How long to get Lupus under control

[smeackles]

I wonder if any of you who have been living with Lupus for a while can tell me once diagnosed, how long did it take the consultants to get the meds right to get it under control in the first place?

My daughter (mid twenties) started symptoms in April and was diagnosed in June when she started Hydroxychloroquine along side 3 weeks of steriods.

Initially the symptoms (sore rash on face, in ears on feet and hands subsided) but once steriods finished symptoms returned and new ones showed up.

They did put her one Azathioprine alongside Hydroxy (and steriods again) but stopped the Azathioprine quickly as one set of labs hadn't come back from London - still not back a month or more later.

She is now on 3rd 3 weeks course of steriods to alleivate the latest symptoms that started within days of finishing the last ones (lymph glands swollen and painful and rash on face again). This is helping the lymph glands (not face this time) but the down side of the repeated steriods is her anxiety, stress and depression goes through the roof each time on them.

How long is it likely before they make an adjustment and find what meds actually get this under control for the first time? Its like permanent Lupus kicking her down since April and know from here that once settled and under control, aside from random flare ups she may well feel normal again.

Horrendous watching this happen to her with no idea if/when she won't suffer the pain, discomfort and symptoms.

Thanks

[lupie2021]

Hi

It took me 3 months after starting my medication that my lupus symptoms settled down. I was diagnosed in April 21, by July I was feeling more myself and and then was in remission with my meds by September 21. Alongside the medication I changed my diet.

The docs do say it takes 3 months for medication to fully kick in.

Hang in there it all gets better x

[corinusha in reply to lupie2021]

Hello, I was wondering how did you change your diet? No dairy, gluten and meat? How strict is the diet? Thank you in advance!

[lupie2021 in reply to corinusha]

Hello

This is what I did.

Breakfast - Lemon water first thing , Celery juice and cereal (with soya milk)

Lunch - I would make my own smoothie with spinach and kale and have a light lunch which would be chicken and salad or chicken wrap (gluten free wrap)

Dinner - what ever was made I would take out the gluten and have a salad with lots of kale and spinach or lots of boiled veg.

during the day

I would have 3 litres of water

Turmeric tea

Fish oil and vitamins

I would have no sweet treats and no alcohol.

I needed to build up my muscle again so used to do a light workout or go for walks.

I was consistent with this for 6 months and was very strict. Once I felt fully recovered I started introducing things back in slowly.

3 years later I drink alcohol I have a sweet treat and I still do all of the above to balance it out.

Oh and I didn’t give up meat in all this. Was mainly gluten and diary but like I said when I started to feel normal again I brought it back in again.

Hope that helps x

[smeackles in reply to lupie2021]

Thats amazing - you've been very strict but sensible with yourself and its clearly paid off. All positive and helps to know you can introduce things back in future - its not all doom and gloom as it feels at the beginning. Thank you

[smeackles in reply to lupie2021]

Thanks for your reply - I'm so glad you got under control and even went as far as remission - I didn't think that was something that could happen! Thats a dream.

I've just watched her suffer and struggle since April and since Rheumatology appts are several months apart, before they look again and try something else (like the Azathioprine) but living on steriods is awful and not working on skin just other symptoms but her anxiety is off the scale. I'm struggling to help keep her on an even keel and I don't have this disease.

I'm at point of not knowing if or when she will feel herself again. Not to add the insane problems trying to get help through GP for meds.

[lupie2021]

Yeah it is hard. My mum helped me through it all I was at the point where I couldn’t walk or shower myself that’s how bad my symptoms were. I got admitted in to hospital and stayed there for a month, was the worst thing I’ve ever been through I couldn’t see light at the end of the tunnel.

I went in to a really dark place depression anxiety etc I went through counselling and thought to myself I’m not going to let myself get in to this space so I decided to change my diet and tried to train my mind obviously counselling helped.

