I saw my GP yesterday to discuss my new diagnosis and treatment plan, following my appointment with Dr K at the London Bridge Lupus Centre.
She never mentioned the change in diagnosis and just said, I've been looking at your treatment plan and seeing what I can do to help.
She agreed to put the first two into action. So the mepacrine and steroids for flares. But then she couldn't find mepacrine on her system. I told her I'd heard it was difficult to get hold off and at one point had been nearly discontinued. She said, did you find that out in your online group? I was a bit defensive and said yes, but it's actually been very helpful. She quickly said oh no, I'm not criticising. Anyway, mepacrine was no where to be seen. She says she'd speak to their pharmacist and get back to me.
She did put steroids and the instructions onto my repeat. So that's really helpful.
However as far as seeing a Neurologist and getting a repeat MRI of my brain to monitor these frontal white matter is concerned and the 3 bloods including Hughes - she said it's not primary care's responsibility.
So I basically said so I need a Rheumatologist to take control of my case? But that's been my problem all along.
And despite proving my second opinion from Dr K to my health board on 3rd May - three weeks ago - I have not heard from them further. I've no idea when I am seeing the Rheumy Dr C locally.
I chased the health board by email yesterday.
So here I am, new diagnosis and treatment plan from 21st April and I haven't moved far forward. No mepacrine and no local Rheumy to take charge.
😬😬
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Wendy39
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I am OK at the moment, thank you. I am definitely out of that flare up, headaches still threaten most days, but that big one has gone and I have ear ache every day, but energy levels are up. So about as good as it gets, without steroids really. How about you?
Now just trying to cope with this hot weather! It's draining, isn't it. Have the house windows open and the curtains closed, so that it's as cool as I can get it in here. How do you cope? It must be hotter where you are?
Yes, very pleased about the pred, that in its' self is a victory. And it does give me the peace of mind that if I feel myself slipping down hill I can self medicate, a huge step forward for me. Especially with the hotter weather now.
This morning I went to my local Boots to pick the pharmacist brain about Mepacrine and she was very helpful. It can be ordered, it's a specialist prescription but is available, takes about 2-3 weeks to order. She said if GP couldn't get it on screen, to tell her to hand write the script and they would deal with it. Apparently a pack of these is about £700. But Mepacrine is a generic and so not a branded item, so they were unsure why it wasn't coming up on the GP's computer system. So armed with that info, I drove to my doctors surgery to visit in-house pharmacy. I was on a mission to move things forward!
The pharmacist overheard me explaining to the dispenser at the counter and she came out from her hidey hole and she said, I was just dealing with this. Dr G did come and speak to me on Wednesday. I need to look at how we get it, it's unlicensed, special order only, but she would get script done and signed today and fax to Boots by the end of the day. I said thank you, I want to start this as soon as possible.
I had only been home 10 minutes when the phone rang, pharmacist at my GP's surgery and she says they can order, it will take 4-5 days, but they will order 100mg tablets and I will have to break them in half. The 50mg that I have been prescribed are capsules and they are the £700 a pack ones. 100mg tablets are much cheaper. I explained that I get diarrhoea/IBS symptoms with my lupus and the MMF doesn't help, I struggle sometimes to control it and would snapping the 100mg tablet in half cause me any such issues, she said she didn't think so. But will order today and phone me next week when it is ready to collect. So that is hopefully ticked off the list!!!!!! Their pharmacy have been helpful recently and I make a real effort to thank you at times like that. They probadly think I am a pain in the derriere with all the fuss I have made, but I want them to see I am a nice person, I just a little help from them all.
Onto the next item.
I think, as I chased the Health Board by email on Wednesday and still have had no reply to my second opinion sent by email on 3rd May, I might email MP and AM today together. I need to know what the waiting list for Dr C the new Rheumy is and who will organise the other matters on my new treatment plan.
Dr C is the other rheumy at my local hospital. There are two of them Dr B, (AKA my Reluctant Rheumy) and Dr C both part-time - and just the two of them for the whole of Pembs. When I complained to the Health Board about Dr B, I was told my expert second opinion would be provided by Dr C and I would go onto her list. Dr C is not a lupus expert. I haven't meet her yet. But now with Dr Kaul at London Bridge Lupus Centre on board, at least I know she should just follow his treatment plan for me. Shouldn't be too difficult should it??? ha ha.
