Scleroderma & Raynaud's UK (SRUK)

I’m struggling :(

I’m struggling :(

I just want to break down and cry! I’m on no medication because I did not respond to the previous treatment my rheumy gave me! I went to see my GP last night and he said I have to wait until I see Dr John Pauling as he doesn’t feel comfortable giving me medication.... my hands are cracking open, ulcers, calcinosis !! I’m sad, I’m fed up, and I’m getting more and more impatient 😟

37 Replies
oldestnewest

Oh Jaz, I really feel for you, when do you see Dr Pauling? It’s horrible having all these weird symptoms. ❤️

1 like
Reply

Hey @winfield ... I hope your well, I havnt seen you on here recently?

I’m hoping that I am going to have an appointment very soon, my referral was sent to him on the 10th January! However, due to the fact I’m Welsh and Dr Pauling is in England, there was a massive problem with the funding from the welsh assembly! Long story short - Kirsty Williams who is my local MP got on my side and sorted that just recently so fingers crossed I’ll be seeing him in the next few weeks, I hope! Considering it was an urgent referral...! Stay warm 💙

1 like
Reply

Fingers crossed you have that appt very soon as you will feel much better about the condition once it's managed by a good specialist.

I've been having loads of tests recently and due to go into hospital next Thursday for 3 days of raynauds treatment. I'm expecting the test results then, so feeling a bit apprehensive of it all.

The weathers shocking and my raynauds is a nightmare. It's weird - all day I suffer from the cold then in bed at night a get really hot (not in a sweaty way) - a dry heat.

This condition gives us some really weird symptoms - joint and knee pain is this weeks newby :(

Look after yourself and take each day as it comes xxxx

1 like
Reply

Oh gosh! Do you have to be admitted for Raynauds treatment? It must be awful for you in the weather too...! Do you have sores on your hands / fingers ?

I’m so sorry your going through a lot too...! That’s bizarre you say that as I’m exactly the same! I’m cold, my hands, feet, nose and ears.... I get into bed and it’s like I’m burning ! As you said, not a sweaty hot..! Hot to touch, hot skin etc. Do you itch much ?

The cold won’t help joint and knee pain 😒 stay warm 💙xxxx

1 like
Reply

Stay strong hun have lots of hot drinks, indulge in the food u love I hope u get seen soon and avoid this terrible weather best u can ❤️❤️

1 like
Reply

Thank you @Kc_1411

I have been hugging mugs of hot chocolate for days now 😂💙🤗 my son and I have woken to knee deep snow! 🙄 stay warm xx

Reply

Hi JazPont, so sorry you are feeling so low. Please dont be scared, we are all here for you and although I am not with you I can assure you that you are in my thoughts. How soon are you seeing Dr Pauling, do you have a rheumatologist nurse that you can ring? In the meantime remember you are not alone we all feel like this from time to time. Remember smile and wave, smile and wave. xxx

1 like
Reply

Thank you @fairy56

I edited my post from scared to impatient. I guess confusion could fit in there nicely too 😂🙈 as I said above in response to @winfield1 , major issues with funding etc. However, this (I hope) has now been resolved so I’m hoping to receive appointment soon...! In fact, ima call Bath today to double check!

My rheumatologist referred me to Bath on the 10th Jan, and signed me off from under his care! For the last 7 weeks I haven’t been under watch by anyone! I’ve been given no advice, no support lines, no nurse advice contact, absolutely nothing! My GP is fantastic but he doesn’t have a clue about scleroderma and neither does my ex rheumy...! In fact, no one believes I have scleroderma, even though my rheumy has referred me to a scleroderma specialist 🤔

I was recently diagnosed with “severe, non-scarring Alopecia” all of my hair has fallen out 😢 I wonder why. Xx

Reply

So sorry this is happening to you. I'm shocked they haven't put you on cellcept or methotrexate.

1 like
Reply

Agnbg0826, I’m sorry too 😒

My rheumatologist put me on 40mg prednisone daily, reducing by 5mg weekly. He also put me on hydroxy ..... he put me on this medication because my symptoms were progressing, however we still did not have a diagnosis so he suggested we “try this for now” . 6 weeks later at my next appointment he agreed that I had not responded to the treatment whatsoever and they had absolutely no effect.

So, he told me to stop all medication and was not happy to prescribe me immune suppressents until I had been seen by my specialist xx

Reply

That's crazy. You have obvious signs of something going on.

Reply

Hi JazPont I have the same issue with my skin it tightened that my lips ears nose is all smaller than what it use to be. I have sores on my fingers where I get cut and don’t feel it until it’s infected my doctor have to cut the and affected tissue and my fingernails back so it can heal. I use nitroglycerin ointment on my fingers to help the blood flow to the tips of my fingers something I use it on my feet when they are so cold they feel numb. But my doctor doesn’t have me on any prescription drugs either

1 like
Reply

P.s - can anyone tell me if that is an ulcer in the top right picture? It’s on my hand rather than fingers , which I find bizarre!

