Long awaited First rheumatology Appointment 9.30am Elaine Smith- Cheltenham General Hospital

[LauraMk30]

Hi everyone, can't believe it's been 4months to see this lady consultant. I'm not nervous as I've been made aware she's ever so compassionate Im not sure what to expect, but I hope I can come out of that room with a little more knowledge and understanding of what's wrong with me! fingers crossedX I've researched & seem a little bit more equipped with right questions to ask, my doctor didn't release my medical records which is... annoying but I have some back up thankfully my dads booked the day off to come in with me. Ahh wish me luck x

[Suzym2u Moderator Vasculitis UK]

How did you appointment go? Elaine

[LauraMk30 in reply to Suzym2u]

Hi Suzy, very sorry for the late reply.. my mother has been sick & due to my brothers laziness I had to care for her. I'm now feeling absolutely dreadful, but my mum is on the mend. Right my appointment was ok.. Elaine wasn't there.. which was a shock as I didn't want to have that thrown from pillar to post feeling.. but he was quite thorough, my appointment lasted 1hour 10mins. He started by asking questions of my symptoms, & how long this has been going on. He already had my recent records from some admissions at the hospital. & the letter from other doctors apart from my own. I had to undress & let him look At my swollen joints & lesions. He was quite surprised at how long I've been suffering with no referrals or help from Anyone. The dialogue was great, we did have a giggle here and there which broke the ice. Bloods were taken ANCA- a repeat. FBC, Thyroid. Spoke of my blood clot & suspected TIA + Diagnostic tests for APS ( Antiphospholipid syndrome)

& after explaining all of my symptoms sinus, vision issues, kidney, Lung nodules, skin lesions, tiredness, loss of appetite and aching muscles and joints. he spoke of GPA & wants to do a whole range of tests & referred me to a Combined Dermatology/ rheumatology clinic for Skin biopsy & lung. He also mentioned starting treatment in 6 weeks Which scared me a little.. an intravenous drug called Azathioprine & Prednisolone. I'm awaiting for the appointment for the biopsies to come through the post, hopefully not too long xx

[LauraMk30 in reply to LauraMk30]

Forgot to mention Suzy, I was diagnosed on the day with a multiple connective tissue disease. No labels just yet but hopefully all the tests he has planned Will be able to put a name to it.

[Honey46311 in reply to LauraMk30]

Hi Laura.

Are they going to complete a wedge biopsy or punch biopsy? I would recommend a wedge biopsy because it gives them more tissue (deeper) to diagnose with. It is considered a surgery and will leave a scar but it's worth it. I think I mentioned it before in my post. Hope things get better for you !

[Katie18]

I hope your appointment goes well laura - you are doing the best thing by asking lots of questions.

[LauraMk30 in reply to Katie18]

Thank you Katie18 it went well, & as I wrote back to Suzy ^ you can see I have found a light at the end of the tunnel still not out of the woods but I feel a little relieved now I have found a good consultant who is willing & wants to help x

[Suzym2u Moderator Vasculitis UK in reply to LauraMk30]

Please keep us updated how things go and it is reassuring you are seeing someone who us listening to you.

[LauraMk30 in reply to Suzym2u]

Hi Suzy, I most definitely will, very reassuring I couldn't believe my luck ive got some new symptoms and I spoke to my doctor last week and as I'm not on any medication apart from blood thinners and lanzaprazol he came down hard on me over solphodol painkillers, ordered me to wean off them which I found insulting as by no shape or form am I addicted.. there's many tablets I cannot take with my blood thinners so one doctor prescribed them to me. Other than that I'm not taking anything and the pain in my legs is deliberating. I'm not sure why he felt the need to mock me. I don't see this male doctor much and he was the reason why my illness wasn't taken seriously. But anyway I am really nervous about the treatment but all I want is to have a some kind of even ground ya know 7 years and counting and I've finally been heard Xx

[Katie18 in reply to LauraMk30]

Hi laura I'm pleased for you. It makes all the difference when you have a thorough consultant who listens and that you have a rapport with. It looks like they are really looking into things properly for you so good luck x

