Lupus and GCA/TA?

[Pippah45]

I have an internet forum friend who has been through the diagnostic mill for several months. She was in a UK hospital for Christmas with what was described as a "head infection" and I suggested at the time it might be GCA - but no that was ruled out and somewhere along the line since then she has been told she has Lupus. On Friday she was admitted to a hospital as an emergency in the middle east somewhere and put on IV Prednisolone as they think it is TA/GCA. Does anyone have any experience of the two together? My guess is that it might be PMR and GCA but I hope something helps as she has had a very rough time indeed.

[jinasc]

Lupus is another auto-immune illness.

As I understand it, Lupus, it can and does present as various illnesses. I had a friend who called it my 'sheep' as Lupus = wolf and she was in and out of hospital for many years with some symptoms appearing and could be quite ill, then it vanished.

Some one else will be along who knows much more than me.

In the meantime, I do hope it turns out to be GCA and not Lupus.

[Pippah45 in reply to jinasc]

Eek - that sounds horrible - especially hoping she has GCA rather than Lupus. Auto - immune diseases do love company don't they of course.

[SheffieldJane]

A head infection sounds awful. Was it the kind of thing that can lead to Meningitis? Poor soul. I have not heard of this as an Aetiology for PMR/GCA but illness can be the harbinger of it can’t it? People talk about having a nasty virus then being left with PMR/GCA. I hope she makes a complete recovery.

[PMRpro Ambassador]

You'd be better asking on the lupus forum - I haven't come across anyone with both in over 10 years and 3 PMRGCA forums. I'm not sure - but I think there is someone on LupusUK who has had symptoms of GCA in addition to their lupus, what was decided in the end is another matter. Lupus is notoriously difficult to diagnose and may take years to do so. To have a definitive lupus diagnosis in a couple of months seems unlikely.

[Pippah45]

Thank you very much for the replies everyone. It seems fairly good news that it hasn't cropped up on this forum as a dual problem!

[Horsewhisper]

Hello Pippa45, in addition to GCA, diagnosed in March this year, I have UCTD, which is sometimes called “latent Lupus” or “incomplete Lupus”, diagnosed in April 2018. UCTD is an autoimmune disease in its own right, but does not satisfy the classification criteria for a specific connective tissue disease. As well as a positive ANA, I have many Lupus-style symptoms such as joint pain, muscle ache, fatigue, continuous hair-fall, GI issues, constant mouth ulcers, dry eyes and mouth, balance and dizziness issues, brain fog, Raynaud’s style symptoms and Costochondritis. Fortunately, I can tolerate sunlight, have no issues with the skin and no malar rash.

Both conditions are reasonably well managed with meds and I am able to have a fairly good quality of life supported by healthy diet, moderate, regular exercise, daily fresh air, keep doing the things I can do and finding work arounds to the things I can’t. Help/support/love from friends and family is key too. I hope your friend starts to feel better soon and gets a treatment plan in place to get her back on the road to recovery. It must be an awful shock for her, but it sounds like she has a really good friend in you to look out for her. I hope this helps.

[PMRpro Ambassador in reply to Horsewhisper]

Knew there was someone!!!! Thank you!

[Horsewhisper in reply to PMRpro]

My pleasure!

[Pippah45]

Thank you for that reply very useful indeed. Understandably she is quite frightened at the moment.

[Iwillwin123]

Well I have now been diagnosed since 1 year with GCA and since 2 years with Polycythemia Vera as well . The thing is that prior to diagnosis I kept getting intermittent serious skin eruptions on extremities , large in size and red in color which turned black over time. And no one could diagnose it properly . This was then guessed to be discoid lupus ??? OR UV sensitivity. But only a guess. I now realize it was due to the GCA maybe or as one hypothesis said it was a case of latent chicken pox virus getting activated when immunity was down and which in turn triggered the Internal inflammation of GCA and also lupus like symptoms. I subsequently started Valcivir to cover the chicken pox virus hypothesis as well as prednisolone and have never had those lupus like symptoms again . Incidentally the other things I suffered - some without without diagnosis over last 15 years was - uveitis of eye (5 episodes) , schwanomma of left iliac fossa ( surgical excision ) and 5-6 episodes of serious skin eruptions ( lupus - like ) and rheumatoid Arthritis.

I can give you the Valcivir dosages I am using if you are interested. Please be aware this is just a hypothesis but I went ahead since it is mostly harmless ( except to check liver regularly ) and I was desperate .

I believe the Valcivir gamble worked . Maybe a useful area for research.

[Iwillwin123]

By the way no doctor will agree to the Valcivir story - but I went ahead and used the knowledge from few scientific papers that I found wrt varicella zoster / GCA/ connection as a guide. I would say that since I started Valcivir , all my symptoms - which included at varying times Raynauds ( Blue toes ) , severe mouth ulceration , dry eyes , lupus like Malar rash - never showed up again .