PMR - Facial numbness

[Sunnyd7]

Hi all! I am new to this community but have received many answers and information that helped me to believe I was not imagining the things happening to my body.

Diagnosed with PMR in September 2017. I take 7.5 mg of Prednisone and do quite well with that. I also take Vitamin D (2000 IU), Magneisum Citrate (250 mg), and vitamin B complex daily.

My most recent concerns have to do with tingling/numbness on my face and tongue. It is worse on some days, but there is hardly a day that goes by that I don't have some facial numbness or tingling.

Also my tastebuds are off, things either have no taste at all or they taste bitter.

Has anyone experience either of these?

[Hindags]

I have not your experience but I suspect someone will be along soon with some information. I've had tingling in my legs on and off for a few years. No MD has had anything to offer by way of explanation. So no help.

I do have a few questions that might help others help you.

How long has this been going on? Is it getting worse? Is there any pattern to this tingling? Is it a 24/7 thing? