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.
ML