It’s really hard for you I get it my mum used to cry everyday because she felt helpless. But there is light at the end of the tunnel trust me. It’s going to take hard work but your daughter will get there. Remission is possible I used to think it wasn’t I made a lot of friends with people with lupus and that got me through aswell.

I’ve only just come off steroids think it was December last year. Really didn’t want to be on them.

When I was first diagnosed I had appointments every month so strange why it’s 3 months.

Sorry for rambling always like to speak about my experience x

[smeackles]

So appreciate hearing yours and others experiences - gives me hope light may be there, we just can't see it yet.

It can be so debilitation and hard as she recently started a job in the field she wants to be in - after looking 2 years after leaving uni (started 3 days after confirmed diagnosis). And its hard going, long hours and travel - so trying to cope, mask symptoms so she makes a good impression and not be an obvious hinderance is a huge ask when symptoms and side effects are hitting hard. Timing is weird as bad but a great distraction from suddenly being told you have this life long condition.

So glad to hear that it will get managed - just hoping its soon so she can stay on this path she wants to be on and not lose the future opportunities.

Thanks for sharing

[lupie2021 in reply to smeackles]

Give it time she will be fine.

Good luck with her new job would be a great distraction for her.

Any other advice you need just message me

[baba]

healthunlocked.com/redirect...

On the main Lupus uk website there is a list of downloadable publications, including ones about employment. One called something like “I want to work” for employees and also one for employers. Worthwhile reading both.

Sorry having trouble attaching direct link.

Best wishes to you and your daughter.

[smeackles in reply to baba]

Thank you will give that a good read. They are supportive of her - its just is a trainee position which when finished will have to find the next one and doesn't want to gain a reputation of being a problem so hard to find a job.

[baba in reply to smeackles]

I understand.

[DogHospiceMom]

I had to go off the Hydroxychloroquine because it permanently damaged my eyes. I refused to try another med. What I have found is that diet plays an enormous amount of managing issues. I have to not drink alcohol, no sugar, caffeine and watch carbs. I know immediately if I eat potato chips, I will start with skin lesions. It’s hard, but the difference in symptoms is worth it.

[smeackles in reply to DogHospiceMom]

Really sounds like what we put in our body’s impacts lupus more than you’d think. Thank you for your reply x

[Spanielmadlady]

Hi smeakles. No one can say how long it takes because we are all individuals who react differently to medication. It is a case of trial and error finding the right drugs combo and dose that works for your daughter.My lupus journey started 10 yrs ago but was only diagnosed in 2018.I too so was given azathioprine. After 7 weeks I started being sick...I had developed drug induced hepatitis. I then had to wait 3+ months for my liver to recover before I started mmf so in all it took almost year to find the drug that helps me. After 5 yrs on mmf I'm still steroid dependent unable to reduce below 7mgs so now the plan is to add in tacrolimus to try and reduce my steroid burden. We are so complex.

Reducing stress to an absolute minimum is essential as stress is a major trigger for us lupies. Reducing Uv exposure both indoors and outdoors plus getting plenty of sleep may help alleviate some symptoms.

It's hard to go through and to watch im sure but you have to be patient...there is no quick fix with Lupus unfortunately.

Best wishes to you both

SML xx

[smeackles]

Complex is most certainly the word - and i do understand everyone is unique and reacts differently to medications/have differing symptoms etc. What you say about your experience of azathioprine is a little worrying in that they started her on that alongside the Hydroxy then stopped it almost immediately as waiting on labs from london before allowing her to continue (and did say she would need to have very regular bloods if she was on it).

Which suggests to me that it comes with more potential side effects or problems.

Half hoping they don't advise to restart it.

She has become most concerned about being outside (regardless of factor 50) and hates and protection, but this is maybe amplified by the rash and sore skin on her face being particular bad recently (very stressful week just had trying to sort meds around work) so avoiding UV exposure is definitely top of her radar. Stress and anxiety are the archilles heel right now.

Looking into Magnesium suppliments as another element to help there.

Thank you for sharing your thoughts and experiences.