Hello M. How are you? Still battling with the steroid reduction?
I was thinking more Eastenders? I like the every day grittiness of it! You have to laugh don't you. But who would play me? Ha ha.
I think people of the general public wouldn't believe me if I told them!
I did think that once I got that 2nd opinion in my hand that it would all fall into place and they would, well not apologise, because I don't think their legal departments will let them do that these days, but accept that they need to help more. But I should have known better.
But like you said, I've come this far, I'm not giving up now!
I agree with coco, your GP must be able to get hold of mepacrine or give you a script. At least she's going to speak to the pharmacy so that's something I suppose. As for hughes bloods, it should be her responsibility. GP's are able to order these so why is she being awkward?
Keep emailing or faxing the health board who are probably hiding with their tails between their legs wondering how to avoid this one and push for a neurology appt too.
It's such a shame you have to go through all this when you've been through so much already.
It's a bit of an ongoing nightmare for you really isn't it?
I agree with the others of course - well I would wouldn't I?!! I'm never really sure whosejob it is to refer us on for things? I was referred to different specialists in the same hospital by different GPs in different practices as I've moved around so much. Now I really would like to see an immunologist or allergist but I suspect I'll be told similar i.e it's for my new rheum to decide.
My rheum asked me to try Pilocarpine but I said no as had already agreed to try Sildenafil. When I told the BSSA helpline woman this she said this was just as well as Pilocarpine suppliers have stopped making it abd new suppliers aren't yet distributing it. Maybe something similar had occurred with Mepacrine?
Awful having to keep chasing up continually. This happened to me when I was up in Orkney and it felt never ending. I hope you get a proper break very soon. X
Yes, I will keep pushing. I don't have many options open to me now, do I?
See my reply to Barnclown above, I think I have the Mepacrine sorted now, thank goodness!
Like my husband said, we've paid for a second opinion and we'll consider paying for the bloods, (which apparently the GP can order via the private local hospital, at a reduced rate to the private prices? Who knew that?) but we shouldn't have to pay for a private MRI.
It's very frustrating, as he feels like we've both worked hard, paid tax and NI etc, we pay for private health care which is arranged and subsidised by his company and now we are paying privately too. So paying 3 ways. It's madness. Anyway, that's another issue and would take it weeks to sort out, ha ha.
I am going to email my MP and AM now to try to get them involved.
Sometimes it's worth going through the practice manager as they can chase up the finer administrative details. I sent a letter outlining what I needed to the PM and they've delivered most of it and developed a more helpful attitude in the process.
I think Dr K will write a prescription for things that GPs are reluctant to prescribe, but it doesn't sound like you are there yet.
It is your right to be referred where you want. Guy's (Louise Coote) is right next to London Bridge station (I've been referred there after a bit of a fight, and got an appointment very quickly comparatively).
The letter I wrote to my GPs was polite but firm, something below a complaint but made it clear I would escalate it if necessary (it gives them the room to fall back without losing anything). Practice Managers are the best people to go to.
I hope you feel you can try - it's important to get the right care.
I don't mean to sound rude, but that is not the case in Wales. My story is a long one and I've posted many times. Wales NHS is a completely separate entity to the English NHS. I don't have the right to be referred wherever I want. If you read some of my posts you will see how hard I have tried and the battle has effected my health without a doubt. I haven't got time to reply in full right now, but I will do later. I appreciate the time you have taken to reply to my post but it's not that straight forward for us here in Wales. I am now thinking I need my AM to take action on my part. More bureaucracy for me to deal with. I hope you have a good day today. Best wishes, Wendy
Very sorry Wendy39. I am new to this forum and to the awful Lupus and who knows what else diagnosis, so hadn't heard about your struggles before. Terrible that you are subject to a regional lottery on healthcare. I hope your GP steps up and/or that LBLC can help. All the best.
No problem at all! I didn't want you to think I was being rude. It's only recently that I have begun to realise the huge differences with patients in England and Wales. There is no NHS for Britain any more with the same rights for all. It's been separated and this has has led to huge differences in care. Such a shame. But I'm not going to be bale to change that on my own. It is a total postcode healthcare lottery. x
Apologies for this, but to recap, you had a 'private appointment' @ the London lupus clinic?
