Hi NT friends. I had my neuro appointment on Wednesday. She started with a disclaimer re the last consultation six months ago and how she hadn't had much info on me at all then. She said now that I have a solid diagnosis of Sjogrens made by a rheumatologist in the same hospital, she can work with me much more easily. She explained that she had a letter from my rheumatologist asking her to decide a) if my neuro symptoms are Sjogrens related and b) if they are significant enough to warrant a big gun drug such as Rituximab or an immunosuppressant.

She did various tests on me again - getting me to walk toe to toe and lift my arms up straight ahead and did reflex tests on my arms and legs. I was absolutely hopeless at the toe to toe walk, struggled to hold arms up in front of me as both shook and left arm is rather weak. I told her about the pins and needles in face and arms and horrible night pain in 4th and 5th knuckles of both hands with locking every night. She feels that Sjogrens causes these symptoms in 20-50% of patients so is happy to call it a clinical SFN me and does not want to do further skin biopsies in order to prove I have small fibre neuropathy. She thinks the limb weakness is probably ganglionopathy. She wasn't of the opinion that inmunesuppressants would not reverse or prevent the neuropathy from progressing.

I tried my utmost to convey my concerns about the numbness and disequilibrium worsening and this time she didn't belittle these symptoms at all - but she pointed out that I'm highly drug allergic so we need to weigh up the risks with the benefits of big gun drugs like Rituximab against their possible effectiveness with this kind of neuropathy. She says that there is no real evidence that drugs such as immunesuppressants prevent peripheral nerve damage. I pointed out that my neuropathic pain was greatly helped by methotrexate and steroids and she shrugged and said that if I choose to go down this route she wouldn't stand in my way and will certainly be talking to my rheumatologist now about what she had observed.

It's not that she's saying my symptoms are mild, although she thinks the ganglionpathy is. But she feels the numbness is a negative symptom i.e. damage has already occurred and won't therefore be helped by drugs now. I explained that I just really don't want it to keep progressing further but she said that the drugs used for RA won't stop it progressing. She was at least taking me seriously this time. However she admitted that she takes a very conservative approach to drugs because those suggested by my rheumy scare her and she doesn't want to encourage me to take such potentially harmful drugs on a false premise. She suggested Pregabalin/Lyrica as the remaining symptom masker she would like me to try, but I said I'd rather not risk side effects of dizziness and mood swings when my worst symptoms are tingle, numbness, weakness in limbs and disequillbrium. After last year with Cymbalta I'm not prepared to take anything more that isn't tackling the disease at source I explained.

So she said she wants more nerve conduction tests done now - which she will organise - prior to advising/writing to the rheumy about me. This is in case it's now affecting my large nerve fibres too. If it is this then she will revise her position on immunesuppressant therapies she explained.

She also said my symptoms have changed in quite a short period of time so it would be very hard to monitor me for any improvements if on Cellcept or Rituximab. I was baffled by this and told her that my symptoms haven't changed - they have progressed! She disagreed - which worried me - and said that the limb weakness and my loss of balance are new. But they really aren't - it is just that I'm still acquiring the vocabulary to describe them accurately.

IViG wasn't mentioned although she asked for my sheet of symptoms and questions when I took this out of my bag - and I did ask about IViG as a possible treatment as my last typed question. I regret not asking her in person now but she was running 30 minutes late and I didn't feel it would have got me any further. So I'm not sure whether this was a successful appointment or not. Awful to hope it's affecting my large nerve fibres now - but this seems to represent my best chance of getting back onto a modifying treatment?

I found the details of your appointment very interesting. Thank you for sharing. My neurologist is also "scared" of some of the drugs because of the lack of evidence of efficacy. So I am on Gabapentin masking the symptoms. I am including a link to an article I read recently about Pregabalin regenerating nerves in mice with spinal injuries. Honestly, I don't understand a lot of it. Keeping fingers crossed that something will be found to help us. Best of luck! Researchers activate repair program for nerve fibers: Releasing molecular brake allowed damaged neurons to regenerate - Medical News Today

Hi Mat

Thanks for the update. Understand the complicated process you are going through . . . and the frustration with making yourself understood.

Like you I'm allergic to several medications - Paradex, Amitryptiline, Voltaren (Diclofenac) and many others interfere with the efficacy of the corticosteroids I take for Addison's (adrenal insufficiency), and can't be taken. I have chronic pain from osteoarthritis and peripheral neuropathy and now it looks like bulging discs in my lumbar spine may be responsible for some of the painful nerve issues (MRI yesterday). The neurologist & rheumatologist want me to try Gabapentin (Neurontin) for the neuropathy. I'm hesitant given my previous reactions, the numerous documented side effects, and the fact that anti-convulsants are known cortisol suppressants ie: I would have to increase the steroids. Also with a family prevalence of epilepsy (but not me - so far) I'm concerned that starting something like Gabapentin may induce epilepsy, if I had to go off it for some reason. When I discuss the concerns (that is if I'm given the time) the doctors just state their patients seem to tolerate it well. I've done further research on Gabapentin and from what I've read it doesn't seem to be effective for inflammatory pain (eg arthritis - nor is it usually prescribed for this). Sorry to have diverted this post onto a discussion on Gabapentin - but the issues of seeking optimal treatment are similar.

