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
pam_87693 robin95721
Posted
Oh dear I see this over and over again. I too have no markers, never have never will. I have Lupus and Sjögren's. Both Confirmed I have an ANA of 320 which is homogenous that is Lupus. If it's homogenous speckled it's still Lupus and Sjögren's. If it's speckled only its Sjögren's! I can begin to understand why we are told we have then we don't over and over again. I even had the lip biopsy that was negative too. As if that isn't enough I have a rare condition called Ehlers-Danlos which is a collagen abnormality I was born with but that came from my father, the Sjögren's and Lupus came from my mother!
robin95721 pam_87693
Posted
Do you think botox could have caused or triggered it? Nobody in family has an autoimmune disorder. Mine wasn't speckled. I had one test that was just negative for ANA and then another that came back at 1:320 positive homogenous. The doctors think the nerve pain is from a compression injury in my neck (had CT scans) and that plenty of people walk around with high ANA and that nothing happens and that this could be a side effect Lyrica. But I do have nerve pain all over which is confusing but doesn't rule out lower back issues. When I go to PT I get relief from back manipulation. But now I'm so confused. I am so scared. All the Sjogren's tests were negative. I feel like I'm losing my mind. Only one doc thinks it may or may not be lupus. What do you do for treatment?
Tumtum1963 robin95721
Posted
Tumtum1963 robin95721
Posted
I've tried to reply to this on my iPhone 10 times but ads keep hijacking my responses!
Yes ive had a small fibre neuropathy affecting my entire peripheries over a five year period. I was diagnosed with seroneg RA in 2011 - assumed it was related. Then was taken off DMARDs one by one to see if they were the cause. It appears and for 18 months it has affected my mouth and face too.
Meanwhile my RA symptoms have taken a hike while the neuropathy rages along with awful salty/ foul taste, GORD, dizziness and problems with dryness down below and difficulty swallowing,regulating temperature, refers, flu-like malaise and fatigue.
I now have a new rheumatology team who think I may have primary Sjogrens because of positive ANA 1.320 (neg ENA), raised IgG and IgA, high PV/ ESR and CRP. I don't have severe Sicca or mouth dryness, teeth in good shape etc. But my new oral consultant explained that this no longer rules out Sjogren's - it can present in peripheral and central nervous system long before it causes the dryness in mouth and eyes.
Im to have a lip biopsy on Tuesday - which I'm not looking forward to having backed out of this last year. But something has to give, I've tried four main DMARDs and had severe allergic reactions but she explained there are still treatment options of the lip biopsy is positive. I am desperate for clarity so hoping the biopsy shows something that will help me progress as I can't bear the burning gums and lips and numbness in feet and legs - leads to proprioception issues so I lose my bearings and fall if I turn my head suddenly - so annoying!
Here red is a great link that shows how the Neuro Sjogrehs can manifest:
http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/
pam_87693 robin95721
Posted
Hi Robin with an ANA homogenous that is a clear factor for Lupus. Try not to feel frightened. I am certain that you have Lupus. I am not sure that compression would have caused this. The pain you are experiencing is typical Lupus neuropathy. Personally as I have Ehlers-Danlos I couldn't tolerate Lyrica it made me very dizzy to the point I was more like a jelly! I only say this because I do have Ehlers-Danlos syndrome. As you quite correctly say there are lots of people who have Lupus, many have full and productive jobs. We are all different and this IS the problem. Lupus can come from many paths that is why it is so diffucult for a consultant to understand. I can honestly say that from age 3 when I first walked I had mouth ulcers. A consultant after I said I was born with an umbilical hernia, a lazy eye and by 3 I had mouth ulcers. He replied Lupus! I'm 69 now, I have had a good life, rather too much progestogen for someone who is hyper mobile. I have 1 adopted son, 3 natural sons and they are all well. The youngest has Lupus but he hasn't been told his GP knows. He has Klinfelters so had Lupus from a zygote, he is well and has an excellent career. Try to think positively as Lupus is NOT the death sentence it once was. There is no cure at the moment but a consultant has numerous drugs to help you. I can't tell you about Botox because I haven't been offered it. I personally am not sure I would go for it, but I haven't had experience of this. Presumably this was given for a hypermobile neck? I think if I were you I would ask for a neck brace to wear while travelling. Have you been diagnosed by a geneticist for EDS?
Tumtum1963 pam_87693
Posted
I don't think a positive ANA is always associated with Lupus? I have the same ANA level as Robyn but have been told that Lupus would have caused organ involvement by now if I had it because I'm post menopausal and my symptoms go way back to childhood. There are many other things that can cause a high ANA reading. Mine was negative until recently but I had a positive Rheumatoid Factor for a while.