I've tried to back read your thread and see alot of different things over a period of time. Why has your GP not referred you to rhumetology all this time? Oh silly me,for the same reasons it's taken me a decade. Um....Or why have you not simply 'walked' into another practice and signed up?
Sorry for this, prehaps you have got no choice given your location? Could not another GP at the practice been more helpful? Prehaps you tried that and prehaps not helpful.
27 hour round trip is a marathon for anyone who is sick. I'm speechless has it come down this low to this? We don't have as a normal-(despite the industries best efforts) top-up medical insurance to cover the costs that the NHS should cover, so that was expensive!
Prehaps you should send the NHS the bill or at least a copy with a letter of complaint and tell them 'you want your money back' for the GP who has a contract with them, that has systematically blocked you!
It's crazy. And still she seems in denial? Has her brain left the building along
with Elvis!?
This medication I read on the helpful links posted,is made in small batches on a request basis with BOOTS pharmacy? Which is why when they have the licence,she couldn't see it on her NHS system that likes to share cheep genetic brands not a specific? You may need to get the Clinic to write to her and request this especially for your treatment plan. One size dose not fit all. And it might also be helpful at that same time that she is reminded that every lupus case is individual.
Oh Wendy, what a let down after all your struggles. I agree with what others have said about getting hold of the med Dr K advised. I know you won't give up, but wish so much you don't have to fight so hard. Sending a hug x
I feel ur frustrations it to almost a year for them to diagnose hughs and now after another painfull 6 months to even get to see a specialist for now what they think is lupus as well x keep pushing some say he who shouts loudest wins 😊 x
You are so right! You do have to shout! My story is a long one, starting with being misdiagnosed with SCLE in November 2013 and then not being taken seriously by my local Reluctant Rheumy. The hydroxy wasn't enough to keep the symptoms under control and even after starting MMF last summer, it hasn't been enough, after a battle to get referred involving 4 requests from me to various doctors to be referred out of my area to lupus experts and consultant dermies, I involved my MP but didn't get anywhere with that. I went to a private appt with a lupus expert in London on 21st April and was told I have SLE and not SCLE, and I've had it all along. Now I have a new diagnosis and treatment plan, I need my Health Board to realise that I need to be taken seriously and I need help putting my new treatment plan into action. So my battle has been 3.5 years now and I think I've had from 2008, but undiagnosed for 5 years. It's a nightmare. There needs to be more awareness of lupus with doctors and the general public. I wish you well on your own lupus journey. Wendy
So sorry Wendy that your fight continues, grrr makes me mad 😡, I feel your frustration and anguish I really do.
Your strength gives us courage too👌🏼
I had a little encounter with a GP yesterday that wasn't my usual, he's very young and only been there a short while with not a great bedside manner, I asked him for another prescription of steroids and he said I had to make another appointment because I'd already had my ten miniutes....seriously....So I explained a few things to him and insisted...he gave in so I told him if I ever have to see him again I'll book a double appointment, he said if I have a list I need to prioritise what's on it, my list was in my hand the whole time so I showed him, head symptoms/sinusitis, canestan, prednisolone ...all the things my gp had instructed him to do, not too difficult! He's the only dr that's ever made me feel I need to hurry up and get out, he did this the first time I saw him too!
Gosh it's appalling!!!!! Makes me so angry. Compassion? Empathy? Bedside manner? There is a total lack of understanding of lupus and its effects on us, with GP, Rheumies and the general public. I don't think we'll win this awareness battle in our life time though, sadly. I try to console myself with the thought that the next generation, if my children are ever unlucky enough to develop this disease, that they will be better treated and understood. Have a good day. Wendy x
Oh I hope so Wendy, I think we're further on from 20 years ago when my dad was diagnosed with full blown SLE even though he was lucky enough to have an amazing rheumatologist but it's nowhere near good enough for so many of us, attitudes are shocking, it just seems a shame that we have the stressful battle of having to teach them about it and what we need to function on some level.
