Skin Biopsy showed inflammation so will steriods or iVig work?
 

Hi all,

I have been on here a few times, I have SFN full body. I am in UK and have just had a letter my neurologist sent to my GP read out in full. These include comments on what the skin biopsy showed. My skin biopsy results came in January but my neurologist works in another country for a few months so was away and has only just commented on it.

my skin biopsy results were a bit unusual, it showed an increase in the nerve fibers rather than a loss. My neurologist has said this is consistent with inflammation. it was suggested by the professor I saw in London that it could be neuroinflammation or possibly caused by the drug Metronidazole. My neurologist thinks its not the Metronidazole as I would have had to take it for a long time before it causes these changes. I am lucky as he actually specialises in PN, so is quite clued up on SFN.

I now have an appointment to discuss steroids and IVig, It was advised in the letter this is something which shouldn't be taken lightly. He advised with IVig I would have to go to day clinic, for 5 days to have the treatment. I am also confused as how I understand it has to go to a panel in the UK, I am sure this is correct as i have checked out the criteria online, SFN isn't on the list!. There has been no mention of this in the letter, only that it will be given on a trial period. It maybe because the skin biopsy showed inflammation I don't know, but I am keen to get my appointment earlier so I can find out.

I just wondered, so how I understand, if there is inflammation going on , will this help? I really hope so, I was hoping it was the Metronidazole so then I guess it wouldn't get worse, now the neuro says it isn't, there is no chance of getter better or the nerves repairing.

I would be grateful of any comments :-)

Well, just because the neuro SAYS it isn't doesn't mean it isn't.

Most drug reactions never get to a doctor, for them to see. Also some doctors will deny a drug's involvement consistently.

And finally a doctor's OPINION is just that, an opinion.

So the few patients who make it to the doctor, will be extreme and persistant, and few. There are some MRIs on the net showing demyelination in the brain, white spots on the films from metronidazole. These extreme patients were severe and on the drug a long time.

There could be another reason for your findings. The skin biopsy is rather new out there and not 100% understood. And you have only had the one.... it would be interesting to have another down the road to see if there are any changes.

I went back to your earlier posts. What did you take the metronidazole for? It is possible that the infection itself was the culprit, and the drug is just clouding things.

Did you ever take steroids to see if they dampen your symptoms? This would be a good test to show inflammation, which if they work, could point to using the IVIG then.

Hello there Mrs D, thank you so much for replying.

I took the Metronidazole for a Bacterial Vaganosis, I took one lot in the November 2012, and the infection returned in Dec 2012 so took another lot.

I have never had any treatment with Steriods, i haven't seen my neurologist since the biopsy in January. I am hoping to get an appointment asap, as otherwise i have to wait until August. Do you think steroids would help if it is inflammation, or even ivig. If they did help could this actually get rid of the disease and sort the immune system out? sorry i don't know a lot about steroids and ivig.:confused:

That is a long time ago.... What drugs are you using now?

All including OTC ones? Have you examined your activities for toxins? Solvents, heavy metals, vaccines? The fluoroquinolones are known for delayed reactions...more so than metronidazole.
But metronidazole does have the warnings now about neuropathies.

Are your symptoms today, disabling, very painful ...enough to do IVIG?

I haven't used any drugs, the ones I use to treat my symptoms are Lyrica 50mg am 50mg pm and amatriptline 20mg. they are not disabling, I am quite well , although the symptoms are in my face and mouth, even eyes now. I had a baby in Dec 2011 I took metronidazole when I was pregnant and never had any problems, I have also taken it in my twenties and never had any problems. The only thing is, my husband is now having electric shock feelings in his fingers and toes, I hope this isn't some how related! So Mrs D, do you think IVig or steroids could help and get my immune system back on track, i'm not sure how they work! many thanks again

After women have babies, their systems are often depleted of nutrients. Esp Omega-3's, B12, folate

Sometimes just correcting a nutrient issue fixes things after a baby. Also some women get low thyroid after a pregnancy.
But then some autoimmune problems rear up then too. So it is difficult to say what is going on with you.

I'd look to your environment for sure, since your husband is having issues. Could be food (gluten) or inhaled things.
Heavy metals are sneaky for example.

You could ask for a brief steroid treatment. Have you tried aspirin? Aspirin I find (I use AlkaSeltzer because it is dissolved there) very helpful at times. But I do not use it everyday because it can lead to GI bleeding. Response to aspirin is often a clue to inflammatory PN.

Hi there, I have tried alka seltzer, it didn't work for me. My husband is a painter and decorator, i'm not sure if paint fumes or anything like that can cause issues,.we have an open fire, he is always burning all sorts of things on there, i'm just trying to think of anything it could be, strangly my sister is now being investigated for SFN, as she has had abnormal sensations all over her body, no burning but hot feelings and crawling, she spent a lot of time at mine when going through a rough patch, it is all very worrying and making me think this could be related somehow. We are a very strange family! haha

Burning stuff in the house... I get asthma from birch wood.
Then there is the monoxide that could be eeking in ... Lowered oxygen in the room while the fire uses it up.

