Dermatology Appointment - Steroids

[Wendy39]

I had a further Dermatology appointment on Tuesday. As some of you will know I have SCLE, (DLE & SLE symptoms) diagnosed in 2013 with a positive ANA and Anti-RO blood test, plus many symptoms but no internal organ involvement. I have been struggling with increasing symptoms and flares getting closer together for a while, to the point where I am working out my notice at work. My Rheumatologist doesn't seem to know what to do with me and has only ever prescribed the hydroxy at 400mg a day. I have a relatively new Dermy who can see how much I am struggling and wants to help. He gave me info on 2 immune suppressants at my last appt. At this one, he asked how I was and I told him about my feet not liking sandals, skin gets very dry and very itchy, I have spots/boils on my face and the diarrhoea I had had for 4 days. Sun/heat induced I think. He said that I am a difficult case, (not for the first time). As my bloods are all normal, except for the CRP at 6. But that's not a big problem. So bloods don't tell the story for me. He wants me to go onto steroids at 20mg prednisolone for 2 weeks and then taper 5mg per week for another 3 weeks. So 5 weeks in total? I think that's right. So, he says if I feel better on the steroids then that shows that my symptoms are Lupus and he can justify putting me on the immune suppressants. But if they don't help, we'll have to look at this an another angle. I can see his reasoning. Makes sense to me. I have never taken steroids like this before. Only ever 2 x short 5 day course before I was diagnosed to clear up a rash on my arms that turned out to be a sun sensitive rash. So, I guess I am hoping that the steroids work and make me feel good. Might be good with the hot summer weather here, which is so draining for me. Otherwise I'm not sure how I'll feel or what I'll do. He explained how you cannot take steroids long term. That immune suppressants are the better option long term etc. I understand all of that. I also know that the hydroxy isn't enough for me. It's scary. But I am grateful for his belief in me and for his wanting to help. Strange what we wish for sometimes isn't it. Anyone else taken this approach, to see if their symptoms are Lupus? Any tips for taking the steroids.

[Barnclown]

Hello Wendy & thanks for this update

I'm sure you'll get good replies

I just want to congratulate you: I like the way you're thinking..and I like your dermatologist's attitude. This is scary...I remember feeling v unsettled...but our wonderful forum helped me through this trial & error stage...making all the diff for me...and my lupus clinic lupus specialist nurse was vvvv supportive in between clinic appts...sounds to me like your medics are bring supportive...and it's great you're here with us too 👍👍👍👍👭👭👭👭

The approach your dermatologist is taking sounds very like the approach taken in my case by my hero rheumatologist during the first years on lupus meds since my infant onset lupus diagnosis was recovered in my 50s (5 years ago)

Initially I did respond well to daily hydroxy (400mg) and when we felt more power was needed, I also benefitted from 4 week 10mg pred tapers. At that point my lupus diagnosis seemed to have been confirmed by how I was benefitting from lupus meds + by clinical examination, medical history, certain immunologic blood results (low immunoglobulins, compliments & lymphocytes)...we're sure I've been sero pos during flares over the decades, but over the past 5 years, I've been sero neg (possibly due to immunosenscence after a lifetime of lupus going without systemic treatment except in emergencies)

So next I was tried on daily mycophenolate cellcept (an immunosuppressant) instead of going onto daily low dose pred. After a year or so, we decided my therapeutic myco dose was 1000mg daily which is relatively low and helps me a lot. Eventually we decided I also need daily low dose pred (7mg or less) which I manage myself depending on how I'm feeling....sometimes I need higher dose pred, but usually I can manage on 3-5mg.