I have now emailed my MP & AM and told them I don't know what to do next. I am hoping that they will chase Health Board on my behalf and get things moving! Fingers crossed. Thank you all. x
I spoke to his secretary last week and as parliament is dissolved until after the general election he can't take on any new matters but he can continue with ongoing issues. She did want to be kept informed. So we will see. I have everything crossed. How are you? X
Toasting - 26C today. To get hotter later in the week - 29C on Monday. Unless the forecast thunder arrives at the wrong time. You have nice weather today don't you? Though there was a splodge of blue heading for the west coast to spoil it - enjoy it while you can!
That's good - do you want him back next time round? I assume you do - saves training another...
So sorry Wendy you are having to still battle to get the care you need!. It's an interesting insight that doctors don't like us patients to be too well informed, they feel threatened!. I often wonder what mine would think if I told them I was on this forum!. I've kept quiet because I'm not sure they'd like it!. I just hope your MP can get some sense out of the Health Board for you and you get to see your Rheumy and Neurologist!. So important!. As to Hughes bloods I would have thought your GP could do them but maybe a Rheumy is needed I'm not sure!. I think what your also sadly seeing is how doctors stick together and make it so difficult for the patient who stands up for themselves!. Not right but it happens!. Hope this isn't the case for you. Keep us posted how you get on and good luck. X
When I saw the Rheumy Nurse at my first (and possibly last) appointment last November, she told me that pro-active patients have the best long term outcome with their health and she actively encouraged me to approach my MP as my 4 requests for referrals out of the area had been rejected before even trying. She even said she'd draft an application on my behalf and get Dr B to just sign it - but Dr B even refused to do that.
But then when I did go to my MP - like she encouraged me to do, they all closed ranks and have now still not replied to my second opinion sent to them on 4th May.
They want you to be pro-active and well-informed but not too much! I am sure they are all talking about me in very negative terms and I don't know how the new Rheumy Dr C will treat me when I eventually see her. However, I don't really care to be honest.
I know that I can see Dr K in London, as and when necessary now. I have 3 drugs on prescription - hydroxy, MMF and mepacrine and steroids at home ready for any flare. It was nothing personal to Dr C, but was definitely personal for my Reluctant Rheumy, Dr B. Even so, I have never been rude to their faces. I've been strong and determined in my appointments (well, most of them - as opposed to being upset) but nothing else.
And if I have got them all thinking about how they treat, deal with and speak to all the lupies on their books then great.
Yes, now just the Neurologist and MRI and bloods to sort. If I don't get a response from the Health Board, I am thinking that an appointment with my GP Surgery Practice Manager might be in order?
But seeing as I now have my MP and AM both trying to get a reply out of the Health Board, surely they can't drag their feet much longer???????
I so agree with you about only being able to be proactive patients so far!. It's a tightrope to walk to get the best results!. I really hope you get your healthcare sorted. I admire the way you won't give up, very inspiring. Keep us posted. X
Its so disappointing when an individuals health becomes so political. Its not good enough for us to know what our diagnosis is if we cant get the care. I wish I had an answer for you. It would seem that those in parliament have completely lost touch with what is required when they feel that putting in a target or that enforcing NICE guidelines is enough. The human element disappears.
Hello. Sorry for delay, had a mad week with the children off school. I know you've worked in the system and we all know and understand the difficulties facing the NHS and funding etc. But I can see a very different picture here in Wales. Our NHS Wales is devolved and the Welsh Assembly is run by Labour. They don't seem to be making a great job of things here, but that is in my very limited personal experience. I don't want to get drawn into a political discussion, that's really not my style, it's just my own personal observation from this side of the border. The trouble is having lupus brings us into contact with the departments that are under the most strain I think - rheumy and dermy. Dermy are facing huge increases in skin cancer referrals and they must take priority, obviously, but it means that our skin issues and other less urgent cases get shifted back in the queue etc etc. I am sure that we all want to find a pot of gold at the end of the rainbow and fix the NHS, otherwise I don't know what the answer is. But you are right, finances along with the increasing pressure of targets, is a terrible combination. It does make you wonder where it will all end? Wendy x
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Stage 3 CKD for 2 years and my Rheumatologist did not tell me!
Neuro, GP visits and so the saga continues...SLE/MS/EBV?!$
Methotrexate for the summer
Nothing gained by rheumy appointment 
Will steroids affect my blood readings
