Trip to the Er/ED

[Lenore58]

A day or 2 ago, I wrote in about experiencing vertigo. I tried the Epley Maneuver on myself, and have not had any more episodes of such extreme, dramatic vertigo. However, I was left with mild dizziness, such as when one has the flu and it feels like you are swimming underwater and everything seems unsteady. I've also had significant brain fog over the past few days. Sometimes I can't remember a word, or I stop mid-sentence and have trouble remembering what I was saying. I know it's normal to experience these things from time-to-time, but this was clearly more than normal over the past few days. I've also had extreme fatigue. I slept 10 hours yesterday, after being in the ER all day. (noon-8:30 pm) They did an MRI and a CTA scan, both with and without contrast dye. At first they were concerned about a finding on the MRI: "Questionable filling defects in the superior sagittal sinus and right traverse sinus. Findings could be further characterized with dedicated CTV head or MRV head. They then decided that the prior CTA scan was enough to clear me of anything wrong, and that it was a technical malfunction with the dye and technician. Needless to say I did not feel completely at ease. I also noticed on the MRI "Mild scattered T2 hyperintensities in the periventricular and subcortical white matter consistent with chronic white matter ischemic changes."

I'm hoping that the white matter comment is normal for my age (66) and not indicative of something like MS. The doctor did not comment on it at all, but I feel concern because my symptoms could certainly point to that (among other things) and Actemra has (very rarely) been linked to MS onset.

Labs that were out of range include :

Glucose 125 (High)...this is odd, because I eat extremely little sugar or sweetener and am very low carb. I know Actemra can induce diabetes

MCV 99 (High) Actemra can also cause liver and kidney issues

MCH 31.8 (High)

Neutrophils high, lymphocytes low (has been this way for a long time, probably due to pred.)

Globulin and EGFR CKD-EPI both low

Probably not associated with a flare, since both inflammatory markers were normal range.

Sed rate 4

CRP <0.50

Of course I've been googling my little heart out. Wondering if PMRpro has any insight from her research expertise.

Things I'm nervous about: Actemra-induced MS, Actemra-induced diabetes, Actemra-induced damage to liver and/or kidneys. And that there might be something on the MRI that indicated further testing, but was dismissed.

I was supposed to do my Actemra injection yesterday, but was in the ER, then too tired. I didn't take it today bc I am not sure I should stay on it.

I am thinking I should consult with a neurologist at Stanford or UCLA. My area is lacking in top-notch medical care.

I reported to my rheumy’s office. I have an appt. May 10th, trying to get in sooner.

[PMRpro Ambassador]

"I know Actemra can induce diabetes"

Where did you derive that opinion from? There is a case report that discusses the possibility it may be the case but the discussion doesn't say that it DOES and it doesn't appear to be that Actemra induces diabetes but that it possibly fails to stop it happening.

"We propose that the use of anti‐IL‐6 therapies, such as tocilizumab, might be ineffective in preventing type 1 diabetes, and that although there is currently no evidence that anti‐IL‐6 therapy precipitates type 1 diabetes, this possibility cannot be ruled out, because it has been reported that the IL‐6 expression is highly reduced in insulin‐deficient islets of patients with type 1 diabetes"

ncbi.nlm.nih.gov/pmc/articl...

In fact, am I right in thinking you have been looking at case reports - beware of taking them as gospel, correlation is not causation especially in isolated reports and I think you may be scaring yourself unnecessarily. It is very easy to use Dr Google and pick out the end of the world stories - they are the ones that always come up and that is what makes doctors disapprove of patients doing it. Much larger figures are needed to identify real effects.

An MCV of 99 would usually be considered as normal range is 80-100, occasionally the upper end of normal is taken as 95. 99 isn't far out, the computer would flag it abnormal if it were 1 outside that lab range. The MCH figure is also debateable, 26 to 31 or 33 are common normal ranges

Pretty much everyone at our age has white matter changes - I think they would have registered something outside normal age-related changes.

But this is something you need to discuss with your medical team - see how they account for the results.

[Lenore58 in reply to PMRpro]

Oh! I am mixed up; it’s prednisone that can induce diabetes.

I don’t ever take anecdotal correlations as causative effects with medications. It boggles my mind how some people think every little thing is a side effect of whatever drug they are on, when there is no proven connection and it could be from a million other things.

I just confirmed that my MCV and MCH are in the normal range. But they are flagged as low on my lab report from the hospital. They must use a narrower normal range than other labs!?

“Pretty much everyone at our age has white matter changes - I think they would have registered something outside normal age-related changes.” Thanks for that-I hope it’s just age-related normal changes.

[PMRpro Ambassador in reply to Lenore58]

I did wonder if you had got them mixed- and after all, there is so much new about the whole thing it is very easy to mix anything up!!!

But even pred and diabetes is really steroid-induced diabetes and you can help that by cutting carbs which reduces the risk of progressing to Type 2 diabetes.

It'll be fine

[Lenore58 in reply to PMRpro]

Thank you Pro!

[Viveka]

Just anecdotally there are lots of people in older age who experience vertigo. I was at pilates with a woman who had had a bad bout and had to do everything sitting or standing. I got it for a day because I bounced into bed and plonked my head on the pillow too enthusiastically - major symptoms went off after a few hours but I had the residual swimminess for days.

The other thing is that your adrenals may not be helping, exacerbating the brainfog and dizzy/wobbly. I think you are in the zone. Anyway good to get it properly checked out, but hopefully it's one of those things that will gradually resolve.

[Lenore58 in reply to Viveka]

Thanks for those thoughts. It does seem to be resolving. Brain fog and dizziness are both lessening each day. Not gone, but definitely improving. I’m grateful!

[alvertta]

good day from Canada. I have had exactly your symptoms for two days. I am on Actemra every 3 weeks plus 3 pred per day. Today I tried taking 4 pred to see if it’s the reduction ….my last blood test two weeks ago was all good.

I am hoping the fuzzy dizziness fades Will let you know