In regard to your being prescribed IVIG it might be that the expensive cost is a major hindrance under the public health system. There are very restrictive guidelines here in NZ for that reason. Here's a link to the NHS Scotland guidelines:

http://www.piduk.org/static/media/up..._march2012.pdf

I searched: "Scotland prerequisites for prescribing IVIG" to find these - there are also other interesting articles.

Keep persevering; the appointment went as well as could be expected given that you now have a new/confirmed diagnosis - think of it as finally getting you and the doctor reading from the same book - she now has to just catch up to you and read from the same page . . . hopefully

All the best for the nerve conduction studies - have you had these done earlier? If so a change could confirm the progressive nature of the PN. However it's not unusual for NCV to give inconclusive or false negative results in some cases.

Thanks Bluesfan - very grateful for the link on IViG in Scotland as well as your continued support and advice. I observe that the listed Richard Heriot was the immunologist and pathologist who analysed my first skin biopsies taken from my neck. There were traces of IgM found but that was all.

I'm most worried about the worsening of resting bone pain and weakness and she did say that this isn't usually associated with Sjogrens. I wish I could find the vocabulary to describe this type of pain and limb weakness. She kept coming back to Pregabalin as the next treatment she wants me to try. Not going to though.

So I decided to write to her after I listening with my husband to a recording I made of this consultation. It made me realise that I really laboured the point about skin biopsies because of the negative results last year and the use of the word "presumed". She's not a keen listener and interrupts often so I ended up sounding a bit like a stuck record about this matter and she became quite exasperated. So I wrote her a letter today which she can't interrupt! Lupus friends tell me it was articulate, balanced and respectful.

Here's what I said about this skin biopsy issue; "I’m reasonably familiar with rheumatological terms now but am still finding my vocabulary where neurological symptoms are concerned and do not want to take up your valuable time with symptoms which seem to relate mainly to rheumatology. If I appeared overly preoccupied with the skin biopsy results of last year it is because, in his letter, Dr (rheumy) referred to my disequilibrium and small fibre neuropathy as “presumed” and it is my experience that things described as presumed do not warrant disease modifying treatments – should these be required further down the line."

Also is the relevant paragraph re Gabapentin in case it helps you with your decision:

"I also should explain that, for me personally, drugs such as Gabapentin and Duloxetine (Cymbalta) are more sinister than “big guns” and immunosuppressants, because I have found them very hard to wean off, found them to alter my moods, digestive system, exacerbate Sjogrens dryness and affect the workings of my brain. And unlike with steroids, there is no medical support when trying to come off them. Whereas the DMARD therapies I have tried to date can at least be stopped immediately without any ill effect, apart from probable flare up of symptoms. And anti-rheumatic drugs are also very well monitored. The same can be applied to IViG I believe because it's administered by infusion"

I stuck it in the post box and felt a great sense of relief at having got all this stuff off my chest!

Very interesting link thanks Summerfan - doesn't swing it for me though. Gabapentin made me very angry and unhinged. I only lasted on it for a few weeks - I was totally bombed with visual disturbances and fatigue and my husband said my personality changed. I don't know if our neuros are right about immunosuppressants and these big guns. Certainly steroids and the four disease modifiers I tried (and had allergic reactions to after a while) were easy to stop and I was very well monitored on them. They seemed to help a lot with neuropathy and I believe this is because they tackled the systemic inflammation which I think causes my neuro symptoms.

I wrote to the neuro today. See my response to Bluesfan if interested. Mat

Thanks for the update.

I felt certain this neuro would change her tune after learning of your Sjogren's Dx...and she did to some degree.

However, her fear of biologics/treatments may cost you in the end.

IVIG is KNOWN to help autoimmune based neuropathy/SFN and tons of documentation on this subject. The guidelines for Scotland use of IVIg is 4+ years old...and likely has been updated since that time. It is definitely worth inquiring about this. However, they typically don't approve such a treatment with 'clinical' only Dx...and would likely require confirmed biopsy showing SFN.

