Pre Scleroderma Confusion

After alot of back and forth I have recently been told I am "pre-scleroderma" whatever that means. The rheumatologist wasn't exactly clear about any of it and the reading I have done is just confusing me more and more. Can anyone spell it out simply for me please...

I originally went to the doctor with painful joints and the fact food (mostly bread) kept getting stuck in my throat which was scaring me. I did have a couple of red disc like patches on one leg they seemed very interested in which disappered after a couple of weeks.

Recently I have an awful itch all over but worse on my forearms - my liver function blood tests were normal. I have severe stomach cramping and foul smelling diarrhea about 30 minutes after any "normal" size meal and am having difficulty losing weight despite diet and exercise (gained 3 stone in past few years due to contraception which is now stopped).

I apparantly am: ANA+ve, La+ve, ACA+ve, PASP 33mmHg

I apparantly have: SICCA symptoms with a normal Schirmer's, a normal salivary flow test, a normal salivary gland ultrasound, and a normal biopsy. Dysphagia with a normal barium swallow. Obective evidence of Raynaud's on thermal imaging with  a normal capillaroscopy.

Medical history includes: Asthma, Mitral & Tricuspid Regurgitation, IBS, Reactive Hypoglycaemia, and Hiatus Hernia (found during barium swallow)

Regular Meds are: Salbutamol, Budesonide, Omeprazole, and Fexofenadine (allergic to dogs/horses).

Thank you for any help. I just want to know what to expect :(

25 Replies

oldestnewest
  • I suggest that you contact your specialist nurse who will be able to your questions.

  • Sadly there is no Specialist Nurse, I have only ever seen a Consultant, and as I said he isn't very good at explainations :(

  • I think there's a specialist nurse phone number at Bath hospital that I think anyone can call? Or you could ask to be referred to a scleroderma specialist centre for a one off consultation so someone can explain things a little better? 

  • Bath is a fair way away but yes I think I will start looking for a specialist to see if they can advise. Thank you

  • You will find sister in the clinic you go to will help .just phone your clinic ask for sister it will most likely be  answer machine leave phone numder she will most definitely get back to you I find this most helpful .I hope this helpful 

  • Hi - I'm not sure where you live but if you can travel I would strongly suggest you get your GP to refer you to the specialist scleroderma team at the Royal Free Hospital where you will get the reassurance you need, and where there are specialist nurses who will speak to you whenever you have a concern.

    Good luck, you'll feel much better once it's all been explained properly.

  • Royal Free is London yes? that is a fair way away but yes I think I will start looking for a specialist to see if they can advise. Thank you

  • Yes sorry the Royal Free in London.  Best of luck to you.

  • Were is the Royal Free hospital plz

  • Sounds like the good blood tests have picked it up . Like it did me . With me i had reflux  and food like bread got stuck ( keep water by you )  No other signs which might mean you might delovop  a slower scleroderma  . 10 yrs on . You can now see if have scleroderma  . . It's come on slowly  . 

  • You may had the very good blood tests that's picked it up . Like me i had reflux  and a bit of food got stuck . I can track that back 14 yrs  got bit of joint . Also have Rhumeatiod  . My scleroderma  has developed  slowly  over 10 years and you now can see it have it . It does  not give me real problems  mouth is starting  to get tight after 10 years . . So live life to full as you not showing  anything yet and might not for a while .

  • That makes sense, the blood tests might have picked it up before I become symptomatic (hence PRE scleroderma), hopefully I have a good long time before any symptoms kick in to badly.

  • Hi  there is also a specialist team in manchester at salford royal and manchester royal  hospital prof ariane herrick and her team hope this helps

  • Getting closer to home lol

  • Mine 10 years  in . Has come on very slowly.  . I feel well and still very active  at 63 . . When some younger  friends  want to put feet up . I actually  do more then them sometimes 

  • There is also Dr Derret Smith at the QE Hospital birmingham- she used to work under Professor Denton.

  • Thank you

  • Thank you for all the suggestions, I am in Newcastle, which seems to be the only place without a specialist team lol

  • Hello im in Newcastle too , do mind if I ask where your consultant is ? I have just been reffered to the regional centre for excellence at the freeman hospital and although I havent seen my new consultant yet (app next month) I have heard they are very good

  • I answered this yesterday from my phone but it seems it didn't go though :(

    I see Dr Pratt at the Freeman, and I believe it consults Dr Griffiths if he needs advice. He's pretty thorough test wise, and never rushes me, I seem ok when I leave but by the time I get home I realise I don't understand alot of it and probably should have asked more. Hopefully you will see Dr Griffiths herself. Good luck.

  • Hello there thank you for the reply :) I was diagnosed lasy year and have been attending my local hospital in morpeth but in my rhuemy in her own words " had never come across scleroderma before and didnt know what to do with me !" So reffered me to dr Griffiths (or one of her colleagues as my letter says). Im really hoping for some answers and alternative treatment as methotrexate isnt working for me at all and the side effects are awful. On a side note its lovely to speak to someone local whos got the same docs/concerns as me feel free to inbox me and let me know how you get on :)

  • Hi there, we asked Professor Chris Denton for his expert opinion on the term 'pre-scleroderma' and we've posted his response on our website, hope this is helpful: sruk.co.uk/find-support/new... 

  • That's brilliant thank you, it explains alot, and gives me new questions to ponder lol

  • I was told Dr. Coughlan From the Royal Free went to Bath for consultancy once a week

  • I was diagnosed with having scleroderma by only having positive bloodwork and acid reflux, which causes spasms. I don't have raynaulds or skin involvement.  And I'm glad they did as my tests show I have borderline pulmonary hypertension, so I'm checked every year to see if it progresses. This disease is so complicated and we don't fit under neat labels.  If that makes sense.  I seeked out a specialist (only one in Scotland). And that's the clinic I made my doctors send me to through the nhs.  They argued with me saying the couldn't as it was in a different distract and it looked like I didn't have scleroderma,  but after reading what this disease can do to us. There was no way I was taking no for an answer.  Good luck in getting a specialist.  

You may also like...