Update. Appointment with GP With Specialist Interest in lieu of Consultant Dermatologist

It’s late and I’m tired but I need to do this before I forget it all and maybe it will help clarify things in my head.

It went OK. He was pleasant enough. He listened. He didn’t treat me like I was stupid. He didn’t patronise me. He seemed OK. Just not a Consultant. But that’s not his fault and I guess as the Health Board have no Consultant Dermy right now, he is doing them a favour. You see I’m trying to give him the benefit of the doubt. My husband said, give him a fair start, judge him when you’ve seen him and stay calm.

GP wsi asked how I was. I gave him a brief run down on how my year had been, then finding My Knight and the 2 x steroid courses and the MMF. Now on 3g a day MMF and no steroids. However, run down with headaches, bladder infection, cough/cold and infected nose Sep-Oct time, still got itchy rash at nape of neck that had nearly gone when on steroids, diarrhoea real issue recently and headaches of different types. We discussed quality of life with 3 children to take care of and me napping again most days.

He said “Do Rheumatology stir the pot, just not so frequently?” I said They don’t stir the pot at all. I said my diagnosis was SCLE With Systemic Features. I told him that I had tried to go with my Knight to Cardiff but he couldn’t transfer me himself. So I had tried my GP and my Rheumy but it was a No. So I was going to ask him the same question. The nurse looked at me wide eyed and I said well if I have learnt one thing over the last 3 years, it’s that if you don’t ask you don’t get. Fair enough they said.

He said DLE would come under Dermatology and SLE under Rheumatology. SCLE was more difficult. I told him as far as Rheumy was concerned my needs could be met in house by Prof. He agreed that Prof wasn’t the area of expertise that would benefit me – which I thought was a very good way of phrasing it without being unprofessional. He said the ongoing symptoms I was listing were Rheumatology really. Which I know. But my Reluctant Rheumy doesn’t help.

I told him that my Knight had seen me at my lowest this year, when I had handed my notice in at work and I wasn’t coping. He said he could see I was a 2/10 but wanted to help get me back to a 7-8/10 and not to expect anymore as I had lupus and I couldn’t expect more than that. (That’s my problem though. My Dermy Knight understood that my Rheumy wasn’t helping and he told me that he was stretching the boundaries of his Dermatology role, but he did it as a doctor trying to help a patient that needed help. But not every Dermatologist is going to put themselves out like that are they?!? It’s a blinkin’ vicious circle. Dermy say my lingering symptoms aren’t Dermy but my Rheumy says I am a Dermy case. Arghhhhh!)

He asked what symptoms was I most worried about? What skin issues do I have? I explained to him, that as it is 3 years since my diagnosis, I do not really have any skin issues. I know how to protect my skin in the summer. I wear sun protective clothing, floppy hats, sun glasses, cover my feet etc. So I don’t have any rashes and haven’t for a while. The only skin issues I have are occasionally my hands and the rash at the nape of my neck. The rash that was biopsied in January and came back as lupus. That led to my diagnosis being amended from SCLE to SCLE with systemic features. I suggested he look at it at the moment as there have been sores there and it is itchy again. He didn’t ask to look at it and yet it was my first appointment with him! He said use the strongest steroid cream I have for it. Better to use a cream for that, than use high dose steroids orally for one such symptom, which I agree.

We discussed the steroids I had had and I explained that the 2 courses of 20mg for two weeks and then 3 weeks more tapering had meant that I had enjoyed the summer with my children. They had given me energy, no headaches and less diarrhoea and tummy issues, I didn’t need to nap etc. We discussed balancing steroid sparing drugs and the alternative Azathiorpine. We discussed the level at which steroids can harm you long term. Is it 7.5mg has been found to be the safest upper most level? He said I couldn’t stay on 20mg a day long term. I said I know. He said maybe you need some thrown in the mix. I asked how long I should give the MMF to work? He said he thinks 6 months. (August 16-January17). Then we’ll re-assess. He said he has a treatment plan. He can follow it.

I asked him how may other SCLE patients with systemic features were treated here. He said you’d be surprised. (I’m sure I would! I don’t think it’s that many). I said SCLE with systemic features with OA, syrinx cyst, background hypermobility etc. It’s an usual set of symptoms. He nodded but remained silent. He said he knew about the cyst and that was it.

He cannot make an application for me. He said as far as he knows it has to be a Consultant to make such an application. And he thinks it is a lot of paperwork and it would be turned down. He agreed it’s political and financial.

I asked him about diarrhoea as a side effect of MMF. He had to look it up and he said it wasn’t listed. But he offered no other advice on the matter.

