New to forum, Hi advice needed

[Trustvolunteer]

Hi first time here. Can anyone suggest a good rheumatologist in the North West. I'm under Mccabe at Withington in Manchester. I'm really struggling with gastrointestinal issues, worried I might become incontinent. Life hugely affected because of this. Its taken over from everything else, The painful swollen hands and feet, joint and muscle pain and severe breathlessness and cough still scare me but hey shitting yourself in public is my main worrys. I remember when I worried about the veins coming up all over my face and them being disfiguring, seems almost funny now. I told my rheumy about this and he just said maybe my gp could prescribe immodium. It was the 3rd time I've seen him and he still hasn't confirmed diagnosis of scleroderma, just suspected.

I'm still waiting for a nail capillary scan, was referred for that last july, when I first saw him. I have deteriorated quite rapidly since a big flare up just before xmas. He's referred me for heart and lung scan (sound like Darth vader). Currently not on any medication, gp tried me on nifedipine but I just got awful chilblains and preferred numb hands so came off it.

Having read other posts I'm very concerned that being told to ask my gp for immodium is not an acceptable response. Am I being overly critical.? I did some blood tests earlier this week that showed kidneys generally in good shape but my potassium was 5.3. I know this because I can access my results from app online. I've managed to get gp appointment for Monday but not sure what I should do. Should I ask to be seen by a gastroenterologist?

Sorry for rambling post

[Trustvolunteer]

Forgot to say I'm centromere positive and have raynauds. Had really bad finger infection required hospital lancing and long course of antibiotics to shift it last year. Also forgot I have small hard white lumps that come up on my legs, they don't hurt but don't look pleasant.

Hands are knackered

[Broseley in reply to Trustvolunteer]

Hi, I'm sorry you have not had any replies. Maybe try the lupus page which has more members. My husband has been under investigation for 2 and a half years for his issues. His Reynauds is very severe- his fingers go black at any temperature lower than 18 ⁰C! Nifedipine didn't work, amlodipine made him dizzy so rheumy took him off all meds. I got him some thinsulate gloves which he says help. After spending all his money going private because the waiting list was so long, he had loads of tests at Nuffield Warrington under a woman Dr there who specialises in lupus but money ran out so she referred him back to the NHS. The GP accelerated it and he is now at Chester. He has had CTs, MRIs and a nailfold capillary test and a gastroscopy. Nearly 3 years down the line he has finally been put on Lansoprazole but nothing else, even though they found a lung nodule and secondary Reynauds.

So no, I can't really recommend anyone in the North West! Just keep pushing. Good luck!

[Trustvolunteer in reply to Broseley]

Thank you so much for replying Wrote the post when I was feeling pretty desperate. Trying to stay positive

[ArthurFoot]

I don't know about the NW but you have the right under the patients charter to ask for a referral to London to the Royal Free ... best thing I ever did. In one consultation they answered all the questions I'd been asking for years! Seriously it would be well worth getting on a train! I am in the SW and was under a scleroderma specialist at Bath .... moved to the Royal Free ..... the difference in standard of care is enormous.

[Trustvolunteer in reply to ArthurFoot]

Thanks so much for advice, will speak to GP on Monday

[ArthurFoot]

You may need to be fairly insistent that you want a referral to a scleroderma specialist .... my GP did everything she could to dissuade me .... but under the patients charter you are entitled to request a referral to a specialist anywhere in the UK. I have been told that Leeds have a good scleroderma team if you'd rather be North but it's only 2 hours on a fast train from Manchester Piccadilly to Euston and affordable if you book in advance .... it kind of depends where you live. Good luck.

[Trustvolunteer in reply to ArthurFoot]

Thanks again for. advice. Will push for London

[ArthurFoot in reply to Trustvolunteer]

Just think when they eventually finish HS2 it will only take 55 minutes from Crewe to London!

[angelahook]

HiI used the SRUK site to find a rheumatology consultant by me. In the manage Scleroderma section you can choose consultant type and area. Choose from the list and ask your GP to refer you to the chosen consultant.

