Anyone been treated with Plaquenil (hydroxychloroquine) subsequently discovering it also helped CNS vasculitis or other systemic vasculitis?

[RareLily]

[AllyGY2013]

Hi,

I've been taking plaquenil for over a year now, was on prednisolone originally but was taken off after only a short time and put on plaquenil. Have been told I have vasculitis, rheumy believes it's GPA.

[RareLily in reply to AllyGY2013]

Hi, This is good to hear. I have suffered from urticarial vasculitis in the past and also have petechiae. I know that Plaquenil is used for vasculitis of the skin (cutaneous), although not generally prescribed for more severe systemic types. Still, I would like to try plaquenil to see if it helps before taking something more toxic. May I ask what symptoms you had/have... and if they or blood tests improved?

[AllyGY2013 in reply to RareLily]

Ask me whatever you like, if I can help I will.

In short - I started with a flu virus that left me with a dry cough that just wouldn't go away and my sinuses were painful. Then I developed joint pains that were so bad I cried, fast onset rheumatoid arthritis was suspected but x-rays were clear. I was put on prednisolone. A facial rash (butterfly rash) led to the diagnosis being changed to lupus. I don't produce tears – sjorgren's syndrome – was taken off preds and put on plaquenil. Poor circulation in my hands and feet - they turned blue/grey when cold - ?Raynaud's disease. Purple areas, each about the size of 5p piece, on the lower part of my arms, along with continuing other symptoms and a positive anca blood test result led to the diagnosis of vasculitis.

Generally I'm doing ok, I do wonder sometimes if another drug might get rid of the gripes I have but then I consider that the side effects of those drugs which would probably be worse; why meddle when I'm coping and my blood test results have improved? My last ones were virtually normal, my positive anca has reverted back too; although I heed other members of this site that how I feel is far more important than what the blood test results are, as they can be misleading.

I do still get some cramp-like pain in my calves and feet. My breathing has improved and I get less pain, my joints are virtually pain free.

I currently take/use thyroxin, viscotears gel, plaquenil, zantac and naproxsyn.

The thyroxin for underactive thyroid, viscotears gel to moisten my eyes, plaquenil as the immunosuppresant, zantac for acid reflux as the dry cough improved but didn't totally clear and naproxsyn is the anti-inflammatory that keeps my facial pain and sinuses under control.

I definitely notice a difference if I don't take, or am late taking, my meds as my symptoms are much more noticeable.

[Gabzy in reply to AllyGY2013]

You sound like you have Lyme disease, especially the flu like onset. Check out lyme in your area. I have lyme and vasculitis.

[Galaxy2]

Hi There

I have been taking hydroxichloroquine for quite a few years and was originally prescribed it for joint pain after being diagnosed with sjogrens/lupus and curtaneous vasculitis. Sometime after that I developed nervous system involvement as a result of vasculitis and have since taken steroids and mycophenolate, although I was told the hydroxichloroquine wouldn't help the vasculitis I know it helps with my main symptoms. It was only when my eye sight started to be affected and my GP thinking it could be a result of hydroxichloroquine told me to stop taking immediately and subsequently my symptoms worsened that I realised how effective it was and have stayed on it ever since.

Jenny

[Tinabelle]

I was diagnosed with CNS Vasculitis. Also Lupus, RA, CIDP. I've been on Plaquenil for about four years and it definitely helps. It took a few months before I noticed a difference though. It beats steroids and has very few side effects compared to many of the other immunosuppressants. You do need to get your eyes checked every six months or so as there is a very small retinal side effect that can happen. It's very rare though. If it does happen you just have to stop the Plaquenil. Best of health to you!

[janjon]

My son has been on hydroxychloriquine for 18 months and recently had the dosage doubled to 400 mg a day. However it isn't helping as it once did, and he is going back on prednisalone - 20mg daily- to try to get the flare ups under control. He has leucocytoclastic vasculitis with kidney disease - igA nephropathy. He has yearly eye checks and there hasn't been any problems. He doesn't have problems with sensitivity or pain but he has an unusual response to pain etc. due to his autism.

[Fixmecc]

Your situation sounds exactly like mine. Mine just beginning a month ago. I have been prescribed so many different drugs and they all have the most terrible side effects including prednisone. The only thing I'm on now is prednisone because my rheumatologist at Mayo clinic cannot figure out what I have. LOL. But I'm tempted to take the Plaquenyl because it was prescribed to me previously by two different doctors that were rheumatologists where I used to live. My most recent diagnosis being vasculitis from before being lupus, rheumatoid arthritis, Schroegens, osteoarthritis, and now vasculitis. Nobody has a clue. And honestly I don't really have any symptoms except for those of rheumatoid but my symptoms are extremely severe where it just totally paralyzed me with the most excruciating pain one morning suddenly when I woke up., I have been in this pace since for a month now. Without prednisones I cannot walk, I cannot drive, cannot get dressed, cannot move without screaming. I've also been diagnosed with fibromyalgia which we all know there is no treatment for.. I think I will just start plaquenyl on my own accord and see what happens. Your Thoughts?