calcinosis other cracks and skin tightening etc would determine active disease?
Anyway I think you’re quite right that it’s how we feel that should determine active disease and guide our treatments. The SSc patient who said to other patient that SSc is close relative of MS (it wasn’t the nurse) was probably just thinking they both have sclerosis in name and it was her way of explaining this rare disease to an enquiring neighbour? In a way it made sense for me as I have a lot of nerve involvement as part of my Sjögren’s and my spinal disc degeneration. I didn’t contradict her of course. But I did later tell her about SRUK and she told me that my former rheumy has diagnosed her with Fibromyalgia as well and said that most of her SSc patients will end up with this to explain chronic pain. Apparently she pressed certain points in her spine to determine - which would have driven me nuts with annoyance! So I’m very glad to have my lovely Lupus/ Sjögren’s rheumy, who doesn’t di this sort of thing at all.
Finally re post herpatic shingles - yes! Mine is the weirdest surges of breathtaking nerve pain in my left breast. Thankfully they are extremely brief and the way I’d describe them is being like trigemimal neuralgia pain, which I briefly suffered, in the way it pulses intermittently. Thankfully it’s only occasional now and I don’t think it explains my tennis elbow which feels more tendon related than nerve. X
Forgot to say I think that your increasing symptoms are possibly more of a marker than ESR bloods, perhaps any of your meds or the combination could now be affecting the results, who knows. I feel that when symptoms are so clearly increasing this has to be possible, sometimes these days symptoms alone don’t seem to count. I feel they often rely too much on tests and not enough on actual symptoms, I wonder how they managed to diagnose without all these tests years ago. Of course they are important but together with symptoms which cannot be ignored.
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