After 2 years of waiting for the NHS, paying out thousands for private consultations and tests, only to be referred back to the NHS and have all the tests done again, hubby finally has a diagnosis after having a nailfold capillaroscopy. Systemic sclerosis. We're now waiting for a follow up appointment with rheumatology. All this time, he's had no treatment except some pills for his facial rash and lumps and some pills for his Raynauds that didn't work . GP thought it was POTS. I thought it was lupus. He has a nodule on one lung but no other internal issues except his usual digestive problems and back pain. He's had these symptoms ever since I met him in 1987, but after his covid jab they got worse to the point that he had to give up work.
Just a pointer for those trying to get a diagnosis. Persistence does pay off - eventually!
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Broseley
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Sorry to hear that your hubby has been diagnosed with Systemic Sclerosis, I’m still waiting a diagnosis so know how you are both feeling. Horrible that he has SSc but thankful that he has finally been diagnosed. Hopefully he will receive treatment and you can both move forward, finally knowing. Thank you for posting this sad but also uplifting post, gives me hope to keep persisting.
I wish your husband and you all the best for the future.
Thanks Bkart. I think it's a relief to have a diagnosis after all this time. He only seems to have it mildly, but the covid jabs always make him ill for a week. He hasn't had the autumn booster yet...
He's learnt over the years how to pace himself and friends just have to accept that he can't keep going like everyone else. Mind you, neither can I these days with my PMR/GCA! But he's only 54 whereas I'm retired and 63.
I'm so glad that you finally have a diagnosis for your husband. Your persistence has paid off. It's been very very difficult for anyone who is after a diagnosis with the Covid situation causing havoc worldwide.
Systemic Sclerosis is SO complicated as each individual has unique symptoms & has such a wide differential in severeness.
The main thing for you both of you is finally gaining a diagnosis, as you say the relief of this is phenomenal.
Now your journey begins as you await referral to a Rheumatology team. Let's hope your appointment is fairly soon.
In the meantime keep a daily diary of your husband's issues both physical & mental no matter how insignificant some may appear as they all help to build a picture
Make a list of questions you wish to ask as this helps you gain a better understanding of where your husband's disease is at & what help maybe available to you both.
The hospitals have a range of pamphlets on how this disease can affect different areas of the body. Ask for some & keep these in a folder for reference. Bear in mind the symptoms in these pamphlets don't affect everyone as its all down to the individual & severeness of the disease.
Trust in your team to find the best way forward to help your husband.
Good luck with your journey, we're all here for you to support you both. Xx
Thank you so much for your kind and helpful comments.
He saw a rheumy privately as although the GP referred him due to his blood test results, during covid, the waiting list was 2 years. We waited 6 months before finding this out. He had CT, MRI, XRays etc but when they found a nodule on his lung he was urgently referred back to the NHS as our money had run out. 6 months later - his records were lost by the GP surgery - he then had all the above tests again (why?) plus a PET scan and a lung function test. They found the nodule to be benign (phew) but he has to go for repeat tests every so often. He was also referred to rheumatology so he has seen him once, and was referred for the nailfold capillaroscopy, but the last appointment had to be cancelled and he hasn't had a new one. I expect I'll have to chase it - again!
It's very difficult and the situation and response times can be so variable. I remember reading that most GPs might only see one case in their careers - if that - so try to go easy on them if we often feel we have to be the experts.
Two things to add/ suggest - I too have low blood pressure, but had been on Nifedipine in the winters for years - (Make sure it is Slow or Modified release!!! GPs often miss that asa they are used to prescribing it for blood pressure). I just had to accept that for the first week or two each autumn I would have great headaches and feel giddy. But I adjusted. Then once I was a LSSc diagnosis and the Royal Free got involved, I was also put on Losartan Potassium (year round, upped in the coldest bit of winter) which doesn't seem to make so many problems with the low blood pressure. And I had a phone consultation with the Royal Free on Thursday - he said that if I need to go up a level, my GP could try either fluoxetine (which I think is prozac - not keen on that as I had a horrible night terrors reaction to an anti depressant for menopause once!) or sildenafil (which is viagra) - people on here report sildenafil not having the blood pressure impact, I think.
Secondly, I have mild disease and mild lung involvement. My response to that was to do loads of deep breathing exercises daily - I figure if the lung capacity might deteriorate over time, at least I'm going to have them in as good a condition as I can to start with. So I practice breathing right into the back and sides of my ribs, as strongly as I can, as weak as the upper chest (the lung even go up under the clavicle, so don't forget there either!) So when I had my lung function test, yes the transfer of oxygen into the blood was a bit low, but the force with which I could breathe in was super impressive - and balanced it out.
I hope you and your husband find the help and ideas you need. Also, because of your post I've discovered the PMR forum, which might be helpful for my mum - so thanks!
Thanks Lady Trundle. The PMR forum is well populated and has some brilliant experts on it so I would recommend it highly.
Hubby was put on Nifedipine some years ago just to treat his Raynauds. Problem was, being a man, he doesn't like taking drugs and didn't want to take it all the time as he's OK in the summer. So they said to take it as and when needed, but it didn't work in that respect at all. He took his amlodipine for the first time today so we'll see. The idea of lung exercises is great, thanks. I'll try to get him to try it!
While I'm sorry that your husband has been diagnosed with systematic scleroderma, I'm glad that he can now get treatments suitable to his conditions.
My sister was diagnosed with scleroderma early 2020, and the road to get that diagnosis was filled with doubts, confusion and frustration. While recovery is progressing slowly, we're glad that we are on the right path.
Prednisolone (5mg, after process of gradual decrease over months )
Methotrexate (10mg)
Cellcept (1 tablet, after diagnosed with slight scarring at the lungs)
Calcium (1 tablet)
Vitamin D (1 tablet)
Fish oil
The biggest game-changer is definitely the methotrexate, but it comes with its side effects.
The fish oil is a personal add on - my sister believes it really helps with alleviating inflammation, which has been a big issue with her condition. It's also very important to keep up with exercise that is suitable to their condition - with a lot of bedrest, mobility and strength could be an issue.
Wow, thank you for that! It's pretty much the same as my treatment for PMR/GCA then, though I'm not on methotrexate....yet, or cellcept. I also have to take alendronic acid to protect my bones. I take fish oil too and loads of other supplements including turmeric and alpha lipoic acid - also good for inflammation and your blood sugar, which can be affected by pred.
I’m not sure if this helps much, but it may be a distant light at the end of the tunnel. There is research going on, and there has recently been a large research grant added into how to reduce the amount of time it takes to diagnose by helping GPs with a way to spot early signs, and perhaps even find a cure.
I saw Rheumy yesterday as I’m part of the research. I see them every three months, have multiple bloods taken every time and a pulmonary function test, arm MRI and echocardiogram twice a year. As of yesterday, they’re extending the research to taking skin punches too. Much of all of this is thanks to joint work with the US.
I have no idea if my agreeing to take part helps me in any way, other than a certain comfort in knowing any progression in my condition will be spotted early. I’m very pleased to contribute and it’s fascinating to encounter the dedication and, at times, excitement of researchers.
Anyway, that’s an update in what’s going on at the moment.
Thank you! And thanks for doing your bit to help them spot SS more easily. Hubby has an appointment on 16th with rheumy so hopefully there will be some positive news, and maybe some treatment!
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