In the meantime he asked me what steroids I had at home. I said none. He gave me a prescription for steroids. Pred. 5mg tablets. 20mg reducing to 10mg daily – is all the instructions given. 200 tablets in total. Considering I have only ever had 2 short courses, which the 5 weeks totalled 96 tablets, I’m not sure about 200 tablets!?

He said to use them until I see him in January/February 2017.

Now I am confused. I didn’t ask for steroids. It’s not part of the treatment plan. How will I know if the MMF is kicking in and working if I’m on steroids? What would my Knight think? I had considered long term having to have maybe a small dosage on top of the MMF. From what I had read 5-10mg at the most. But I am not an expert.

He said, if he follows the treatment plan and we’re still not sure then he’ll reconsider a referral.

So ultimately no one will make an application for me.

I have emailed My Knight to update him earlier this week. He was sorry for my “torrid time” and said that he was sure GP wsi would make the application for me. He confirmed that he doesn’t run a private clinic at the moment but is hoping to set one up very soon. I have everything crossed.

I think my only hope now is my MP and paying my Knight for maybe a yearly appointment for my sanity and peace of mind.

I see a private Neurosurgeon (via BUPA work scheme) on Wednesday re the syrinx cyst. I am hoping this guy will know what he is talking about and can advise me re the cause of the syrinx and the bilateral frontal white matter high signal could be due to migraine means. I have done a little research and some inflammation of the spinal cord can be caused by lupus and CNS involvement. My GP say I have Lupus with CNS involvement – due to migraine with myalgia. So I am wondering if this is all linked? Have you hear of Tracy Henrickson-Watson – Woman of the Year with CNS Lupus that had a lesion that led to transverse myelitis? I know it sounds far-fetched. But I need to ask. It’s only Barnclown that I know of with similar spinal issue and I don’t have the Chiari malformation.

Maybe this Neuro will shed new light on it all and get the ball rolling properly. I hope he lives up to my expectations.

Anyway, it’s late and I have waffled enough. I’m not sure I’m making sense anymore.

Thank you for listening and goodnight.

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  • Do you know - I REALLY wonder what info doctors use when they tell you that "Drug X isn't associated with..."

    drugs.com/cdi/mycophenolate...

    "Diarrhea may occur with mycophenolate mofetil. If you develop diarrhea, check with your doctor or pharmacist about ways to lessen this effect. Do not stop mycophenolate mofetil without talking with your doctor."

    newcastle-hospitals.org.uk/...

    "GI Tract - swelling of gums or mouth ulcers, loss appetite, diarrhoea can be a problem with high dose of MMF"

    Anyway - it could have been worse I suppose.

    There are many people who are on pred with doses of 10mg and above every day for years. Yes. there are potential side effects - but the judgement is "are the potential side effects going to be worse than what they are sorting out". 7,5mg is what is called a physiological dose - equivalent to the amount the body would produce naturally every day and which is essential to life. The side effects at that level aren't horrendous usually and there are a lot of people on that for life because of adrenal insufficiency or for things like myositis which don't go into remission. I've been on pred for over 7 years, most of the time at well above 7.5mg, and I have next to no side effects. But that is for later I suppose. That is a fairly meaningless instruction though: how long at 20, how to reduce, stay on 10mg until you see him? I would have thought that trying a week of 10mg pred, see if you feel better and then trying 5mg for longer along with the MMF made more sense. If it works you can then easily reduce the pred 1mg at a time and see if you can then manage on MMF only - but then I'm not an expert either.

    Good luck on Wednesday. Hope you slept well last night xxx

  • Thank you.

    From what I could see it was a Derm New Zealand website.

    Thank you for the advice. Food for thought. Going to get the prescription and keep here anyway. Still thinking if is the right thing to do. I'm very confused.

    Thanks again. X

  • Hello Wendy...my feeling is your thinking is really really good on all of this. And my understanding fits with PMRpro's reply.

    You & I do have quite a lot in common...and if I were in your shoes, I'd be looking at this vvvv much as you are. Putting everything in written words as you're doing has been key to getting the multisystem care I need....which has never been easy at any point in my 63 years of diagnostic ambiguity.

    I am sure that by posting like this you're mentoring many many sufferers who come here to read but not actually speak up. Plus, even old hands (like yours truly 😉 aka me) benefit from reading posts like yours: my struggle to get the care I need will never end...and, as you know, right now I'm feeling my way into gastroenterology lower GI investigations which I'm sure the health system will try to prevent.

    I think you & your man are courageous...am counting on you for regular updates, please 👍👍👍👍

    am right by your side

    🍀😘🍀😘

  • Thank you! That's lovely to hear. Thought by now I was boring everyone senseless! Ha ha. 😂 I'm too young to give up and I will keep going until I have unravelled as much as I can. 😘😘

  • No - never boring!