There is also plenty of documentation for use of immunosuppression in this type of condition...with positive results. Cellcept would be worth considering. Doing nothing will guarantee further progression...so trying something is worth at least slowing this progression. I don't understand her comments basically saying you can't be helped at this stage...that's an assumption with no logical documentation...especially since these meds have a history of helping. Otherwise, no one would be getting treated across the world...and that is just not the case. We ARE getting treated and it's helping. There is some damage that becomes permanent with Sjogren's, but certainly not all, as she seems to think. O hope you don't give up. Push for some sort of treatment (other than masking with Lyrica) to slow progression and reduce symptoms...at least TRY.

Thanks Enbloc. I will keep trying - can't give up after getting this far don't worry! What do you think could be causing the weakness and pins and needles in my arms if not SFN? Do you think there's any chance that something will show up in my nerve conduction tests this time? My reflexes were fine when she checked my knees but didn't respond when she checked my arms/ elbows. I feel my elbows are at the heart of things but it seems odd it's in both elbows and pins and needles is in both hands and night knuckle pain in fourth and fifth knuckles on both hands - although marginally worse on right side always.

There was a fundamental contradiction in what she was saying. She told me that if I'd been on immunesuppressants now then it would be very hard for her to gauge changes and progression of symptoms - and yet she wants me to try Pregabalin/Lyrica? She calls drugs such as Rituximab "sinister" but is happy to dole out drugs such as Gaberpentin and Pregabalin - which as far as I can tell are mind altering?

I did listen to my recording of this consultation and my husband commented that I kept rattling on about the punch biopsies. As you can see in my reply to Bluesfan I have explained to her in a letter that, even with her clinical judgement that I have SFN - in my experience this will always be "presumed" without hard evidence to confirm.

She said "we can't keep cutting bits out of you on a weekly basis?! This isn't necessary when I believe you and am happy to change this from presumed to a formal diagnosis now we know you have Sjogrens ". But where funding for IViG is concerned it would probably be a different matter as you say. On the other hand a skin biopsy wouldn't take long to do and yield answers, so I think the nerve conduction tests are more urgent and, awful as it is to say, I need these to be positive in order for her to support me taking further proper medications. Fingers crossed, if only I could! Mat x

Mat, I do not have any kind of auto-immune disease nor SFN. However, I do know a fair amount of immunology.

I am concerned by this "She calls drugs such as Rituximab "sinister"" [the emphasis is mine].

The immunology of Rituximab is well-understood and it can be effective in treating many auto-immune diseases though, same as any other treatment, it can have adverse side-effects.

It is on the World Health Organization's List of Essential Medicines, a list of the most important medications needed in a basic health system (http://www.who.int/medicines/publica...5_8-May-15.pdf).

Maybe you could seek the views of your neurologist about this?

I couldn't agree more with you. It concerns me a lot too. I will just have to hope that my new rheumatologist is more enlightened!

Hi Mat

Thanks for sharing your experience with Gabapentin (in your reply to summerfun). I've decided not to take it but need to find the clinical evidence to convince the doctors of why I shouldn't take it. Lot's of lateral thinking and research on my part and I now hopefully I may have enough to reason it out with them. (The more I research the more I realize what the doctors I see don't know ).

Your letter to the neuro was a good idea - I was pretty much dismissed by the neuro dept after one appt. (basically - 'Yes you have neuropathy but we don't know what's causing it - probably your autoimmune condition'). Given that the only offered treatment was (you guessed it) Gabapentin there's not much reason to go back. I've found letters to my endocrinologist to be very useful especially if I want to explain something I find difficult to verbalize or if I want to present a convincing case for trying something different. Also I do have to maintain an ongoing relationship with the department and letters provide a documented record that is often lost in verbal communications.

Re your difficulty describing the bone pain - the McGill Pain Questionnaire may help (there are short & long versions) - a search for it should bring one up straight away. Concerning the worsening pain - I'm currently researching the connections between degenerative disease, nutritional deficiency and pain. Sorry I don't have full answers yet but there appear to be connections between auto-immune induced metabolic imbalances and the resulting deficiency or excess in availability of nutrients used by the body, not only to prevent degeneration but also to ameliorate pain. This may not be something you want to look into at this stage but just ask if there's any topic I can keep an eye out for in my reading that might help you. (Do remind me as my short term memory problems mean it may slip my mind.)

One thing that's helped me is to look closely at previous blood test results and to investigate those that may be repeatedly borderline, then to research the connections to associated conditions, medications or influences that this may have. Hard to explain that in context of your condition but I have found that autoimmune conditions tend to throw up all sorts of anomalous symptoms and co-conditions that often are masked or attributed incorrectly to the primary disorder.

One final thing; Am I correct in remembering that a burning mouth was one of your symptoms? If so this article might interest you: (if not ignore this)

Burning mouth syndrome

Warning it's quite long but could help explain what/why you have that symptom. There is a possible connection with Sjogren's mentioned in the paragraph "Clinical Presentations".