There are other immunological indicators for lupus such as immunoglobulin panel and high ESR/ PV/ CRP. If Robyn was diagnosed with Sjogrens already on strength of symptoms and blood tests then it is more likely to be primary Sjogrens than Lupus I would have thought?
robin95721 Tumtum1963
Posted
I have not been diagnosed with Sjogren's. I tested negative for it. All the other panels were negative. I have a high ANA and a negative dsdna (not a low negative but still on the inside). I freaked out bc I was crying the other night and about one tear came out so I thought Oh No here it comes. I have one rheumy who thinks I have something and another who doesn't (based on tests and sole nerve issue). Also I have an incredibly dry mouth. My friend was on Lyrica for cancer neuropathy and said it might be that, but I wanted to check. What do you have?
Tumtum1963 robin95721
Posted
I'm in similar place to you with my bloods but with a previous diagnosis of seronegative RA. I've had many powerful treatments for this but had severe allergic responses so not on anything for RA or Sjogrens now. I think the drugs and steroids I took for RA saw the joint pain off and also masked my immune markers to an extent. But the longer I go off everything the more my neuropathy flares. I have quite dry eyes made much worse on the nerve drugs I was put on. Now I just use occasional drops a few times a day. Same for mouth which was very dry on Cymbalta but otherwise isn't very dry at all.
The new rheum says Sjogrens doesn't always reach mouth and eyes but is the connective tissue disease most closely related to small fibre neuropathy. I'm having lip biopsy on Tuesday but if negative I think they will just wait and see probably - or maybe will do this anyway although my CRP and PV are both high as well as ANA. My ENA is negative like yours.
pam_87693 Tumtum1963
Posted
Tumtum I'm not sure what your trying to tell me I too have had all the same problems since a child. Nothing has changed except on the medication for Lupus I feel better I can eat without getting indigestion. I don't have terrible abdominal pain, I am slightly constipated still but don't get the trots. My skin is better, I'm not in pain, the dryness will carry on there is really nothing to help that unless you try pilocarpine.
Tumtum1963 pam_87693
Posted
Pam I wasn't trying to tell you anything. I was replying to Robin's question asking me what diagnosis I have so far.
I'm struggling with iPhone and this forum though as lots of spam flashes up all the time! So I send as quickly as possible making replies a bit brisk!
Tumtum1963
Posted
Ps pan I'm very glad you've had relief from the meds. You answered my question about ANA earlier on my other thread. But the childhood I was told by three rheum's that no such thing as seronegative Lupus and if I had lupus from childhood I would have organ involvement by now. This was the reason the connective tissue professor gave me for not having lupus. My ANA was negative then but I was on Methotrexate and Nifedipine at the time. He said he didn't care about autoantibodies but said lupus would definitely have shown up in my kidneys or lungs by now.
I'm not sure having a positive ANA now would have changed his view or the others. I have friends with diagnosed Lupus who are my age and have no kidney or lung damage. When I pointed this out to one rheum he said that was in London where they receive research funding for numbers of Lupus patients so diagnose rather liberally. Don't know about the rights or wrongs of criteria but I do know this is what I was told.
pam_87693 Tumtum1963
Posted
That's fine, it gets to you after a while. I know MTX knocks out all your markers. Azathropine is worse it's Jeyes fluid in a pill it can wipe out all your white cells! I'm sure your Prof wasn't probably aware of MTX then. I'm certain you have Lupus. With a homogenous ANA that's Lupus.
pam_87693 Tumtum1963
Posted
Well it hadn't damaged my kidneys I do have the cough, dry non productive with wheezing but apart from that I'm fine. I'm 69 now and at UCH last year was told we are amazed your alive.
sally83545 robin95721
Posted
Hi Robin,
Ok first stop and breathe. I know the physical symptoms are scary. I have Lupus,Sjogrens and Depression and my life is good. You must not panic, it is just wasted energy. I find it difficult to believe your meds for depression are the problem.
I had a doctor suggest it was my Prozac...went off the Prozac and just kept getting worse, so that should be your very last option. The treatment you can ask your Rheumy about is Plaquenil or Hydroxychloroquine same thing, it seems to be the go to drug for Lupus and Sjogrens. It takes awhile to work and makes you feel lousy at first but it made my nerve pain, tingles, burning etc. dissappear. It also helps with the dryness and fatigue. Do some research on it and see what you think. Best thing you can do is educate yourself on Lupus, it is different for everybody...fear is not an option. I had Botox I don't think it has anything to do with the Lupus, you can google it but I don't think so. I am sure you did not do this to yourself, it is just the hand you have been dealt just like the rest of us... It took me 8 years to get diagnosed. You already have a Rhuemy, so your ahead of the game. Explain to your family that this has been a tough summer, but you are working on getting answers and next summer will be better. Then move forward with dignity and courage. Educate yourself and advocate for yourself and do not allow yourself to be a victim. You can do this and your friends on this website will help you. Breathe Robin, you are not alone.
Sincerely Sally
robin95721 sally83545
Posted
The reason I was thinking of going off of my meds is that there can be medically induced Lupus which can resolve after removing the offending medications and one of the ones I am on is on the list. I tested negative for Sjogren's but now have the dry eyes, is that possibly a side effect of Lyrica? Rheumy told me not to get tested again too soon, I was tested almost three months ago, she said six. Psychiatrist thinks it's all my head and neuro says fribromyalgia. How will I know for sure if docs are divided?