Reply

Hi JazPont,

I feel sorry for you it can be very hard to get the right help.

If your GP lack confidence to manage you go to see them and give him/her this which is the EULAR recommendations for management i.e. the protocol Rheumatologists follow.

It should be clear enough for them to follow or at least give advice on symptom management- eg the protocol for ulcers &c. ard.bmj.com/content/annrheu...

1 like
Reply

@amd21 thank you ever so much, I have saved the link so I can print it off when next visiting the library and hand it to my GP at our next appointment, thank you xx

1 like
Reply

So sorry you've been left in limbo with no support - give Bath hospital a call today - ask if they have a nurse specialist you can chat to - and find out if they have your referral /appt.

Reply

@winfield1 - you are amazing !!! I am truly touched that you would do this research for me, I’m a lucky person 💙 thank you!!!xx

Reply

Just googled more and not sure if she retired last year :(

She sounded amazing - sure her replacement us just as fab - give them a call ❤️

Sometimes when it's someone else who needs help it's easier than looking for yourself xxx😁

Reply

Let us know how you get to on - we are all here for you xxx

1 like
Reply

I’m watching the clock tick, as soon as it hits 9am I’m calling them 🙈 thank you so much, you are an incredible person xxxx

1 like
Reply

@winfield1 - read my last comment on this thread , an update from today !xxx

Reply

Hi there, I would contact the hospital and ask switchboard to put you through to Dr Pauling's secretary to see if she can look on the system and find out when your appointment is. At least that way you will know how long you have to wait. Depending on how long it is you can then explain your situation (that might get you a quicker appointment) or ask if you can speak to one of the Specialist Nurses. Bath definitely has Specialist Nurse Practitioners.

All my best

Lucy xxx

2 likes
Reply

Thank you @lucyjean

I have been ringing Dr Paulings security on a weekly basis, since my rheumatologist referred me to him on the 9th of January, for an update and waiting time for my appointment with him. The problem is not the waiting time, Dr Pauling has approved my referral etc. However - because I am Welsh and I live in Wales, the Welsh Assembly are refusing the funding for me to be put under Dr Paulings care and be seen / receive treatment etc because he is based in Bath, which is England. Their reason being they do not want to give our “Welsh” money to an English hospital / specialist. They want to put our money into Welsh hospitals! This is my problem, and the delay in my diagnosis and treatment for this ever so rapid, progressive disease!!

My GP and my Rheumatologist are fighting my corner regarding the funding, and addressing the Welsh Assembly that there is no other option but for me to be treated in England as no where in Wales has a scleroderma specialist, and how essential it is for me to have the funding to be put under the care of Dr Pauling.

I rang Bath hospital today for another update and they have still not received the “go ahead” from the Welsh Assembly! I am unable to attend an appointment with Dr Pauling until they receive the money, in the meantime I just have to suffer in silence and pray the Welsh Assembly fund my treatment :(

I have been in touch with my local MP regarding the matter, she is helping me but still no positive outcome as of yet :( I actually E-mailed Dr John Pauling myself this afternoon out of desperation!! Explained my worsening symptoms and even sent him photographs of my skin thickening / Raynauds ect. He sent me a very quick response apologising about the situation and how it’s becoming extremely difficult to obtain approval to treat Welsh patients, he explained he is unable to give me advise on my symptoms until / IF / when I get to meet him in person. He did send me some great links though, I thought that was very decent of him and I was extremely grateful for his acknowledgment.

I have exhausted every single option possible to get me to Bath but I’m fed up of disappointment now :(

The worse thing is this - I am denied the funding I NEED for my condition, so I asked if I could pay to go private with Dr Pauling and that is not an option either as it’s through the NHS.

I’m running out of hope, I’m on no medication because I didn’t respond to the medication my rheumy tried me on, he signed me off from his care once he done the referral, my GP has no idea about SS so I am very alone in the respect of professional support and advice.

Thank you xxx

1 like
Reply

The sad thing is, I have worked my arse off all of my adult life paying my taxes and National Insurance !! I’ve never received anything from the government and never used the NHS until recently!! Now I am denied the funding I need desperately, after contributing my whole adult life! It’s not fair

Reply

This is shocking, I feel so angry and let down for you.

You know that funding hasn't been agreed up to yet from the Welsh Assembly - can you speak to your practice manager at your Drs surgery and ask who exactly you need to speak to about getting this sorted?

It's not good enough - what are the time limits ( e.g. Is there a panel that only meet so many weeks - if so when's the next meeting)?

- don't give up - you deserve better xxxx

1 like
Reply

Hope you don't mind, I've asked in a private scleroderma Facebook group if there are other sufferers from Wales and how they went on getting referred to a specialist in England re funding. Obviously no names given. I can remove the post if you want me to xx

Also the SRUK may be able to help if you call them -

sruk.co.uk/find-support/hel...

