Crest

I was diognosed with Crest Syndrome 2014 😒 My symptoms change every day. I'm not sure if it is Crest that is causing - hair loss - eyes stinging - painful fingers - pain in left thigh knee and ankle - severe fatigue- breathless- lots of problems with teeth (fillings ) dry mouth -bowel problems . I don't go to see my Rheumotologist till end of July . should I see my GP ? I'm on Adalat Retard for Raynaud's should I be on any other meds ? TIA

9 Replies

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  • Yes symptoms change everyday. It's all possible in my experience and it needs planning. I would see the GP and the rheumatologist with your list of symptoms.

  • Thank you, I will make an appointment with my GP ASAP .

  • Hi, I agree, I tend to have all of those symptoms most of the time. It is a very complicated condition, go see your GP and discuss your meds.

  • Thank you .

  • You have my sympathies. I think it would be helpful to let your GP know what's going on, but whether they understand the complexity of CREST is another matter. If they don't, it might be an idea to 'phone around to see whether there are any local GPs who have an interest in auto-immune disorders, as this can help with their understanding you. If there is one, you could book an appointment and if all goes well make a transfer. I would hope your rheumatologist will offer you some more medication. I am on Methotrexate (15 mg/wk) to stop auto-immune flare-ups, Sildenafil (50 mg daily) to stop Raynaud's, Prednisolone steroid (5 mg daily) to stop muscle weakness, Lansoprazole (for gastric problems), folic acid; these have stabilised and leveled out my symptoms, thank goodness. I hope some similar cocktail can be arranged for you.

    Best wishes, Tim.

  • Thank you 😊

  • Hello there, you do sound like you are having a hard time. It is excellent news that you have a Rheumatology appointment at the end of the month. make sure you write a detailed list of exactly what is happening and then you can give it to them when you go in. When I have appointments I forget half of the things I need to say!

    Regarding your symptoms the hair loss can be due to auto-immune conditions but is usually only seen in Lupus, it can be a side effect of some medications but I am not aware that Adalat does this. If you have dry eyes it is likely that you have dry eyes and this is likely to cause the stinging eyes. Do you have any eye drops for them? RE. the dry mouth, there are a number of things that might help. There are saliva pastilles, glandosane spray and biotene gel available that might help. You may need your GP to presecribe the first two. Some people find chewing sugar free gum helps but if you have dodgy fillings that is not a good options. When you have a dry mouth then the protection that we all get from saliva to help keep our mouths clean is lost so it is really important to see the dentist four monthly, and religiously floss/interdental brush and clean your teeth at least twice a day, and ideally floss to get rid of any food in between times. An alcohol free mouthwash can also help. Biotene do one for dry mouths. I find the most helpful thing to do is carry a bottle of water with you and regularly swill a little around your mouth. Re. the breathlessness have you had any lung function tests? Or a recent chest Xray or CT? Re. your bowels, I think that Adalat can cause constipation in some people, which when most people with scleroderma have a tendency to constipation is not terribly helpful.

    The term CREST is a bit of an outdated term that just refers to a pattern of symptoms that usually come with Limited systemic sclerosis. C refers to Calcinosis, which is the chalky deposits that are usually found in the fingers (and sometimes elsewhere like the elbows, knees, eyes or face), R - is the raynauds, E - oesphagitis, it is an America acronym where they spell it with an e. It refers to inflammation and problems with the normal movement of food in your oesophagus, S - is sclerodactylly which refers to the thickening of skin and tapering of your fingers and T is for telangiectasia which are the red blood vessels that are usually seen on the hands, lips and face. They can also occur internally, for example in the stomach.

    I hope some of my long winded ramblings helps. Everyone who has these conditions is an individual and it is important that your Consultant knows what is normal for you, as well as what can come from this disease. I would get some up to date bloods done prior to your Consultant appointment so that they know the state of play with your health. I would probably ring the Rheumatology department and see if they could generate you one as the GP may not know what to do. Do you have a specialist nurse you can talk to? Or otherwise I would ring the Consultant's secretary, say you are having a flare and think it would be good to get some bloods for your forthcoming appointment and see where that gets you.

    Good luck. All my best

    Lucy

  • Although early in my journey with this disease, (diagnosed early last year but have had symptoms for a lot longer, just didn't get them checked out very often) I consider myself very fortunate in my GP. His mother in law had limited SSc so when I went to him and said 'I've had Raynauds for years as well as reflux and swallowing problems and it all seems to be getting worse, I've read somewhere they could all be linked, what do you think,' he reached a provisional diagnosis in 5 mins, having noticed my puffy fingers and the telangiectasia on my face. He immediately ordered bloods and then referred me to a rheumy as soon as they came back.

    So I've been seeing the rhuemy roughly quarterly and having the usual screenings and bloods, but like you, I'm never sure whether to see my GP in between. For example 6 months ago my bloods came back low in iron so my rheumy ordered a full iron suite of tests for my next bloods. I had been told to get samples taken about 3 weeks before my next quarterly appt so that's what I did. Those came back low iron and ferritin so we're now booking me in for an endoscopy and possibly colonoscopy to check why. But I'm not seeing her again for another 8 weeks. It's the long timescale between these things that is beginning to concern me. If I didn't have SSc and had gone to my GP feeling tired, with brittle and ridged nails I'm pretty certain he would have got to the same stage of booking the exploratories a lot quicker not over a period of 6 months. Similarly I am getting calluses on the soles of my feet which are getting quite sore and normal efforts to pumice off hard skin are not working. Rheumy has booked an orthotics appt for insoles as my arches have fallen and I will be going on mycophenalate when I next see her, not yet because I've just started sildenafil and she didn't want them both to start together (understandable). But she says the immunosuppressant can take 3 months to really get working so that means my calluses will get no better before then. So I've decided to go to my GP anyway, time we had a chat and a lot of this is about treating common symptoms and maintaining mobility and dexterity and reducing chance of infection, which any GP should be able to do. I suppose we must remember that although many of the sundry issues probably are due to our disease, they may not be, so we need to get them seen sooner rather than later. It also really frustrates me that I don't get to see things like my blood test results. Being a livestock farmer I normally get all my cattle test back and can look through them, research what they mean and discuss with my vet - I am treated as a professional. I know more about the health of my cows than myself - my rheumy just says 'oh your iron is low, let's look at that with another test' ad when I mentioned it on the phone to my GP he said 'how low?' to which I don't know the answer. However, I understand that he should be able to access the lab results too, so I am going to ask him to talk them through with me properly. It's just frustrating that as they weren't ordered by my GP they don't go on the GP records that I can access and the same applies to everything else - PFTs etc.

  • Lab tests are often not transmitted in full between hospital and GP, or between hospitals, so you the patient need a copy! You may need to insist.

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