If you burn plastic, or rubbish...those fumes can be toxic.
If you burn treated wood...there can be arsenic released.
Paper with dyes on it can be difficult.

I'd get some heavy metal tests if I were you.

The fellow who painted our exterior home last summer got lead poisoning working on a farm house. He told me how sick he got!

Latex fumes are less problematic, but oil based paints, have mineral spirits which over time can be bad for you.
http://www.uic.edu/sph/glakes/harts1...enthazards.txt

Thank you, I will mention all this to the Neurologist when I see him next. I am just wondering can IVig in some cases actually cure the problem or even steroids, I have heard something about steroids can in the past but I didn't really understand.

I have to wonder why they didn't assess the morphology (condition) of the fibers as well. This would be more conclusive then the increased fibers alone...but increased fibers IS a sign of inflammation, from what i have learned. If the biopsy showed segmented fibers, or swollen, or tortuous fibers, then it would be even more definitive.

That being said, I do think a trial of steroids should be considered first. Just a short taper pack/course to see if the symptoms subside at all, like MrsD said.

But even if it doesn't help, trying IVIG would be the next consideration, as it works differently then steroids.

Hi there,

Thank you for your reply enbloc, I was wondering, if it is inflammation, could steroids actually sort out the problem, I mean if it did work would I take this long term, sorry I am not as clued up on this as others.

If it IS inflammation, yes & no to your question. Yes, it can help on the long term if you kept taking the steroids, but no, it won't 'fix' the underlining problem. It will only reduce the inflammation. Steroids are, in fact, good at reducing the inflammation, but they come at a hefty price with long term/permanent side-effects.

If you try a short course of steroids, you will know in a matter of days to a week if they will work for you. If they do, you might still consider trying the IVIG. Both carry risks, but steroids (in my opinion) are far worse in regards to damage to the body. I have Cushing's syndrome from years of steroid use for my inflammation. The damage I have is now permanent. The side-effects are many with steroids...even lower doses. If you do have success and decide to stay on steroid for a while to see how it goes, play with the dose a bit until you find the LOWEST possible dose that provides the symptom relief you need.

You should still try to find the underlining cause (not always found though).

I have had both of these RXs. A dose pack of steroids does calm my symptoms down. I have been getting IVIG for a few years now. It does help me but for the last several months every time I have the Rx I'm so nauseous for days. I have to Zofran to even tolerate the nausea.
I get the IVIG 2 days in a row once a month.
I would try the dose pack first and see how that goes. They IVIG a is very expensive so it can be difficult to get approved.
Not all doctors investigate whether meds can cause neuropathy. I know mine happened from Avelox. When I told my neuro what I thought he said I don't think so while he was looking up the drug on the Internet to see what that said about it. I was shocked. Many doctors were told on the beginning you had to be on it for a long length of time for this s/e. It doesn't say that anymore. It can be very frustrating sometimes trying to be heard.

I forgot to say if you get the IVIG Abd they give you steroids with the infusions keep an eye on your B/P. Mine got very high with the combination of the two. I made them stop the steroids and it went back to normal

And--
 

--I think you need that heavy metal testing, and maybe testing for levels of solvents in your serum (if they have the capability to do that; such testing is not widely available) . From what you described earlier, I am suspicious that you and your husband may be experiencing reactions to toxins--and many of these substances are neurotoxic.

Hi Glenn,

Thanks for your reply. As I am in the Uk I haven't really heard of heavy metal testing. Do you think it could be from the paints he has used in the house? I know he has sometimes used paint which has been left over. Hubbie is from Turkey so he seems to think it is Ok to burn anything on our open fire. It sounds a bit mad when I tell people. So do I just ask for heavy mental testings? I am seeing my neuro in August, I will take my husband with me and explain he has had problems too.

Yes, heavy metals.... arsenic, lead, mercury, cadmium, chromium etc.

Also if you have well water to drink, I'd get that tested too. Well water can be contaminated with arsenic. Arsenic is a classic cause of PN.

If you live in a really old home.... even wallpaper had arsenic at one time:
http://www.dailymail.co.uk/health/ar...d-Britain.html

THank you Mrs D, I am going to ask for this testing. Do you think my GP can do this or are these blood tests specialised tests?

I think the tests themselves are common for heavy metals. I am not familiar with solvent one Glenn mentioned.

The test itself does not require fancy equipment like antibody testing does. But it may require a gas chromatography machine.

It is just that GPs may not order the test often, and be familiar with it.

If either or both of you test positive you'll have to get that baby tested too. We had our son tested for lead... and he was negative...that was years ago. We live in an old house (it is 100 yrs old in fact this year!)

Our house is about 80 years old, we moved here about 4 years ago. I have another son who is 7 years old. He has not complained of any symptoms. I just hope my neurologist doesn't laugh at me when I ask for these tests. I will tell him I am worried. Now am thinking I want to move!