[LauraMk30 in reply to Katie18]

Hi Katie, thanks for replying & thank you yes i feel at ease now, there's one thing in this world that some people lack is the Ability to listen but to find someone who wants to know and help is a miracle in itself. Have you had an biopsies? Or any tests? Just to give me a heads up on the process! Xx

[Katie18]

Hi laura I had a biopsy of the nerves in my lower leg but it went wrong & the surgeon didn't get what they needed. My consultant was convinced I'd got churg Strauss without me going through it again. I had lung tests & heart tests too - lots of MRIs. I think they MRI'd virtually the whole of my body when I was in hospital. I had nerve conduction studies too.

[LauraMk30 in reply to Katie18]

Thanks Katie, jeez you have had the works. So what is your is diagnosis of late ? Churg Strauss is rare? Sorry to hear your biopsy went wrong :/. Was it painful ? How are you coping with treatment x sorry for all the questions x

[Katie18 in reply to LauraMk30]

Hi laura I had my biopsy done in the v early days 4 years ago when I was in hospital anyway. It was just a minor opp they froze my leg & took out a bit which they thought had a nerve - but it didn't! I didn't need to be put to sleep, it was just a bit sore after & hasvleft a little scar with stitches. It would have been more major if they'd taken a lung biopsy which they sometimes do with churg Strauss patients. I have peripheral nerve damage in my lower leg which is why they opted for that one. My diagnosis is definitely churg Strauss the clinicians were pretty confident without biopsy. I was on cyclophosphamide for six doses which I didn't tolerate v well but it seemed to work. I was then on prednisolone - high doses first then gradually tapered & aziathiiprine which I tolerate ok. I've been off steroids for six months now but they have affected my body's ability to produce natural steroids so have v recently been put on hydrocortisone- a small dose - which is supposed to mimic body's steroid. It doesn't have the moonface & drastic side effects but I can feel it altering my sleep patterns, causing mild stomach problems & making me more emotional. The long term plan is to wean me off it too & gradually reducing the high steroid inhaler I have. I am still on aziathiiprine & expect to be for at least another 3,years. I had a relapse after 2 years when I managed to get off steroids initially which is why they have kept me on high dose of aziathiiprine this time round. Still take amitryptiline at night to help with nerve pain & sleep - only a low dose. My aim is to be tablet free one day -- I think they all have side effects some greater than others! Hope that helps cath

[LauraMk30 in reply to Katie18]

Wow sounds like you've had some good treatment along the way. I'm a little scared of the treatment but I don't want to feel this way anymore. My consultant said Wegener’s Granulomatosis straight away. But hopefully these biopsies appointments will come through quite quickly. Feel as if I'm going downhill quite fast.. I have little knowledge of Churg Strauss but I will do some research. The drug you mentioned.. aziathiprine that what the rheumatologist wants to start me on in 6 weeks time. For some reason I thought that was for remission treatment as vasculitis has 2 stages of treatment?

I'm having trouble swallowing so he mentioned having it intravenously.. I have a manic phobia of being sick.. so scared... but I guess I just have to stop whinging like a big baby & just go with the flow.. anything to help me get better. I would like to get to a place where you are, which I mean you know what you have, your taking the right meds & your 4 years down the line.. & still here to tell the tale. Your really brave x

[Hidden in reply to LauraMk30]

Hi Laura,

You are right, Azathioprine isn't enough to induce remission and is a maintenance treatment. Also Azathioprine is a daily drug and as such isn't given IV. Sometimes steroids are given IV for 3 days to start off treatment. If you are having Kidney issues then the best thing to biopsy is the kidneys as it has the highest chance of success, lung biopsies have a significant rate of false negative results.

If they think you have GPA then you shouldn't be waiting for biopsies etc, they should be doing them as a matter of urgency.

I hate to repeat myself but the most important thing treatment wise is seeing an experienced Consultant as Vasculitis is very rare, the fact that you had to wait weeks for this appt suggests to me that they don't have much Vasculitis experience. I would ask them how many patients they have.

