Polyneuromyopathy & Eye Toxicity

[ToxicTina]

Hello first post so be kind

Looking for anyone who has had Toxicity of Eyes, muscles & pheriphal Neuropathy damage from Hydrochloriquine?

Any treatment to combat symptoms of muscle wastage, nerve damage, loss of central & peripheral sight, tinnitus and hearing loss?

Plus how long before the damage stopped?

It’s hard to find info online accept for eyes. So would be grateful for anyone who has walked my path?

Plus if you had a specialist who effectively treated you and has knowledge in toxicity?

I am not here to debate Hydroxychloriquine. I am diagnosed with this issues. Just looking for any valuable experience from others in getting through it?

[LottieLou96]

Hey there, sorry youre having a rough bout.

Are you still on HCQ or have they reduced your dose down and how long have you been on it?

I only know what we would do for acute toxicity not gradual toxicity because I would assume the damage occurred over a long length of time.

Sorry I can't be of much help

Lottie

[ToxicTina in reply to LottieLou96]

Hi Lottie Thanks so much for the reply.

I took Hydroxychloriquine for 3 years. I know everyone including myself said that cant be right its a long term issue and so rare.

The conclusion the Doctors I have been seeing is that as I was recovering from a nasty Gall duct/Liver Inflammation/infection that my body metabolized too much. My dosage was a little too high for my weight too.

I have now been off it for 7 months but so disappointed this week that the Neuropathy has moved up from mild to moderate-sever nerve damage in 5 months since my last EMG

I'm currently on B12 injections monthly as it seems to have set off immune deficiency's & L-Cartine Enzyme to help with the muscle Myopathy which is working very very slowly to improve some muscle mass coming back.

My Lupus bloods are all showing to negative for activity combined with deteriation in the Neuropathy testing which means the medication & Toxicity is still in my plasma.

I have had some good news today a Leading Professor in London has agreed to do a zoom meeting to see if he can help further. This I am so happy about as finding someone with experience of this problem has been so difficult and we all know there is a lot of difference between knowing what treatment works on paper and working with a patient with Toxicity and that valuable experience.

I didn't expect a lot of replies as I know its a rare reaction & I have met on help boards hostility as if Hydro meds work for you and they do safely with the majority of people they don't like you bringing up the other side of the coin the rare time it hasn't. So thank you for taking the time to reply & being kind. Its a lonely journey at the moment. Wishing you well Tina x

[MrsMarigold in reply to ToxicTina]

Hi Tina. I’m so sorry this has happened to you. You are right it is rare. I’m glad you have an appointment with someone who can help. Plz check back in and inform us how you are getting along. I take hydroxy and have my eyes checked every 6 months. It is an appointment I always dread even though toxic side effects are very rare. This is a caring community so plz let us know how you are doing. Best, Titters

[ToxicTina in reply to MrsMarigold]

Thank you I’m glad it’s helping you so much.I will it seems a supportive place Tina x

[LottieLou96 in reply to ToxicTina]

Hey Tina 💜

Its hard to have toxicity and neuropathy due to 3yrs of HCQ use. As you know and say, toxicity continues for months after cessation of the drug, dependent on your cumulative dose/see concentrations reached when you were on HCQ. HCQ is partially metabolised in the liver but is mostly metabolised by the kidneys but that could be the issue as you say. Hopefully the worse has already come for you, because some effects of toxicity and neuropathy can eventually improve but some damage can sometimes be permanent as I'm sure you know. I hope and pray you get the help you need, and hope as I say the worst has come. I hope you get some help in the coming months and please let us know how you get on. HCQ toxicity and neuropathy is becoming a much more common issue on HCQ, 7.5% retinal toxicity is suggested by AAO at 5yrs. 2-4% peripheral neuropathy noted at 10yrs. Hopefully the vitb12 will help as well with the neuropathy

All the best

Lottie

[ToxicTina in reply to LottieLou96]

Hi LottieThank you so much.

