Sjogrens? or Lyrica side effect
Posted , 4 users are following.
I developed neuropathy (small fiber) two and a half months ago. It started with tingling in my hands and feet and got worse from there. I had a high ANA and negative dsdna and negative for Sjogren's. I have had every medical test done except thorough thyroid. I had dry mouth on Neurontin and switched to Lyrica because Neurontin wasn't cutting it. The last few nights I woke up with very dry mouth and eyes and yesterday when the nerve pain was bad I tried to cry and one tear came out. I am so scared that since my Sjogren's test was negative that I really have Lupus and Sjogren's is just in the sidecar. I am BPII which doesn't help matters. I had recently come off HRT and had some Botox (another thread I'm on here ). Rheumy said it could be one of my bipolar meds, she doesn't think it's botox, but who knows? I am terrified that I did this to myself and/or what to do next. It scares me to come off my meds. There is nobody other than my doc to help with that and I can't afford to go to him twice a week. It is possible that my system will re regulate after the removal of the offending drug if it is drug induced, but it's a gamble. I would have to come off of them slowly because there can be physical side effects including neuropathy. I feel so trapped in my own body. This has been going on for three months and my poor family's summer has been ruined by my going crazy with this. I should have stopped hormones more gradually and never gotten botox. I am so so so scared. Is there anyone who can shed some light on this?
1 like, 22 replies
sally83545 robin95721
Posted
Robin,
I personally would stick with just one doctor. I would go back to the rhuemy and ask him for a plan. Should you wait a specified amount of time and see if symptoms worsen? Then have more blood work done? What is the plan for someone who is experiencing your kind of symptoms? Sounds like you have" too many cooks in the kitchen." Many medications cause dry eyes etc. dry eyes is only one of the symptoms of Sjogrens so don't get locked into the idea that is what you have. Are you fatigued? Have any rashes? Joint pain? Stomach issues? Autoimmune disease is different for every person and takes time to diagnose. I feel that your Rhuemy is the person to work with. Be patient and treat the symptoms, eye drops etc. Until you can decide on a plan of tretment with your doctor. I would NOT stop your meds because of a possibility of drug induced Lupus. You have to work closely with your doctor and follow a specific plan, otherwise you could end up in worse shape. Feel better,
Sally
robin95721 sally83545
Posted
I am not tired, nor do I have joint pain or stomach issues or rashes. The other possibility is that I have small fiber neuropathy from botox and juvaderm but that's for a nother forum...rheumy said wait to get tested again and watch for sypmtoms. I think the Lyrica might be responsible since this started after I went up on my dose. I understand your comments about psych meds.
Tumtum1963 robin95721
Posted
In that case there are lots of triggers for SFN - and if it was induced by Botox or whatever - it may just settle down. Mine hasn't abs has progressed over the years - and this is why I'm so sure it's part of my confirmed autoimmunity.
I would remain under rheumatology but keep an open mind, get your B12 checked and fasting blood glucose and any other possible causes.
Amitriptyline caused my eyes to become extremely dry but because I was diagnosed and treated for RA this was assumed to be causing the sicca. It only eased off once I stopped this medication. Same went for Cymbalta and dry mouth. I would keep researching to find the trigger because mine is now too established and I can't get shot of it at all - which is very depressing after five years. Don't accept idiopathic as an idea until you have to would be my advice. But equally don't panic as that just makes everything worse.
Tumtum1963
Posted
robin95721 Tumtum1963
Posted
some typos i don't understand 'abs' is that and? as in mine hasn't abs.and when you say keep researching to find the trigger and yours is too established and you can't get 'shot' of it, what do you mean. I don't know how not to accept idiopathic when everyone is telling me I have OCD (I am bipolar 2). I don't know how to find the trigger, it's driving me crazy bc so many docs think it's in my head and to just relax so which is it? How can I relax and see if it's somatic if it's imperative to diagnose?
Tumtum1963 robin95721
Posted
Sorry Robin. Further up this thread of yours I commented that I was struggling to say anything useful or coherent on this site because spam advertising kept flashing up and I would lose my words. So I had to type very fast and consequently lots of typos.
Note to self: come off these Patient forums soon because it's too stressful having to log in each time and cope with posting so fast and not being able to edit!
Yes abs should be and. I don't know how you can get a diagnosis - the majority of people with small fibre neuropathy are told that it's idiopathic and the only treatments offered are symptomatic ones such as anti-depressants and anti-convulsants. I have acknowledged autoimmunity and I am sure my SFN is part of this but so far cannot get any consultants to treat me for it. Even with a positive ANA and even if my lip biopsy tomorrow shows positive (which I doubt because I don't have dry mouth or very dry eyes) I probably won't be offered any treatment to slow down the progress of the SFN.
All I can suggest is that you get all blood tested for thyroid disease, B12 and low vitamin D and read up about which ones you can supplement without causing harm. B12 is the obvious one because you can't take too much and B12 deficiency isn't always properly recognised and causes SFN as one of the main symptoms. Some people find that cutting out gluten really helps. If you have tried all this already then all I can suggest is that you keep researching but try to focus on the idea that nerves do eventually repair for most people. Either that or, like me, you will just eventually learn to live with it as you have presumably had to do with your bipolar disorder?
I've had several doctors imply mine is due to health anxiety. However I have always been quite certain that it isn't so have stood my ground and luckily my blood and spinal fluid has supported my conviction so far. Please stand your ground and try not to panic - I know it's hard!
robin95721 Tumtum1963
Posted
My rheumyy just called and said he thinks it's Sjogren's but to go to the Opthomologist right away and get an eye test and that if it was positive he would put me on plaquenil but he thinks the SFN has no connection?