hydroxychloroquine and nerves

[Daisy1991]

Hi as anyone had nerve related things going on, after having hydroxy.

I had nerve twinges before, but they seemed to have increased over the last couple of weeks and the burning in my toes is getting more regular, the toe burning is a relatively new symptom, started the end September/October. Also I am finding that I keep getting itchy.

I was wondering if it could be to do with the hydroxy or maybe it is just the nerve issue getting worse, not sure about the itching. I have been on it for just over 4 months now with no major issue, except headache and feeling a bit sickly and gassy in the first couple of weeks.

All my other symptoms have now been resolved since taking it, I really hope I dont have to stop it, it has been a life changer.

Any suggestions greatly received thank you

[PMRpro]

Neuropathy IS listed as a rare occurrence associated with the use of hydroxychloroquine which reverses on stopping it:

medsafe.govt.nz/profs/PUArt...

and itching is also a side effect.

Do tell your doctor - so they can monitor it or change the medication.

[Daisy1991 in reply to PMRpro]

Thank you pmrpro for the reply, I will have a word with the rhumy about it. I don't see him till January so I think it may be wise to ring his secretary.

[Shaysuekirk]

I have this before and after hydroxychloroquine. The dr prescribed gabropenten. It helped almost immediately.

[Daisy1991 in reply to Shaysuekirk]

Thank you for the reply, didn't they think it was to do with the hydroxychloroquine then?

[Shaysuekirk in reply to Daisy1991]

It's a lupus symptom. i had it prior to taking the hydroxy.

[Daisy1991 in reply to Shaysuekirk]

Thank you for you reply, I am still undiagnosed at the moment, that is no confirmation of lupus, connective tissue disease etc.

I was having a few nerve things going on before I started it. The cattle prodding as I call it, a quick Sharpe shock type sensation and the burning in my toes have both started since I started taking hydroxy.

The ones I was having before it, and are still having some, were more of a tingling sensation, along with some leg jerking and twitching of nerves, headaches and also some weird memory goings on.

I paid to see a neurologist for his opinion and came out thinking it was a waste of time and money. All he did was do my reflexes, stuck some pins in me to check I had no loss of feeling. Then he asked me to follow his finger with my eyes.

He wrote to me and my GP with his conclusion, which was that maybe I had some type of chronic fatigue syndrome.

I think that was incorrect, seeming though, since the rhumy as put me on hydroxy all my symptoms to do with fatique, joint pain muscle pain hot flashes headaches etc etc, have now diminished.

But anyway sorry for the rant, I will mention it to the rhumy to see what he has to say!!!

[ExtremeDuvetDaze in reply to Daisy1991]

Bev I don't get muscle nervy twitches but I do get really sharp random stabbing pains electric shock type sensations usually in my arms and legs, they're excruciating but only last seconds, I have raynauds but get the burning feet too, it's unpleasant. I had these symptoms before I started Hydroxy back in May, I've stopped it now and still getting them! I'm thinking that this is all part of connective tissue disease. It would be good to get a definite diagnosis wouldn't it, I hope you can soon.

Love Diane xx

[Daisy1991 in reply to ExtremeDuvetDaze]

Hi Diane

Yes it definitely would, I have message you.

Love Bev xxx

[Shaysuekirk]

It's a lupus symptom. i had it prior to taking the hydroxy.

[Tigger11]

Hi Daisy. I have had Lupus for 12years(that I know about) and have taken Hydroxy for 10yrs It has been very succesful at keeping my lupus from getting out of hand. About a year ago i had a similar problem and was sent to a specialist for nerve tests. Thankfully the results showed no nerve damage. But the problem still existed. A few weeks later as i had other issues and was feeling more unwell and tired than usual I went to the GP. As luck would have it I got a trainee who went to town and ordered a whole host of blood tests and checks. The results came back with a very low Vit D level and my iron needed a bit of help which is a recurring problem for me. Both these defficiencies cause tiredness but can cause tingling too.

I'm on my 4th month of Vit D and i'm not quite so tired but also tingling hands and feet are now a thing of the past im glad to say!

I hope you too get to the bottom of the problem.

[Daisy1991 in reply to Tigger11]

Thank you trigger11 I will get it checked