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Old 08-07-2016, 01:28 AM #21
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Sorry to be late in reply. I'm so glad you finally have answers...and to be honest, I'm not surprised at the answers you received. Being that I have primary Sjogren's and ganglionopathy, I could see some of your history matching mine. I too am sero-negative for Sjogren's, but very positive via lip biopsy. Actually, my lip biopsy report says that there was so much loss of acinar structures and the degree of fibrosis was significant, that they considered it consistent with Sjogren's at end stage.

I hope they still follow up with checking for Scerloderma based on your ANA nucleolar pattern. As I told you before, it is possible to have overlap of autoimmune disease processes...and the member from Sjogren's World had both along with profound neuropathy.

There are actually many people with Sjogren's that don't have overly dry mouth. My mouth isn't that dry any more. I have times when it is more dry, and times when it isn't that bad. You should see a dentist though, as dental problems are common with Sjogren's and even slight bacterial changes in the mouth (from less saliva) can cause gum disease, cavities, etc.

Your new GI symptoms (constipation, etc) may be explained by some autonomic neuropathy...also very common with Sjogren's and ganglionopathy/neuronopathy.

I know you have tried various DMARDS, like Plaquenil without success and having many side-effects. I hope they consider IVIG for your symptoms and neuropathy...you would definitely be a good candidate. I have found IVIG to help Sjogren's symptoms and some of my neuropathy symptoms. However my neuropathy and Sjogren's was confirmed too late and therefore there was too much permanent damage for significant improvement with biologics and IVIG. But I do have less pain and I think it's has helped with slowing further progression. My autonomic symptoms also seem to be better managed, which I attribute to IVIG. With your new Sjogren's Dx and history of confirmed SFN, you should not have a problem being approved for IVIG...even in your location.

Please keep us posted.
The treatments already tried - actually Plaquenil and methotrexate were brilliantly effective for me but severe allergic reactions made them impossible. I'm really hoping you are right about IViG being on the menu. I recall waiting for my lumbar puncture in the day care room of neuro ward for about six hours wedged between a couple of people having their IViG. Their symptoms were far less problematic than mine to begin with. But when I asked the neuro if this would be available for me to try too he looked startled and said no - not for RA with "mild SFN". This was a year ago.

I think it's probably too late for me now as the painful burning has gone and all is largely numbness and tingle with crawling and turning to stone sensation. But I'd still like to try it to help with the autonomic features. I will certainly ask the new rheumy. Would it have a better track record for Sjogren's neuropathy than Rituximab though?

The main drug friends with lupus and vasculitis recommend to me is Mycophenolate Mofetyl. It is a DMARD and supposedly helpful in preventing renal involvement - which I'm rather worried about given I have microscopic haematuria and a very large renal cyst and hypertension. I will let you know what is decided.
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Old 08-07-2016, 02:32 AM #22
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"Would it have a better track record for Sjogren's neuropathy than Rituximab though?"

Mat, obviously discuss this with your clinical team but as far as I can see Rituximab does not seem to be very effective Treatment of primary Sjogren syndrome with rituximab: a randomized trial. - PubMed - NCBI. There is a commentary on this clinical trial here Does Rituximab Help Patients With Primary Sjogren Syndrome? | Annals of Internal Medicine.
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Old 08-07-2016, 03:24 AM #23
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"Would it have a better track record for Sjogren's neuropathy than Rituximab though?"

Mat, obviously discuss this with your clinical team but as far as I can see Rituximab does not seem to be very effective Treatment of primary Sjogren syndrome with rituximab: a randomized trial. - PubMed - NCBI. There is a commentary on this clinical trial here Does Rituximab Help Patients With Primary Sjogren Syndrome? | Annals of Internal Medicine.
Thanks for this Kiwi - very useful to have these links prior to rheumy appointment. A UK friend on another forum was recently diagnosed with P Sjogren's and put straight onto Rituximab with Hydroxichloraquine. She isn't feeling the benefit yet and has a glandular plus RA rather than neuropathic presentation. But she's only had one infusion so far and I assumed that it is now part of the treatment protocol for primary Sjogren's in the UK. I think I'm more interested in IViG for myself.
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Old 08-07-2016, 08:27 AM #24
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Mat, thanks for the reply. We definitely have many, many similarities with the presentation of our symptoms, other than mine being a seropositive RA diagnosis. My grandma HAD rheumatoid arthritis (that's how she words it) more like it went into remission and she hasn't had issues in years, but she did have the active disease for many years. Genetics definitely playing a role, but I do wonder what "flipped" on the gene - environmental factors? Smoking for several years on and off? Wish I could undo those bad decisions now. Do you have any family history of autoimmune diseases?

