Diagnose with the Big 3 - Hughes/Lupus/Sjögren's What now?

[riannabri]

I was diagnosed by Prof Hughes and Dr Lanham at London Bridge Lupus Clinic Last Monday with Hughes/Lupus/Sjögren's running alongside Hashimotos

I am in a very difficult situation as I what totally allergic to Plaquanil but they can not give me steroids or Immuno suppresent drugs as I had Neurological Lyme Disease in 2006 where I was so ill I was hospitalised and on IV treatment from 2006-2011 so they cant risk lowering my immune system - so basically they have no treatment options for the Lupus/Sjögren's - Which is terrible as I am so disabled

But I assume they can treat the Hughes - If so what is used for this and could this alone give me some relief as I am unsure what the hughes is causing?

[HollyHeski Administrator]

Did they not give you anything once they diagnosed you last week? I am allergic to some brands of Plaquanil, had to go through several makes before I found one that I could take - there is a particular brand that the administrators suggest - on the pinned posts.

Treatment for Hughes is anticoagulants - there are various options, which Prof Hughes can try you on.

I'm sure the administrators can explain more options for you.

I have SS and Hughes, its been trial and error for years, but these conditions are now under control - so keep with it, you're get there.

[riannabri in reply to HollyHeski]

They started my treatment with plaquanil, I took Quinoric and then the branded product by Zentiva - the seizures/mental and neurological stuff were so profound I am never to take it again and was told There is another drug called mepacrine but it is much less likely to work and you could suffer similar adverse effects.

I was then told - they could not use the next level of drugs, the immunosuppressives because of the risks (due to my past lyme disease). then they said .......therefore at this moment in time there is no useful course of action to suggest, only to treat the Hughes

I have an appointment in May

[MaryF Administrator]

Hopefully this team will come up with the best move forward for you, you are in good hands. I can't tolerate Plaqenil either. MaryF

[kezzie]

Thinking of you. I have all three too but can tolerate hydroxy chloroquine. Can you even take a low dose steriod? Because surely that would bump up a bit of energy for time being. You will have to go on blood thinners, I'm asthmatic so have to have dypridamol. Sjorgens is probably secondary to the SLE but there's eye drops, mouth sprays etc available for some relief. Do look after your teeth even more now, i really would recommend that and visit your dentist regularly. I think go to your GP for options of what your going to do until May. Because that is a long way off when your feeling this bad. I hope you have proper pain relief.

Kezzie

[riannabri in reply to kezzie]

No Steriods whatsoever, took pred for a very short time and I had a major Lyme relapse in 2009 and had to be retreated with IV antibiotics, so they just cant risk it. I think the blood thing for me is HUGE so that may help - All above my GP i'm afraid, I have been this sick for so long a couple of months wont make a difference xxx

[WendyWoo50 in reply to kezzie]

I have all three too and HClQ affects my heart condition so I take Mepacrine instead.

It's a case of keeping on top of each symptom:

Feet: i see a Podietrist every 4 weeks who clears the build up of dry dead skin from the edges of my nails and gets rid of the overgrowth of dry skin on my heels. Use a good heel balm. Like CCF gel.

Skin: Use moisturiser on ur body and a good quality on ur face & neck.

Joints: Take omega oils (prescribed for me at London Bridge). To keep joints lubricated.

Intestine: I take Fibro gel sachets morning and night to keep bowels going, and from health shop Slippery Elm. (Keeps intestine lunricated.

Vitamins: I take vit C with Rosehip daily to keep colds at bay.

Mouth: Clean teeth well & after use a good mouthwash. I chew sugar free gum (discreetly) when mouths dry.

Hydration: it usual to feel really thirsty so... Drink lots and lots of fluids. Plenty of water. Caffine free drinks if possible (u soon get used to it)

Eyes: it's trial and error with eye drops, gels and sprays. Have anual visits to optician. Tell them u have Sjogrens and that u want them to check ur eyeball for 'divots' alterations to the surface of ur eye caused by dryness that can lead to blindness. I also have my field of vision tested yearly.

Hair: as the hair follicles are moisture blobs, they may dry out and hair may break. I lost my eyebrows and use wonderbrow - u paint it on and it stays on till u take it off! (Better than melting of with hot turns lol)

Liver: it's important that liver function tests are done on ur blood regularly as it often is affected. I have it done monthly.

Blood Thinning: I am able to have Warfarin but the Hughes makes the INR erratic. Make sure they set a high INR for u. I've had quite a battle but have got there now and that alone is making me feel much better!

Mind: I find the most important thing I do is to set myself a task to do every day. It's important to have something to get up for !

Complementary help: I find Accupuncture helps my pain, I find Reiki helps me sleep, massage keeps me going, meditation helps me keep calm and relax and cope.

When things are getting on top of me, I write down how I'm feeling it helps to get it all out. I hope u have someone u can trust to talk to its important to tell someone how u feel. We are a supportive bunch on here too 😄

I've shared the things that it's taken me decades to work out, I hope it helps u. Everyone is different so good luck working out ur way forward. 💋