No treatment options available to me

[riannabri]

I was diagnosed recently with Hughes/Lupus & Sjogrens and they tried me on Plaquanil and the side effects and reaction was too profound, I had a letter today saying that mepacrine could be an option but it is much less likely to work and I could suffer similar adverse effects.

And due to the fact that I had Neurological Lyme Disease in 2006 where I was hospitalised then had nursing care for nearly a year that all steriods and immuno suppresent drugs could not be used and that they do not have any treatment options available to me

What am I to do???

[AnnNY]

So, sorry the plaquenil doesn't work for you. Are you on anticoagulants? If not, perhaps that is something that will help.

If you are in pain, you may be able to take codiene/and or NSAIDS. Also, some antidepressants can help, as can gabapentin or Lyrica.

If you are having neuropathy issues, you can check into IVIG. I saw you have thyroid problems, too. So proper treatment for that may help.

Also, some rheumatologist recommend having a higher Vitamin D blood levels.

It's difficult believe there is nothing to help you at all.

I hope there is. When I was younger I used to spontaneously get into a remission, so I just would feel much better for a time.

Even when we find something to help us, it may stop working or not work as well. It seems like we have to keep searching to find the things that help us, and it takes time

[Atibrat]

Can I ask what side effects you had from Plaquinel?

Tammy

[riannabri in reply to Atibrat]

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.

[GloomyEeyore]

What brand of Plaquinel were you given? Plaquenil now only exists as Hydroxychloroquine under different brands. I was originally given Quinoric and it gave me a bad reaction - nausea, stomach cramps, acid. I was changed to Zentiva and had no problems. Been taking it now for nearly two years.

[riannabri in reply to GloomyEeyore]

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

[Cann]

There are many of us like you, riannabri, where drugs make us worse. Many of us use diet, exercise preferably outdoors to get the vit D, meditations and general lifestyle changes to manage it all because that is all there seems to be to help us unless you can afford complementary help from well experienced, qualified and reputable practitioners and even then they can only help us to help ourselves, it seems. I had Lyme disease, scarlet fever, hands foot and mouth and many others, too, as well as prescribed drug damage, the wrong surgery and complications to list a few. Our bodies just don't want any more trauma or toxic substances as our immune systems can't cope, it seems.

[riannabri]

I am TOTALLY allergic to the Sun due to Lupus.

I was a qualified Nutritional Therapist before coming unwell so eat and live a totally non toxic lifestyle, no chemicals anywhere etc etc

My Lyme was so profound it went to my brain and was hospitalised with nursing care for over a year

I am probably the strongest person I know so this wont beat me, its just tough being unable to walk, go out and so on

But this is my lot and I have to deal with x

[Hidden in reply to riannabri]

I think you sound amazing and relate strongly to anyone who suffers from drugs in this way. I've had three drugs give me the kind of neurological features you describe - Pamiprexole for RLS, Gabapebtin which turned me a bit angry psychotic seeing double, and Duloxetine which did nothing but, after five months of extra dry mouth and eyes - I tried to come off it and became terribly ill - leading later to pneumonia and sepsis. Nothing on your Lyme but enough to help me understand your plight.

I'm on Mycophenolate after having other allergic reactions to four others, including anaphylaxis to Sulfasalazine and Hydroxichloraquine. I'm not really sure it's doing that much, after three months on 2000mg, but I'm tolerating it really well.

I'm told that if it doesn't work then this is the last immunesuppressant that I'll be offered.

But I do have a lot to try yet on the nutritional and exercise front as I've rather let things go in the drawn out process of relocating and being unwell and I'm at least not housebound in the way that you are.

I would just say though that your brain is clearly very intact and you must have accrued a lot of knowledge - maybe there are still alternatives such a vagus nerve stimulation to be found by/ for you? After all you sound like a pioneering type of person who is stuck at home with internet and books - what have you to lose by exploring other more ground breaking, non drug related methods of intervention for your autoimmunity?

[riannabri in reply to Hidden]

Sadly Mycophenolic is an immunosuppressant - so another one not available to me, but I am please you can tollerate it.

I am hoping the hughes blood treatment may help my symptoms xx

[Hidden in reply to riannabri]

I hope so too. X