I did this and have been really happy with my care. I was lucky that my original telephone appointment was with a locum. The consultant I have is affiliated to the Royal Free which gives their advice but it saves me having to go to London.

Good Luck

[Trustvolunteer in reply to angelahook]

Thank you for advice, hopefully discuss with GP tomorrow

[AJOC4]

I take Nifedipine for Reynaulds. If I miss a dose I get painful blue fingers so am keeping up with it. I get calcinosis and sores on my fingers that have been infected too but not sure whether it is linked to nifedipine or more Reynaulds. I have been referred to Systemic Sclerosis clinic because my condition got worse over Covid and I’ve suffered SSc for over 10 years but diagnosed about 7 but am told it will be a long wait. I used to see a rheumatologist every 3-6 months which stopped re COVID. Only just back with rheumatology. They want me to come off steroids but not offered me replacement therapy and am worried about lung involvement now. Awaiting tests.

[Trustvolunteer in reply to AJOC4]

I hope the wait isnt too bad for you. What steroids are you on,an have you been on them a while

[AJOC4 in reply to Trustvolunteer]

mainly skin thickening and joint pain at first and was on Kenalog injections every 4 months but wore off after 2 so asked to go on aPrednisolone 5 mg daily tablet. Works but not good long term re bones etc

[Trustvolunteer]

Saw new GP today who was brilliant. My wife helped me get across all the points I needed to.I phoned the scleroderma helpline and they recommended I ask to be referred to consultant at Sheffield scleroderma service. The GP happy to do this but given present situation and timescale involved will sort out local tests to check heart , lungs and kidneys and GI tract. Just felt relieved that she listened and prescribed new medication for the Raynauds.

[Clangerscat]

so pleased to hear this. A good relationship with your gp makes everything so much easier. Good luck with the tests I am in the middle of same sort of thing but have had a fantastically supportive gp.

[Trustvolunteer in reply to Clangerscat]

Thanks for your good wishes. I hope things go well for you too. I think if I can stay positive then I can cope with most of my symptoms. I just think this latest flare up has,really knocked me for six. I got upset the other day as my fingers were literally feeling like the skin was made of tissue paper. Even holding a phone started to cause a sore where it pressed into the fingers....just ridiculous 🙄. Some great advice on here about wearing gloves almost 24/7, until hopefully this flare up passes. Gel insoles in shoes has been a game changer as well. In themselves only little things but made a massive difference. Using moisturising cream for hands and face for the first time in my life!Thanks again and really hope things improve for you

[Clangerscat in reply to Trustvolunteer]

Don’t forget to moisturise your feet as well. I have been fortunate enough to be able to stop work as my morning routine including stretching and moisturising with gentle massage takes me forever 🤪. Worth the effort though. Stress is such a factor in health as well and I find stomach and gut is the first thing mine hits. Be gentle with yourself.

[kimmo]

Hi, just read your post and sorry you’re going through it at the moment. I have been under Professor Marina Anderson and her team at Aintree University Teaching Hospital for the last few years, since moving back to Lancashire from Yorkshire. Prior to that I was under Dr. Del Gado i Leeds. The team at Aintree are lovely and specialise in Scleroderma and all autoimmune conditions. Highly recommend them. I was there on the 3/2/23. Hope this helps 🥰

[Trustvolunteer in reply to kimmo]

Thanks for your good wishes. Referred to Sheffield now. The scleroderma helpline suggested them. Not sure how long if will take but at least the ball is rolling. I hope your symptoms are manageable and not stopping you from living. Many thanks

[positivedaybyday]

Sorry for the delay in replying as I've been away.I've have been under Prof Herrick's team at Salford Royal since 2017 & can not fault them.Prof Herrick has semi retired but her team are excellent.

I was referred to the Royal Hallamshire in Sheffield under Prof Snowden as my case was really severe & I had successful stem cell treatment in 2018.

Both teams fantastic! Good luck.