  • 😆👌👌👌👌😍🍀

  • Hi Wendy well you got more out of the doc 'with an interest in skin' then I did, I swear he just went into a trance with me. It is crazy that we are so far out on a limb in getting care that can help us be our best for family and for work and of course ourselves...

    Rested all day today, just needed it. I will have to do more research if you have any suggestions, on the differences between the differences between the skin lupus and ours SCLE and when does it has systematic features? Wishing well. ML

  • Hello ML. Will try to find some links for you. I have written to the Dermatologist I first saw, when I had my sun sensitive rash, to try to find out which type of SCLE rash I have. I'm not sure which I have but I think it makes a difference to your chances of getting SLE. Most patients with SCLE do fit at least 4 of the criteria for SLE. Very confusing. I fit more than 4 of the criteria. My diagnosis is "SCLE with Systemic Features".

    emedicine.medscape.com/arti...

    Hope this link works.

    Fingers crossed.

    X

  • Found you a few links. Hope they help. Good prep for you for you December appt. x

  • ML, this leaflet on SCLE is one of those that says you will only be effected during summer months and may be able to come off meds during winter. This definitely doesn't apply to me.

    srft.nhs.uk/EasysiteWeb/get...

  • Many thanks, first link is fine and will try the others...found this interesting in the first link 'Patients should be educated on the systemic manifestations of systemic lupus erythematosus (SLE) and be followed regularly for these.' I wonder what they should be doing then? I was going to check how often they are suppose to monitor our bloods, I am assuming as we are taking hydroxychloroquine. ML

  • Yes, very interesting. I had vitamin d levels checked by Rheumy in March 2014 but I think these levels are supposed to be checked, as we hide from the Sun and levels can go down, needing supplements. Also are we supposed to be checked more sticky blood / Hughes syndrome regularly? She doesn't tell me what she checks me for at all. I haven't had a urine test with her for over a year. Frightening really.

  • Annually in the spring (when it will be at its lowest) or autumn (when it will be at its highest) is OK for vit D. If it is low then you need a course of vit D at an appropriate level (which is NOT 800 IU/day, it needs more!) and then have it checked to make sure it is now OK.

    Most patients with a chronic disease should have a general blood test every 6 months - more often if anything shows up in one. They are to monitor for liver, kidney and other potential problems. There needs to be a driver for choosing any tests and general blood tests are the basis: urea and electrolytes (covers kidney checks), liver function, blood sugar, inflammation markers, and a full blood count (red and white blood cells, haemoglobin etc). If any of those flag up concerns - further tests of all sorts will be appropriate. There probably isn't a lot of point doing urine tests unless there are symptoms - a dip test really isn't very conclusive although checking there is no blood in urine seems sensible if you are at risk of renal damage.

    I'm sure you will have seen this: apsfa.org/aps.htm

    If you are on anticoagulation therapy for your Hughes syndrome then testing for that depends on what anticoagulant you are on. With warfarin you should be checked regularly to be sure your INR (international normalised ratio) is in the target range but with the new generation anticoagulants there is no testing. If you are just on aspirin as an antiplatelet drug there is no real testing. either. A lot depends on your symptoms and whether you actually have clots - many people don't.

  • Thanks for the tips. I don't have Hughes but thought I read somewhere the test should be repeated. I think Vit D here is only tested every 2 years on NHS. But I may be wrong. It's a lot to think about.

  • Depends on your GP I imagine - and if you have been severely vit D depleted it should be checked until it appears to be stable and in a decent range. It isn't that expensive - you can have it done privately for £25 at a lab in the midlands that does vit D for the NHS.

    The "books" say you need both clinical and lab criteria to be fulfilled for the diagnosis of ALS - and the clinical ones are either vascular thrombosis or pregnancy morbidity. So I'd imagine they would check again if you were to develop a thrombosis.

    bestpractice.bmj.com/best-p...

  • Ohhh, good point, will try and find out at the next GP appt. what was in my last test, still looking up links and now will have find out about sticky blood and hughes syndrome...may continue tomorrow opening office at 8am...back to those links :) ML

  • What was your four criteria for SLE? (or more)...ML

  • Constitutional - fatigue

    Gastrointestinal - nausea & diarrhoea

    Malar rash

    Photosensitivity

    Discoid rash

    Positive bloods - ANA, ENA and Anti-RO

    Neuro - mild depression, anxiety, lupus brain fog - so memory problems and confusion, headaches & migraine

    That's all I can think of for now. Hope that helps. x

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