Hi everyone. Really hope this message finds you all keeping as well as you can. 🤞
Having been diagnosed with UCTD a year ago, my main issues, amongst everything else, have been with small nerve issues and hair loss. I had a Rheumatology appointment in December but have heard nothing back yet. During the consultation, it was agreed that I come off Amitriptyline as it had no effect on the burning, prickling, stinging and nipping, especially from the waist down. I thought I would get feedback after the blood test results but haven't heard. I have been in touch with the department who took details and mentioned I might want to consider Gabapentin. I'm reluctant to do so due to the reactions my mum, who has epilepsy, has had to many epilepsy drugs. Long winded way to get to my question but I was wondering if anyone has taken Alpha Lipoic Acid (saw this mentioned on NHS website as an alternative supplement) for these issues and if it helped at all?
Also at my consultation, it was suggested that Hydroxychloroquine can be a cause of hair loss so I should think about reducing my dose to every second day. Has anyone had their dose reduced to combat hair loss and has it helped at all or has other CTD issues been exacerbated?
Sorry for the long message but any advice would be much appreciated as being prone to anxiety, not just due to but not helped by UCTD, the stress is getting too much right now. I need to bite the bullet and see my GP about that! Thanks for taking the time to read this - and hopefully replying. x
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RMC17
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Hiya. I've been taking Hydroxychloroquine for around 9 years. They reduced the dosage, following new NICE guidelines about 3 years ago so I take 200mg then 400mg on alternative days. When I was first diagnosed with SLE I was experiencing hair loss, but that hasn't really been an issue for several years, so I haven't found the Hydroxychloroquine has affected my hair negatively. I'm not sure how helpful this is for you, but I wish you all the best.
Hi Julsz. Any feedback is helpful and welcome. I'm not entirely convinced it's the Hydroxychloroquine alone. Since coming off Amitriptyline two months ago, still losing hair but not to the extent I was last year. Hopefully can get the chance to discuss this further with rheumatologist! Amitriptyline was never mentioned as a possible cause.
I was diagnosed with UCTD in 2003/4 and put on Hydroxychloroquine, which like you resulted in some hair loss. The hair loss lasted approximately 12 months and then stopped. My hair then returned to normal in about 3 more months, but instead of my hair growing back straight, it now grows wavy! My hydroxy was reduced 3 years ago and I now take just 1 a day and have no problems with hair loss.
Again like you I also suffered with Small Nerve problems and Gabapentin was suggested. I gave them a go but they didn’t work, so I was then put on Duloxetine and I take 3 a day. They have worked for me and even though I still have a few burning & stinging symptoms sometimes, on Duloxetine they are much better.
I was also given Amitriptlyine, but that didn’t do any good for me so I then was given a drug called Lefludomide and ‘touch wood’ that works.
What I am trying to say in a very roundabout way I am afraid, is that unfortunately in these illnesses it is trial & error with tablets, drugs etc and what suits one person doesn’t always suit another. Don’t give up, keep asking questions and chat with your GP but especially with your Rheumatologist. Also at your hospital they will have Rheumatology Specialist Nurses, ring and speak to them as they are usually very knowledgeable and helpful.
Hi Bakbre. Thank you for getting back to me. I didn't think to ask again if my hospital had replaced their specialist nurse - when I was first seen about my diagnosis early last year, their nurse had left their post and the department hadn't filled it. Being quite new to this condition, it's been trial and error just knowing who to approach for what. Glad to hear you're getting there with your treatment. When the department took my call, they took details and said they would pass them to the doctor but she was on annual leave. Hopefully she will get back to me but will call my GP. Take care.
Hi RMC17. I too suffered severely with small nerve pain in both feet, which was excruciating for many months until I was admitted to hospital for a long time. The best person to advise and treat you is your rheumatologist as they can arrange referral to pain specialist and other departments. Plus they know these problems more than your Gp, as usually the Gp relies on the specialists to advise them on treatments for unusual and distressing conditions when the normal treatments they would prescribe don’t work. UCTD is complicated and needs a rheumatologist to oversee symptoms. I started duloxetine twice daily about 3 and a half years ago while in hospital. I don’t take gabapentin any more as my pain is much better and don’t really respond to it. But I also take hydroxychloroquine and I’m on an immunosuppressant called Mecophenolate Mofetil twice a day. I take a vitamin B complex tablet daily (bought over the counter) to help the nerves . However I would advise that you contact the rheumatologist through her secretary urgently to get an appointment if you are in such pain. Leave a message on an ansaphone if necessary and they’ll get back to you. Hopefully you can see the Gp in the meantime but you can still contact the Gp and hopefully he’ll send them an email too, asking them to see you urgently. Good luck. 🥰
Hi Sunphoenix. Thank you so much for your message. Trying to navigate through this condition can be a minefield but advice from you and others on this forum is invaluable and much appreciated. Best wishes.
I get flesh burn feeling particularly at night, but now during the day as well.
Affects legs (mainly calves and things), upper arms, abdomen - all over and maybe near kidneys.
I always thought it was an immune thing directly affecting my actual flesh.
Thanks for alerting me - You have prompted me ask why it has taken two years for me to know this, given how many doctors I've told.
It seems they just let me go on and don't always give explanations and actually that ends up making things more difficult than it could have been ...so sad really, I'm getting increasingly frustrated by it all.
I first mentioned stinging and prickling sensations in my lower legs and feet to my GP in April/May last year. She sent me for B12 and folate blood tests that came back normal. She suggested I get in touch with the Rheumatology department. Then I developed burning sensations particularly in thighs and backside but can occur anywhere, e.g. back, neck, head... After a couple of e-mails to rheumatology, I was written to that it appears to be a small nerves issue and an Amitriptyline prescription was sent to my GP. Unfortunately, this didn't help and I'm now experiencing pulsating vibrating sensations from my left foot up my calf. I do get other symptoms like red fingers but it's the constant burning that's getting me down so sad to report, it's not getting better over time. I do get relief from it though if I stand up but that's not possible 24/7 and working a desk job! Just hoping that I soon get some feedback from my last appointment and can get some answers as to what the issue is Hoping that you can get some answers too. Best wishes.
I have taken Alpha Lipoic Acid for prickly stings neuropathy. It flares and remits but when it’s bad, it is wide spread prickly feeling throughout my body even in my mouth and throat. Its maddening. When its very bad I see flashes of light in my imagination which my neurologist says is neuropathy in my brain stem like migraine auras. My neurologist suggested ALA 1200mg daily. I also take hydroxychloroquine 400mg daily. Both help me. When I’m in a flare I also take prednisone usually a low dose 5mg helps me to sleep. ( I should take a prednisone pulse but I hate that drug) . Also I go to acupuncture which calms the neuropathy down immediately. It will flare back up but usually not as bad. It helps if I go 2-3x a week during a flare. I also do gentle water exercise in a heated pool. good luck!
Good Morning poseymint. Thank you for taking the time to reply. This is really helpful and gives me information to bring up when I do get the chance to speak to GPand/or rheumatologist as I think giving ALA a chance is worth a shot. Haven't come across acupuncture for neuropathy but will do some research. Take care.
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