Shockingly, the one thing I haven't done is given up gluten. I am on a ketogenic diet, I've been on it for 2 months. It's helped with the burning in my feet, however, my hands started bothering me a few weeks after starting keto and now I have tingling in my fingertips, altered sensation in the fingertips, burning in my hands, and burning in my mouth, lips, nose, and earlobes. My fingers get FREEZING cold and then when they warm up, they burn and turn bright red and that's when my fingertips tingle. I'm assuming a little Raynaud's is happening. ALL of this started with extremely cold feet (painfully cold) before the numbness kicked it. Side note, I don't eat much gluten on my keto diet, I was actually trying to avoid it, but found out it was in my salad dressing I was eating all the time.

I cheated once on keto and had pizza with friends. My entire mouth was vibrating and tingling after. Big mistake! Do you follow any certain type of diet? I've been reading these books about the immune system and how to help "recover it" with diet, supplementation, etc. It sounds a little too good to be true and I haven't read one thing about neuropathy in there unless it's presented with MS (where it seemingly comes and goes) OR a celiacs diagnosis, which I don't have. I might give the AIP diet a try, but I'd have to leave keto behind because I don't know how I could do both.

I have absolutely the worst anxiety and depression, especially lately. My anxiety was extremely bad in the two years before this all started due to a relationship ending, losing a job, etc. Do you have any issues with anxiety or depression? Do you believe those emotional issues compound any symptoms in a psychosomatic way?

Also, the link you provided me with didn't work. It went to a login page. But I'd be interested in reading it!

Have a nice rest of your weekend and thank you for allowing me to chat!
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Old 08-07-2016, 10:55 AM #25
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Mat, thanks for the reply. We definitely have many, many similarities with the presentation of our symptoms, other than mine being a seropositive RA diagnosis. My grandma HAD rheumatoid arthritis (that's how she words it) more like it went into remission and she hasn't had issues in years, but she did have the active disease for many years. Genetics definitely playing a role, but I do wonder what "flipped" on the gene - environmental factors? Smoking for several years on and off? Wish I could undo those bad decisions now. Do you have any family history of autoimmune diseases?

Shockingly, the one thing I haven't done is given up gluten. I am on a ketogenic diet, I've been on it for 2 months. It's helped with the burning in my feet, however, my hands started bothering me a few weeks after starting keto and now I have tingling in my fingertips, altered sensation in the fingertips, burning in my hands, and burning in my mouth, lips, nose, and earlobes. My fingers get FREEZING cold and then when they warm up, they burn and turn bright red and that's when my fingertips tingle. I'm assuming a little Raynaud's is happening. ALL of this started with extremely cold feet (painfully cold) before the numbness kicked it. Side note, I don't eat much gluten on my keto diet, I was actually trying to avoid it, but found out it was in my salad dressing I was eating all the time.

I cheated once on keto and had pizza with friends. My entire mouth was vibrating and tingling after. Big mistake! Do you follow any certain type of diet? I've been reading these books about the immune system and how to help "recover it" with diet, supplementation, etc. It sounds a little too good to be true and I haven't read one thing about neuropathy in there unless it's presented with MS (where it seemingly comes and goes) OR a celiacs diagnosis, which I don't have. I might give the AIP diet a try, but I'd have to leave keto behind because I don't know how I could do both.

I have absolutely the worst anxiety and depression, especially lately. My anxiety was extremely bad in the two years before this all started due to a relationship ending, losing a job, etc. Do you have any issues with anxiety or depression? Do you believe those emotional issues compound any symptoms in a psychosomatic way?

Also, the link you provided me with didn't work. It went to a login page. But I'd be interested in reading it!

Have a nice rest of your weekend and thank you for allowing me to chat!
Lots of questions to answer and a poorly dog to care for just now as it's tea time here in Scotland!

Firstly to answer the anxiety and possible psychosomatic element to our neuro symptoms question, no I don't believe either of us could dream up such symptoms - only very few people would be fanciful enough. I'm firmly of the opinion that my own symptoms are important clues and I have had counselling and worked out most the origins of my autoimmunity. As a few regulars here know, last year I was in hospital quite a lot (four weeks in total).