[LauraMk30 in reply to Hidden]

Hey Keyes, Thank you so much for replying. I don't think I can stand this waiting game much longer. The rheumatologist was a nice enough man, & examined me throughly, but when he said I had to wait 6 weeks my heart jumped out my mouth.. I can't wait any longer. Knowing the way I was feeling on the day was bad enough but now I'm feeling worse, ive lost more weight over the last week, I'm beyond tired, I look & feel like death but to be told I have to wait for a combined dermatology & rheumatology clinic appointment that could take 4 weeks for just biopsies made me bow my head. It's ok to talk about future treatment but I think by making me wait between each appointment my body is just getting weaker by the day. He said he was concerned but if that was the case as you said with GPA you need to be seen immediately. I asked how many patients he's seen with vasculitis, & he said 1 many moons ago. But he has done his research prior to seeing me, He mentioned my diagnostic tests are gunna be like an experiment. I Didn't feel very good about that. I understand that it's gunna be complex for him & others but I honestly & genuinely can't wait. I had a fall today as my legs went numb, pins & needles. Heavy feeling, I'm wheezing a lot & breathlessness comes and goes. I've asked to see my doctor who are the culprits in this & I have to wait for the 26th April for a general appointment. I just need some help Keyes, I'm like a candle in the wind.. x

[Hidden in reply to LauraMk30]

If you had a complex surgical problem would you let someone operate on you that had only done the operation once years ago?

Vasculitis is the same, it doesn't sound like the Rheumatologist you saw has the appropriate experience. I would push for a referral to the Vasculitis clinic at the QEH in Birmingham run by Prof Lorraine Harper. You can't wait another six to eight weeks.

[LauraMk30 in reply to Hidden]

My point Exactly ! Great example. How do I go about getting a referral? Is that from GP.. ? No I can't, I'm glad you can empathise with me x thank you Keyes

[Hidden in reply to LauraMk30]

It will need to be your GP. As you have had diagnostic delay because of them I would explainthat the Rehumatologist is inexperienced and that you need a specialist referral.

I will post the link to the BSR guidelines for treating ANCA associated Vasculitis, you need to stress to your GP that you are only lookingfor evidence based treatment.

[Hidden in reply to Hidden]

The guidelines talk about timely, evidence based treatment from specialist centreswho have Vasculitis experience.

rheumatology.org.uk/include...

Get them o document your request in your notes and if they refuse the referralask them for the clinical reasons in writing.

[LauraMk30 in reply to Hidden]

Thanks Keyes, that's really helpful. I've not read a detailed document like that. & it was nice to read the part about how the patient SHOULD BE treated. Could I personally write to her, & I'll ask for a referral. That's the least they can do. I've just showed my dad & he's very impressed & grateful to you x

[Katie18 in reply to LauraMk30]

Hi Laura I don't feel v brave really - didn't have much of a choice. My natural instinct is to avoid medication but a consultant rather clumsily put it in black & white & said you have a choice but you may die if you don't take it. I've always tried to read as much as I can about my medication, ask for alternatives if it doesn't agree with me, experiment taking it at different times, usually taking it with food & talking to helpful chemists both at the hospital & where I live about any side effects & my GPs. Also you can ask people on this forum - great font of experience & knowledge who don't get fed up of hearing from you. We are all so different so you have to work with what's best for you & that you can tolerate. But do keep questioning and talking to as many clinicians as you can - it's a healthy thing to do! I think patience, giving things a chance to work and learning to listen to your body & go with it have been the biggest lessons for me. It's really tough at the beginning so be kind to yourself & rest a lot x

[Tillyray]

Dear Laura. I am so very happy to hear that you have finally been acknowledged and that treatment can begin..The idea of any treatment is daunting but this will be a new beginning to a better quality of life. I really wish you all the very best. Keep InTouch.💟 xx

Thank you for your kind message🙂x

[LauraMk30 in reply to Tillyray]

Hey TillyRay, I had tears of joy reading your post. I've been praying for you yes it's a little daunting but I really just wanna get better now a new beginning sounds bloody perfect ! I wish you all the best to Hun, your most welcome xx

[klc48a]

Good luck