1 like
Reply

@winfield1

This is amazing !! Thank you very much 💙 have you had much response? I recently re-activated my FB and joined a few Scleroderma pages but I’m still not to sure what I’m doing 😂 xxx

Reply

Jaz I’ve found you on facebook and asked you to be my friend. If you add me as a friend I’ll add you to The scleroderma group and my post a- you can read the comments - you can delete me as a face book friend after if you want - the comments may be helpful xx

1 like
Reply

@winfield1 I’ve had no friend request ? I’m Jaz Ponting on FB xx

Reply

It’s Michelle Latham (Winfield was my maiden name) - I’ve sent it again x

Reply

I’ve sent you a message

Reply

My Husband is going through the same as regards to Funding he has worked all his life paid his taxes and National Insurance and yet he was denied PIPs. he is currently fighting the claim with the help of his GP and Doctors from Royal Free Hospital Hampstead, A big thank to Royal Free Hospital Hampstead they have been so helpful, supportive towards my Husband's Treatment. We take one day at a time he is currently battling with severe ulcers in his and legs.

1 like
Reply

@1234Yin

I’m sorry your husband is faced with this issue! It’s a bloody poor shame !! I’m glad he’s got some support from Royal Free Hospital, and of course yourself!

I am really saddened by all of this, regarding the funding I apparently need to enable me to be seen by the only person who can help me right now :( I am never one to feel bitter or resentful but just recently I have been feeling just that! I have been paying tax and national insurance my whole adult life! My field of work is helping people and “making a difference” to people’s lives and communities..! I’ve worked in substance misuse, helping addicts overcome addiction and helping communities “clean up” on street drug use. I’ve worked in Probation with the criminal justice system helping prison leavers into accommodation and reducing crime rates and homelessness on our streets here in Powys and Ceredigion... I don’t resent the people I have helped but I do feel let down by the welsh assembly when I have put so so much into our welsh communities, therefor helping the welsh government in finance!

Now I need help myself from the welsh assembly, I’m just a nobody and I’m denied the help I need. It’s a sad shame and I feel so let down xx

Reply

Hi Jaz, your story sounds rather unique and I am so sorry to read about the pain you’re going through - I wish we could help in any way - have you considered going down the private route with any other rheumatology doctors? I know when I was first diagnosed I went privately to get quicker answers and some piece of mind (I was also fortunate enough to have private insurance). The rheumatologist who saw me was actually very good and helpful despite no t on the list of the top Sclerodema specialists in the U.K...

1 like
Reply

Hi @tanya1981

That is another option for me, and not something I have taken into consideration yet. It may be an option but this whole process from day one has been a massive headache, it’s been really difficult. I’ve been passed from pillar to post, they’ve had me in for suspected cancer, a life-threatening infection on the heart called endocarditis, they’ve medicated me for an illness that I didn’t even have, they drew blood to send to Bath laboratory to test for systemic sclerosis, it was only 3 months later that I found out those bloods were sent to the wrong lab, they done bloods to diagnosis Raynauds but done them wrong on two occasions, they threw me out of A&E at 3am with no phone, no money, no transport and an hour and 15mins away from home, it was -6 degrees, I had a massive Raynauds attack and sat in a bus stop until 4am crying my eyes out... so much has gone on and during this time my symptoms have worsened, and noted in every letter sent from my rheumy to my GP .... they have delayed my diagnosis and treatment for months due to a complete lack of competence on their behalf ! I’ve finally got my referral to Dr Pauling, I’ve come so far in all of this. Now I have this “funding” issue thrown in my face, just when I start feeling hopeful again! I can not possibly face going private and going through the whole process again. I have asked if I can pay to go private in Bath with Dr Pauling instead of fighting for funding, but I’m even denied this because he is NHS ...! For two months I’ve been sat at my front door like a dog waiting for the post man! Waiting for my appointment letter with Dr Pauling. I’m fed up of disappointment now and I try not to get my hopes up anymore - what will be will be I guess 😒xx

Reply

Jazz keep fighting - you need to see a specialist for the best help and treatment (not just any rheumy) . Have you spoke to the Royal Free about Prof Denton - his outreach clinic at the Royal Glamorgan? You could see him privately for your first appt as I know he is both NHS and private - I was going to go down that route in Jan.

Also the lady on the Sceroderma Facebook group who suggested Prof Denton - maybe you could speak to her about how she went about getting that referral - always here for you xx

Reply

Hi Jazz, this is absolutely awful! I am so very sorry (and apologies for the late reply- I tend to go through healthunlocked only once a week as still working and looking after a 3yo and a 6yo...)

You are such a fighter to have gone through all of this so far - must be very proud of you resilience - so many people would have given up!!!

I think you’re right to take your health within your own hands, especially given the disperate answers you’ve been getting so far... educate yourself as much as you can, stay close to the best doctors, go to the SRUK annual conferences to meet some of these best doctors (I did go to one of these conferences with a lot of fear in my heart as it happened only 2 weeks after a rheumatologist diagnosed me . Both Dr Denton and dr Pauling were there and I had personal conversations with both)

If you decide to follow the private route and you need funding, I will be happy to contribute to a campaign for raising that

Keep us posted and don’t give up,

Tanya xxx

Reply

You may also like...