I think it’s guess work on the Liver issue increasing the absorption. My doctors are lovely and trying to help but each one wants to do it’s own testing. Every few weeks I have a priority symptom see the corresponding doctor, more testing and conclusion and not sure how to treat it. It’s been exhausting. 2 A&E admissions and about 30 plus appointments/testing in 8 months. I am a really positive person but gotta admit this has been very challenging at low points.

I will come back and update after I have seen the Professor.

Thanks again for the support xx

[Partner20]

No personal help to offer here, I'm afraid, but just to sympathise with you regarding the negative reactions that can he shown by others when confronted by cases that do not follow a *normal" pattern. My partner is similar in that over recent years he has presented abnormally for various conditions, so has not been helped by many in the medical community, resulting in some conditions degenerating and their treatments more extreme than if he had been correctly treated in the first place. At least his GP has now learned to listen to him! Yes, unfortunately social media and some health sites can be hostile if you do not conform to what others experience, and I'm sorry you have had to face that. I can only send you my very best wishes for future help and a good outcome.

[ToxicTina in reply to Partner20]

Thank you so much. Lupus is a crazy condition we are all so different what works, doesn’t and how we suffer.

I’m sorry your husband too has faced issues and judgment. I am glad to hear he’s finally getting the help he needs. I do think often the treatments can be as challenging as the disease. Must be hard to see him suffer. I know it hurts my hubby so much to see me struggling with all this.

I had one moderator from a support group describe what I had written as a horror story which just doesn’t happen in the amount of time I took the medication and everyone else she knows tolerates it well.

I’m glad they do and it’s helped them but for me it’s been hell on earth.

I state again like I always have, prescribed at the correct dosage and monitored correctly hydro is a great medication for Lupus. I am a rare minority.

It’s bad enough we get dismissed by doctors at times but to have real difficult issues trivialised when the reality of coping with losing your eye sight, hearing and mobility is extremely challenging. The fear of how long it will progress.

Anyway thank you for taking the time to respond.

Not easy when things go wrong so hope your hubby starts feeling better soon Tina x

[stiff19 in reply to Partner20]

great reply 👍 pleased to hear doc now listens to him, your partner but those years were undoubtedly hard. best wishes

[Sashappy]

I noticed that after a few months of taking Hydroxychloriquine, when I reduced down to alternate days, I started experiencing some hearing issues and a touch of tinnitus which I never had before. I had my hearing checked at the hospital recently and was told my hearing in my left ear had dipped a little which is normal with aging. I was also told that stress affects your hearing and can cause tinnitus and I am under immense stress all the time. My hearing has improved in the last few weeks but I still experience hearing and tinnitus on days. I have suffered pheriphal neuropathy in my hands and feet for years. This is years before ever taking Hydroxychloriquine. I hope you find a solution for your problems x

[sunrise]

I'm so sorry you are having such a tough time of it. I don't have anything useful to add or experience of what you're going through. I just wanted to wish you well and I hope things are improving for you really soon xx

[stiff19]

Sadly no advice but best wishes

[ToxicTina]

So 4 months on…the neuromuscular toxicity damage is greatly improved back to mild. oesophagus nerve damage is healing & I can swallow much better 75% improved. Got a lot of regeneration fizzing in nerves uncomfortable going on but my neuro put me on a very lose dosage of gabapentine which has been amazing & allowed me to do pool exercises. Muscles about 50% rebuilt & im a little steadier walking. Our goal is back to normal EMG & symptoms in 6 months. Plus I look less like a skeleton as put about a stone back on. The only bad side is my eye toxicity has deteriorated a little by a further 10% but I can live with that. I thought I would put an update as I know this is rare but it’s so hard to find info if you find yourself with the rare HCQ toxicity & it may help someone in the future with hope & how to navigate it & what timeline of 14 months to this point & 20 months hopefully to be getting some normal back. Thanks to everyone’s encouraging comments last time it really helped at a bit of a low point 💜