Each time I was admitted I knew exactly what was causing my symptoms where doctors hadn't a clue and misdiagnosed drug induced pancreatitis as sepsis, and a post op sepsis on anxiety. They were pretty abject when they found my CRP up at 160 each time!

My symptoms guide my research and I now trust my instincts over medical opinion most of the time. Experience has given me confidence to be proactive and persist searching until I get proper answers.

I don't suffer from depression, although I was diagnosed and treated for this at one stage a few years ago so some doctors coming new to me as a patient, will see a short, overweight, middle aged woman and jump to conclusions. When they have done this, and backed up their assumptions with this depression diagnosis, I mince them!! Now they see the formal letter of complaint I copied onto my notes and realise I'm not for messing with! My old GPs on the island where I lived (and still return to for long periods) learned the hard way not to blame anything on anxiety with me!

So please don't let yourself become anxious that your symptoms are a figment of anxiety and aren't real. Equally don't panic that they are something terrible. You are articulate and clearly sensible so you need to trust yourself to know when things aren't right. I've not met you of course but I wonder if your RA and perhaps OA are probably not well controlled and this is causing your neuro symptoms. This is what I assumed was happening to me when my neuropathy progressed but now I know that my RA was secondary to this primary Sjogrens. Perhaps it is the other way round with you? And as Kiwi has pointed out, Musculoskelital diseases can have an autoimmune element - it really is not black and white in rheumatology at all - we are talking about a huge spectrum.

I dont know the significance but I have read that the spondyloarthritis family of diseases are considered to be immune mediated now, rather than autoimmune. A form of spondy, Psoriatic Arthritis most certainly causes peripheral neuropathy as one of the main symptoms - and can overlap with RA. Is this a possibility for you I wonder? PsA can affect some people without the psoriasis being present. My cousin has this type but her family on the other side are the ones with the history of psoriasis.

I don't know about my own family history of autoimmunity I'm afraid. My mum had many things wrong with her but rarely bothered to see a doctor and died suddenly at 73 from sudden cardiac arrest caused by severe atherosclerosis, despite being thin and physically active. My dad also died of cardiac arrest while swimming in the sea. He had heart problems, hypertension, diabetes and gout. I think his diabetes was a rare, late onset autoimmune type but unfortunately I never got to ask him more. My grandparents all died quite young from a car accident, septicaemia and this rare diabetes respectively.

My sisters were both born profoundly deaf and one has burning mouth syndrome which I suspect might be Sjogrens. She has awful back problems too. But her bloods were clear (apart from raised ESR) and she didn't want the lip biopsy she was offered a few years ago. I will write and tell her my Sjogrens news. We have a second cousin with primary Sjogrens who ignores it as best she can but she's getting on and the arthritis side of things was much worse when I last saw her a few years ago.

I have found that researching and understanding why I feel things physically and emotionally is the best way to stay relatively up beat. For instance, my depressive phase was out of character and so I got myself tested for vitamin D levels and found I was deficient. So I now take AdCal D3 and have never looked back. If I'm anxious it's because my symptoms make me anxious - not the other way around.

I'm lucky to have a terrier soul in me and won't allow people to obstruct my quest for knowledge. No one has used the word psychosomatic or functional or dismissed me and not lived to regret it - I'm an artist but I've inherited a good legalalistic mind and don't suffer from brain fog. Foods don't influence my symptoms at all apart from bread and sugar which make the weight pile on.

Very windy here in Scotland today. Going for a late afternoon nap now! Take care.
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Old 08-07-2016, 02:04 PM #26
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I get what you are saying about the scleroderma and only having very minor signs on the toes and one elbow. But this is why it is very important to be thoroughly checked NOW. If it is in very early stages, then this is when it needs to be caught and treated for best outcome. Those who don't get Dx'd until all the fingers and toes are effected are well into the course and outcomes aren't always as good since it wasn't caught in early stages.

Whenever you have confirmation of an AI disease, then it is crucial to double check symptoms that may related to other AI disease, as 'overlap' is common and changes the treatment factors. I have overlap to include Sjogren's with ganglionopathy/neuronopathy, APS, and now Psoriatic Arthritis...ALL autoimmune based. And you are correct...spondyloarthopathies ARE immune based. I just saw my neuro/rheumy at Hopkins this past week and we discussed the confirmation of my new inflammatory arthritis (PsA) in this class. Once you have an AI disease, it is very common to add others on.

