Quote:
Originally Posted by bluesfan
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!