So, what medics describe as my "therapeutic dose of daily combined therapy meds" is a relatively low dose daily package of prescription meds...and this means a better risk-benefit ratio. Of course I still have to lifestyle manage agogo...but that's living with immune dysfunction & connective tissue disorder, right 😉

I'm so glad you're here...please keep us posted on how things go

🍀🍀🍀🍀 coco

[Wendy39 in reply to Barnclown]

Thank you Coco for your very helpful and wise reply, as always. Much appreciated. The two immune suppressants we are considering for me are: cellcept (mycophonalate mofetil) and imuran (azathioprine). I am thinking that the cellcept might be my best option as it treats vasculitis (according to the info given to me) and although this hasn't been diagnosed or documented by my cautious rheumy, she has mentioned it verbally more than once and I have a feeling it is there, in the background. But I must see how this course of steroids goes now. Might be perfect timing for helping me deal with the sun and heat we are having. Thank you again and best wishes. Knowing that I can post on here and get such great advice, is so reassuring when we are faced by these decisions and the unknown.

[Barnclown in reply to Wendy39]

Grrrreat 👏👏👏👏

I was extra happy too with the idea of trying myco because my lupus is the Vasculitic type, as is my ehlers danlos

😘🍀

[Wendy39 in reply to Barnclown]

I haven't been told when to take it, or if I should take the 4 x 5mg altogether? Morning? Evening? Spread the 4 tablets throughout the day or take all 4 together? Any tips gratefully received. Thank yiu,

[misty14 in reply to Wendy39]

Hi Wendy

Sounds like you have a great Dermy who really wants to help you. Best to take the steroids altogether at breakfast so they don't affect your sleeping . I would just say you can take steroids long term but a lot of care has to be taken and the doses are much lower to minimise side effects. I really hope they work and you feel better soon. You might get an improvement quickly. X

[1985mum in reply to Wendy39]

Just want to say be cautious with the Imuran for long term. My brother was on it for nearly twenty years for AIH and they have changed him across to another drug (I don't know which one, sorry) because it had proven links with development of cancer when used long term. Not trying to scare you but just something you might want to discuss with your doc.

[bluebell99]

Hi

Take all your daily steroids in one go at breakfast time, but make sure you do have a proper breakfast, not just a biscuit. This should stop any indigestion or tummy upsets.

I took azathioprine for about 7 years or so, they were very effective and helped me keep a clear brain. Unfortunately I developed renal cancer and had to come off of them. My rheumy said that azathioprine did not give me cancer, more that being an immunosuppressive drug it stopped my body's own natural defences against cancer.

I am not on any immunosuppressives even though I am 6 years clear. In one way it is a shame as I did really well on them but I understand his reasoning.

[Wendy39 in reply to bluebell99]

I usually eat Belvita breakfast biscuits with 2 coffees in the morning, as breakfast is a on the go in the kitchen, empting the dishwasher and helping the children get their breakfasts and drinks. I rarely actually sit down. I will have to see how I get on with it. Day one - took the first 4 tablets this morning. Thanks for your reply.

[maggielee]

Hi Wendy,

Just to add that I was given steroids to start with and I agree in the am with food. They did make me feel better and to realise that there was something wrong with me, as I started to feel normal again (prior to my diagnosis). Was prescribed them twice. I was asked to reduce them slowly over time, I guess as a weaning off process. I hope they help. Feel better.

[Wendy39 in reply to maggielee]

Thank you for your supportive reply maggielee . I am really hoping that the steroids work for me. Firstly to make me feel better and secondly so we know that all my ongoing symptoms are lupus (except my OA of course). Otherwise I guess the diagnostic process starts all over again, which would be deflating. Chin up. Positive thoughts. I must personal message you re meeting for a coffee.

[maggielee]

I was thinking about today ie steroids really helped me when I was really, really tired and I had to work and all I wanted to do was stop and take a nap. I hope it will work even short term to give you a break. Gosh I hope you do not have to start the diagnostic process that sounds very disheartening. Lots of positive thoughts for you and yes coffee/tea, heading at the end of the month to dermatology myself and not looking forward to it. We will see...dare to see the light today felt good to try in an overcast day...good luck.