I don't have any experience with Rituximab, but several on the Sjogren's board have tried it, some with success in reducing symptoms. IVIG is far better (and documented) for neuropathy from Sjogren's...but needs to be caught early, as in any condition, for best results.

I would agree with you (just in reading your posts) that you have NO psychosomatic elements to your symptoms!!

As for the constipation...autonomic neuropathy is NOT the only factor here. Just because you don't have severe dry mouth, doesn't mean you don't have 'dryness' elsewhere. Moisture producing glands are throughout the body and Sjogren's effects EVERYTHING with moisture (which is pretty much everywhere). Joint fluid, skin, GI track (entire), eyes, mouth, vaginal, vascular, etc, etc, etc...the list goes on. So your constipation is likely a combination from autonomic neuropathy and Sjogren's...which causes changes in stool due to lack of moisture. Miralax (not sure if you have this in Scotland) works by pulling moisture from the colon to aid in constipation.

You will likely need to add a few specialist to your medical team as Sjogren's effects so many things that are beyond PCP care.

Needless to say, a cardio might be wise as well, to evaluate the palpitations. Autonomic neuropathy effects cardiac function as well...in many ways.
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Old 08-07-2016, 03:08 PM #27
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I get what you are saying about the scleroderma and only having very minor signs on the toes and one elbow. But this is why it is very important to be thoroughly checked NOW. If it is in very early stages, then this is when it needs to be caught and treated for best outcome. Those who don't get Dx'd until all the fingers and toes are effected are well into the course and outcomes aren't always as good since it wasn't caught in early stages.

Whenever you have confirmation of an AI disease, then it is crucial to double check symptoms that may related to other AI disease, as 'overlap' is common and changes the treatment factors. I have overlap to include Sjogren's with ganglionopathy/neuronopathy, APS, and now Psoriatic Arthritis...ALL autoimmune based. And you are correct...spondyloarthopathies ARE immune based. I just saw my neuro/rheumy at Hopkins this past week and we discussed the confirmation of my new inflammatory arthritis (PsA) in this class. Once you have an AI disease, it is very common to add others on.

I don't have any experience with Rituximab, but several on the Sjogren's board have tried it, some with success in reducing symptoms. IVIG is far better (and documented) for neuropathy from Sjogren's...but needs to be caught early, as in any condition, for best results.

I would agree with you (just in reading your posts) that you have NO psychosomatic elements to your symptoms!!

As for the constipation...autonomic neuropathy is NOT the only factor here. Just because you don't have severe dry mouth, doesn't mean you don't have 'dryness' elsewhere. Moisture producing glands are throughout the body and Sjogren's effects EVERYTHING with moisture (which is pretty much everywhere). Joint fluid, skin, GI track (entire), eyes, mouth, vaginal, vascular, etc, etc, etc...the list goes on. So your constipation is likely a combination from autonomic neuropathy and Sjogren's...which causes changes in stool due to lack of moisture. Miralax (not sure if you have this in Scotland) works by pulling moisture from the colon to aid in constipation.

You will likely need to add a few specialist to your medical team as Sjogren's effects so many things that are beyond PCP care.

Needless to say, a cardio might be wise as well, to evaluate the palpitations. Autonomic neuropathy effects cardiac function as well...in many ways.
Thanks once again Enbloc. It's great to have you here helping me get my head round it all. Sorry that it's bit one way. I hope that you have someone equally wise advising and explaining things to you in the way that you always do with me here and on the SJS World forum.

You have a very good point about the dryness. My husband hasn't looked up SJS yet (maybe never will!) but when I gave him a brief verbal synopsis he commented, "well I've known you since we were 19 and you've always had so much dryness everwhere - I'm amazed you don't have visible cracks!". I had total alopecia twice as a kid and once post gestationally, and was always caked in eczema and had severe blepharitis and frequent conjunctivitis (not painting a very glam image of my younger self am I?).

And my sicca has been flaring for a month now - then will come nose bleeds from dry sores at the top of my nasal passage. It's a cycle that I'm getting familiar with. And itchy scalp always although no dandruff. Ugh!

But the rheumy registrar explained that scleroderma was unlikely if my main rheumatic disease began five years ago, because by now I'd apparently have Calsinosis and digital ulcers. I don't think I would necessarily because this started to show up as RA and I've been on aggressive DMARD therapy for a few years although off these for a year now. But these drugs would have slowed Scleroderma or Sjogren's or both down significantly anyway.

