Any Treatment Options?

[sloppydog]

I was diagnosed 3 years ago with Lupus/Sjrogens/Hughes (already had Hashimotos's)

This came on or was triggered after being hospitalised with severe Neurological Lyme Disease where I was hospitalised for many months and with nursing care at home for nearly 2 years back in 2009 - I never really got better and was finally diagnosed with Autoimmune disease 3 years ago

The relapse 3 years ago was so bad I lost all my mobility but the treatment options I had were very limited as they could not give me Immunosuppresents in case they reactivated the Lyme Disease ....... Going forward they tried Plaquanil and I had an adverse reaction to it and had to come off it

After the relapse I started to improve just with acceptance, rest etc and was able to do small amounts, was out of the house a little and felt improved, doing very little but could manage some things (so about 5 % of what a normal person did but was no longer bed bound) and in the 18 month stayed at this level

Just before Xmas I got 2 bouts of Flu and her is the strange thing after this I was the best I had been in years, I could walk a little, danced one night - It was like my immune system reset itself a little and it was amazing for about 2 weeks.........Sadly afterwards I went in to the worse relapse I have been on ever, worse than 3 years ago and have been debilitated for 3 months now, I can hardly even crawl to the loo - My legs and knees are so painful and I feel like i'm dying !!!!

It feels like its all being driven my my thyroid (as that is constantly up from the Hashimotos's) and like my immune system is in utter chaos/overdrive

I am therefore wondering if its time to suppress it and see if the Lyme does come up and deal with that at a different time

The strange thing is although my immune system feels like its destroying my body, tissues, joints etc on the other hand it must be low as I have had shingles

TOTALLY confused but needs some treatment options

Lyme doc said NO steroids so wondering if Methatrexate or pulsed low dose Chemo may be the way to go

Advice or input needed before I speak to Lupus centre next week

Thank you for listening xx

[Lupiknits]

I really haven’t any advice at all, but please accept a hug. You have been through so much x

[Hidden]

I second Lupiknits - I really feel for you.

I haven’t had Lyme but I have run out of treatment options I’m able to tolerate. I have Hashimoto’s and Sjögren’s - previously misdiagnosed as RA.

Mine hasn’t immobilised me but it has proved very debilitating and life changing. I keep being told that my struggles are no longer autoimmune but are now either functional or wear and tear - depending on which specialist is describing it. I see my neurologist again in 2 weeks time and then the CTD doctor or rheum again at the end of this month. So far they have all said that there are no immunesuppressant treatments now which are worth the risk or that I haven’t already tried and failed to tolerate.

Like yourself I get totally inexplicable week or even month long spells of remission - followed by return of symptoms with a vengeance.

Mostly my body seems to respond quite well to short events or deadlines or ambitious holidays - fuelled by adrenalin - but in the following weeks and months mean I will crash and burn so the price is always high.

Sometimes I think I need my adrenal function looking at rather than the focus being on my immune system. The relapse/ remit aspect is very hard to bear so I can understand and rebate to your terrible disappointment at relapsing - which seems to last much longer for me than the periods of remission. It also means that pacing is virtually impossible.

The neurologist says that the software and hardware/ mind and brain are the problem now but I don’t see this personally because I feel the random spells of remission wouldn’t make sense if this were so. I suspect that, due to there being no treatments they can viably offer me, it’s easier for them to blame hardware/ software - or overlaying conversion disorder rather than blaming my Sjögren’s or an other overlapping seronegative CTD.

I can say that the latest flare up presented in severe daily headaches and nausea and, despite being told this wasn’t sinus or ENT related - a severe episode of right sided throat pain culminated in terrible pain in my ear during a flight and now all ENT pain and headaches have settled?! Weird eh??

[sloppydog in reply to Hidden]

How strange, a few years ago before diagnosis I saw a Horrific Neurologist in London who stated I had conversion disorder and all about soft & Hard wiring - I then finally got diagnosed by Prof Hughes at London Lupus Centre, I winder if you and I saw the same Neuro?

[Hidden in reply to sloppydog]

No mine have all been in Scotland but I guess it’s a bug that has infected many in the profession!