Newly diagnosed

[Meg52]

I want to apologise before I start in case there are two posts as I have just lost my first one and need to start again.

I was diagnosed with SLE three weeks ago but I have been poorly for many years without being able to get any proper help.

Alongside the lupus symptoms I developed a cough and breathing problems, after a few years of coughing I was eventually referred to a chest consultant. After tests and scans etc I was diagnosed with Interstitial Lung disease with fibrosis in both lungs. The chest consultant was concerned and referred me to a multi discipline team, after seeing various consultants within the team I was referred to Chapel Allerton and diagnosed with lupus. The Lung disease is secondary to lupus.

They gave me a steroid injection and prescribed mycophenolate which I have been taking for three weeks. I wondered how others who have been prescribed this drug are progressing and how long before the benefits are felt.

When diagnosed I initially felt relief that I was finally getting some help. The rheumatology consultants at Chapel Allerton were so caring,

Since then I have veered between relief and also bitterness at the dreadful ‘care’ I have received over the years which has allowed this disease to progress so much.

The last week I have had a bad flare up which I know will probably be down to the emotional state I’ve been in.

I must add that I am very fortunate to have such a caring husband and daughters. Also the support of the wonderful people on the British Lung Foundation Forum.

[eekt]

You've come to a good place for support and understanding Meg, many here have walked traumatic paths to reach a diagnosis, some, like you, left with terrible results from the delay...its shows has much dismissed symptoms over years scar when the diagnosis for such a nasty disease comes as a relief, and you are not at all alone in that, sadly

I think our wise whisperit tried myco for ILD but I'm sure other folks will be along soon with their experience

Thank you for sharing and joining us, and welcome aboard! Feel free to vent and let all the bitterness go - better out than in! Wishing you all the best with your treatment plan! xxx

[Meg52 in reply to eekt]

Thank you for your kind words, it only seems to take that to get me blubbering. After struggling all these years to get some help, I found out from the hospital last Tuesday that my GP practice will not monitor me or issue my prescription until I'm on a steady dose, which could take quite a while as I have to be on the steady dose of myco for three months. I asked what happens if I am poorly and don't know whether it's the myco effects or not, I was told to ring the hospital helpline. I will have to travel twenty miles every time instead of a five minute drive to my GP practice. I was told that my GP practice are quite within their rights but are being unhelpful. I just feel that at a time I need support from my doctor I am not going to get it.

My sister has Lupus and as a result years ago my family were asked to take part in research to find the genes for Lupus, after a few years they rang me asking for more blood for the next part of their research, when I told them how poorly I felt they said I should get blood tests as I was overproducing auto antibodies for something called OX40 Ligand, the phone call was followed up by a short letter to show to my GP. He did a blood test, but said he didn't see what they had seen. I didn't manage to get any help, so to say I feel bitter about it is an understatement. I know I will get past my present emotional state because I haven't got the energy to waste and I think I'm a fairly strong person, but right now I needed to talk to people who would understand.

So thank you. xx

[eekt in reply to Meg52]

So sorry you've been left in the lurch...there should be a shared care agreement* in place for myco, setting out the GPs' responsibilities, including monitoring overall health and well being, watching for side effects and doing some bloods

I'm in exactly the same situation with my GPs (though currently med-free), and I have/had dsDNA my GP didn't 'see'!

Bitterness is an understatement in my case, due to ongoing repercussions (eg factually incorrect pre-employment medical reports) but I do my best to convert it into fighting strength...that doesn't always work, but I keep on trying

It's unimaginable that as a participant in lupus gene research, and with a sister diagnosed, that GPs would shrug their shoulders and not look into for you...if can, change practice (I'm stuck with a choice of one)

Stay strong, be well and keep posting! The forum is a good place to be xxx

*here's a typical one: surreyandsussex.nhs.uk/wp-c...

[Meg52 in reply to eekt]

Thank you for the link, I’ve just had a look at it and rung my GP practice to discuss what’s happening. The doctor is going to ring me after morning surgery.

No-one from the GP practice has actually spoken to me about it. The practice manager and a secretary from the hospital had what sounds like heated telephone exchanges and this was the result. I don’t know whether the practice manager or the doctor made the decision to not monitor me. I had to tell the receptionist what I was ringing about which I would have preferred not to do as the receptionists and practice manager all work in a very small office together.

Depending on the outcome of my conversation with the doctor I am going to look into changing GP practice. There have been a couple of things in recent months that indicate he is not reading reports from the hospital fully. Ie. He didn’t know I had Lung disease and fibrosis until About 6 months ago until, after telling me there wasn’t anything on my lungs I asked him if he hadn’t received a report from the hospital which I had received over a year earlier. So I’m not entirely happy with him.

It looks as if we are in a similar position, but how do we know if a new GP would have an interest in lupus.

I’m so sorry i’v Loaded all this onto you, but thank you, I do appreciate your support.

[eekt in reply to Meg52]

It's just great to share experiences Meg, very many folks have trouble getting a diagnosis, but for GPs to dismiss consultants letters with VERY serious diagnoses is unusual and beyond the pale...I'm very fortunate not to have had organ involvement in my eight years pre-diagnosis, but I'm sharing your bitterness about your GP not bothering to grasp hospital reports...WITH ILD! I'm raging!