But still a lack of skin involvement makes it less likely for the time being. Anyway it can be ruled in or out by a nailfold capillary test though and my hospital is the second best in the UK for Scleroderma - second only to the Royal Free in London. So I should know soon enough but I've photographed my nails and looked close at the folds and can see no sign. But it does need a microscope and some drops of oil to know for sure of course. I hope I'll be monitored well now but I do have to return to my old island home for six months over the winter. I plan to come down once a month as our house is being made habitable by builders and I can attend the doctor and hospital appointments while I'm here. It does complicate things a bit but can't be helped.

Have you come across anyone on DMARDs and IViG I wonder? Is Myco used for connective tissue diseases in the States? And if so have you heard of people with SJS who are successfully treated with Mycophenolate Mofetil? If these could be combined then that might lead to a good outcome for me possibly. Oh well I will just have to be patient. Not the easiest thimg for me at this stage I admit!
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Old 08-07-2016, 05:38 PM #28
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Hi Mat, I'm glad that you finally got a positive test results and hope it would lead to an effective treatment!

Regarding Rituximab and getting immunological treatments too late, well, my problems started two decades ago and it seemed as seronegative Sjogren, I've got POTS and other autonomic problems, the skin biopsy for SFN showed severe damage, my symptoms are mainly reduced sensation and numbness.
And I was also allergic to Plaquenil and Imuran.
After the SFN diagnosis my neuro recommended on IVIG but the HMO refused to fund it and approved Rituximab. I got the first infusions on Nov, and repeated it recently.
Although my POTS and SFN started years ago the Rituximab helped! The effect on the POTS was significant, my standing HR dropped from ~110-140 to ~70-90! My brain fog disappeared, and I had a lot more energy.
It is harder for me to estimate the effect on the SFN (I had a traumatic skin biopsy and refuse to repeat it), but it seems there have been less burning, tingling, numbness, my feet got warmer so the blood circulation probably improved, and I feel the perception of temperature in my hands improved.
It took about 2 months till the improvement started and it lasted about 2-3 months.
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Old 08-07-2016, 08:24 PM #29
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Thanks once again Enbloc. It's great to have you here helping me get my head round it all. Sorry that it's bit one way. I hope that you have someone equally wise advising and explaining things to you in the way that you always do with me here and on the SJS World forum.

You have a very good point about the dryness. My husband hasn't looked up SJS yet (maybe never will!) but when I gave him a brief verbal synopsis he commented, "well I've known you since we were 19 and you've always had so much dryness everwhere - I'm amazed you don't have visible cracks!". I had total alopecia twice as a kid and once post gestationally, and was always caked in eczema and had severe blepharitis and frequent conjunctivitis (not painting a very glam image of my younger self am I?).

And my sicca has been flaring for a month now - then will come nose bleeds from dry sores at the top of my nasal passage. It's a cycle that I'm getting familiar with. And itchy scalp always although no dandruff. Ugh!

But the rheumy registrar explained that scleroderma was unlikely if my main rheumatic disease began five years ago, because by now I'd apparently have Calsinosis and digital ulcers. I don't think I would necessarily because this started to show up as RA and I've been on aggressive DMARD therapy for a few years although off these for a year now. But these drugs would have slowed Scleroderma or Sjogren's or both down significantly anyway.

But still a lack of skin involvement makes it less likely for the time being. Anyway it can be ruled in or out by a nailfold capillary test though and my hospital is the second best in the UK for Scleroderma - second only to the Royal Free in London. So I should know soon enough but I've photographed my nails and looked close at the folds and can see no sign. But it does need a microscope and some drops of oil to know for sure of course. I hope I'll be monitored well now but I do have to return to my old island home for six months over the winter. I plan to come down once a month as our house is being made habitable by builders and I can attend the doctor and hospital appointments while I'm here. It does complicate things a bit but can't be helped.

Have you come across anyone on DMARDs and IViG I wonder? Is Myco used for connective tissue diseases in the States? And if so have you heard of people with SJS who are successfully treated with Mycophenolate Mofetil? If these could be combined then that might lead to a good outcome for me possibly. Oh well I will just have to be patient. Not the easiest thimg for me at this stage I admit!
I take both Plaquenil and IVIG...and have for a number of years. Don't put too much stock in DMARDS. They are really just a baseline treatment and not all that effective when it comes to Sjogren's. It's reported to help with fatigue and joint pain, but I still have a ton of both symptoms. I have never seen an actual study of how effective it really is for slowing progression. Would it have been worse had I not taken it...possibly. But it's certainly not a miracle drug by any means. Of course, I have other AI disease process complicating the issues. Doctors still use DMARDS, but biologics have taken over for treatments of acute disease process.

Speaking of that. Overlap does NOT just happen from the start of an AI process. You could just now be developing Scleroderma secondary to the Sjogren's...that is the point I was making about catching it in early stages. I only developed PsA withing the last 2 years, yet I have had Sjogren's for 20 years +. So I agree with your rheumy about what stage you would be if you had scleroderma 5 years ago...but I'm talking about you possibly developing it NOW as an overlap from the Sjogren's (which you've obviously had for a while). I think you will get a good 'looking over' now that you have this new Dx. just don't let something like your toes and elbow go without at least being checked for sclero since you now have the confirmed Sjs Dx...especially with that ANA pattern. That is not the common pattern for SjS...it IS the common pattern for Scleroderma.

I dismissed my dryness as I never knew any different. So my mouth may be drier than other people, but to me it's not that bad (as I have times when it's worse). I have always had dry skin, constipation, GI problems, etc....so I probably this long before my major onset of neuro issues in 1996.

I also took Cellcept (Myco) for a while, but got a life-threatening infection while using it and had to have emergency surgery and stop the Cellcept. I can report that I found Cellcept way more helpful than just Plaquenil during the time I used it...noticeable reduction in symptoms. But my doctor was hesitant to restart it after that horrific infection that almost killed me (and took 4 months to get over). But keep in mind that I am also immune deficient...so that complicates the problem for me with using biologics that suppress the immune system. You would likely have a much better result than I did, being that you are not immune deficient.

I hope I can help you. I didn't have anyone to provide me info along the way. I picked it up in bits/pieces from my doctors, etc before 'forums' were in wide use (20 years ago). Don't hesitate to ask me anything. I think you'll find that so much in your life now makes much more sense with this Dx (I did)...everything sort of fell into place once I started to really understand the impact of Sjogren's on every system in your body.
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Originally Posted by stillHoping View Post
Hi Mat, I'm glad that you finally got a positive test results and hope it would lead to an effective treatment!

Regarding Rituximab and getting immunological treatments too late, well, my problems started two decades ago and it seemed as seronegative Sjogren, I've got POTS and other autonomic problems, the skin biopsy for SFN showed severe damage, my symptoms are mainly reduced sensation and numbness.
And I was also allergic to Plaquenil and Imuran.
After the SFN diagnosis my neuro recommended on IVIG but the HMO refused to fund it and approved Rituximab. I got the first infusions on Nov, and repeated it recently.
Although my POTS and SFN started years ago the Rituximab helped! The effect on the POTS was significant, my standing HR dropped from ~110-140 to ~70-90! My brain fog disappeared, and I had a lot more energy.
It is harder for me to estimate the effect on the SFN (I had a traumatic skin biopsy and refuse to repeat it), but it seems there have been less burning, tingling, numbness, my feet got warmer so the blood circulation probably improved, and I feel the perception of temperature in my hands improved.
It took about 2 months till the improvement started and it lasted about 2-3 months.
Thanks so much for telling me your story StillHoping. Can I ask whereabouts you live as not sure what HMO represents - the English equivalent of NICE perhaps? I'm so glad to learn that Rituximab is working well for you. Here in Scotland the guidelines are set by the Scottish Medicines Consortium and SIGN. I had skin biopsies taken from each of my calves last year and they showed nothing.

However it was my island GP who took them and I'm not sure how valid they were although he did his best, but who knows how reliable the transportation was or how long they hung around for before being transported to the pathology lab. And he had never done this before so I'm not sure he took them from the right place on each calf or not. It was about 15 months ago and I was battling with pneumonia at the time - as one does!

The pain has largely gone out of mine although I have the odd flare - mainly in my hands and wrists at night. Mostly I just feel tingly and rather numb - especially my feet and the left side of my face and mouth. But I am getting fasciculations a lot just now in random places - used to be a couple of my toes - yesterday my right elbow (both the areas where I have hard dry skin) then last night right down my right thigh as I got into bed I felt as if the bed was vibrating violently! So things are changing it seems and I'm not sure if this is because the Sjogren's has been left untreated for over a year now and is out of control - but this is what I suspect.

I will let you know how I get on with the rheumy on 24th.
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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