If you are able to shop around for GPs (I'm rural, and stuck with what I have)....maybe a shout-out with a location to see if other members can make recommendation?

...I'm treated with contempt by receptionists and the practice manger now, after my complaints were turned to 'allegations', but I have to keep going to save my mortgage

Fingers crossed there's a good outcome from you discussion with the GP...let us know how you go and keep posting! xxx

[Meg52 in reply to eekt]

I looked at the link you gave me and made a list of questions I wanted to ask the doctor about my care and prescription. I told him what had been said to me and that I was worried I wouldn't get support, he said there had been a mixup over reports and he would prescribe mycophenolate for me and monitor my care, he said I know you need this medication, that I had to go to him if I thought there were any side effects or infections, if necessary he might have to refer back to the hospital but go to him for anything. Which I am happy about. He said I hope this reassures you.

He was very nice about it and I got the impression that although there had been a mixup with reports and he wanted to read the report before prescribing he didn't know what had actually been said. I think the hospital secretary and the practice manager clashed and I happened to be in the middle. Hopefully it will settle down and not cause any bother with the practice manager.

I'm sorry to hear about your bother with the practice manager and receptionists, it makes going to the doctor very uncomfortable. Thank you so much for listening and your help.

[eekt in reply to Meg52]

Best outcome for the myco trial! Well done for being bold! I do hope it is reassuring, because having faith in your first point of contact if you feel something's up is so very important with these meds...here's to every success with your new treatment plan!

Let us know how it goes! xxx

PS I've a meeting with the 'managing partner' pending and hopefully that will straighten things out at the surgery

[Meg52 in reply to eekt]

Thank you I will, hope the meeting goes well for you. xx

[eekt in reply to Meg52]

Thank you! xxx

[Hidden]

Hi Meg my goodness reading your post is like reading my situation at the moment. I am sorry that you are going through the same thing as me. After 14 years of being told I had ME/CFS, in June I too was diagnosed with SLE and after two x-rays and a CT scan was found to have interstitial lung fibrosis in my left lung too. I am currently on mycophenolate, naproxen, lansoprazole, thyroxine. Blood tests every two weeks. I don't know what to expect from the effects of this medication either. I was told it may take 3 months to get into your system. Then I was told if you get a sore throat to seek medical advice. My GP doesn't want to know because "I am under the hospital" the hospital tell me to see the GP. To be honest after being misdiagnosed and treated like a hypochondriac for years by the GP surgery I don't like them very much either! At the moment I have an awful cough at night and bring up lots of mucus. I phoned the hospital who said if its green etc to seek medical help or see your GP. I am not due to see my Specialist Nurse until 11th September. So I will see how I go over the next couple of days if not I will phone the hospital again and see what they advise. Here if you ever want to chat etc. Take care Valerie xx

[Meg52 in reply to Hidden]

Hi Valerie, thanks for your reply, I’m sorry to hear the same thing is happening to you. Some of these doctors have a lot to answer for😡

I’ve been taking mycophenolate since April 16, I am now on 1 gram twice a day, they have said existing damage can’t be repaired but hopefully it will reduce or stop any further damage. After initially feeling a bit sick and headache I don’t seem to be having too many side effects from the mycophenolate, my reflux is slightly worse but other than that nothing else.

On Thursday I have an appointment with the lupus nurse who I have been having six weekly appointments with so anything that’s worrying me can be discussed then.

I see you are also on medication for other conditions, how are you feeling on the mycophenolate and are you having regular checkup appointments besides blood tests?Don’t delay going to your GP if you have green phlegm, the mycophenolate lowers your immune system and it’s easier to pick infections up and more difficult to get rid of them.

I thought I was starting to pick myself up emotionally but after my recent lung function test the consultant rang me last week and said they think I have leaking heart valves and we need to eliminate Pulmonary Hypertension, which going by my other scans etc I’ve realised is a kind way of telling you. My dlco is 36 and he said the low gas transfer is the cause of exertional dyspnea.

Good bit of news, my old GP has retired and hopefully the two new younger ones will be much more on the ball. If I had the strength and energy I would report my old GP for negligence but it wouldn’t help me so I’m going forward instead.

I hope you do well on the mycophenolate, let me know and keep in touch.

Meg x

[Hidden in reply to Meg52]

Hi Meg not doing so good at the moment. Phoned rhumy nurse yesterday as have had diarrohea since Sunday she said it may be because of the tablets, cough was prob due to fibrosis. She suggested I phone respiratory people. They said I am on a long waiting list and can't be moved up the list without a GP letter? although I have already seen him beginning of June. So bit the bullet and phoned GP, no appointments, said I needed to be seen so saw a locum Practice Nurse. She said I have crackles on right side which is prob an infection and has given me some antibiotics. Told me to phone 111 if I feel worse and if no better by Thursday to go back to GP. Phoned GP today to get an appointment, none available until Friday. Just feel as though I am being sent from pillar to post. Not being seen until 11th September at rhumy which seems ages away. So hoping the antibiotics do something. Hope all goes well on Thursday. Will be thinking of you. Let me know how you get on. Valerie xx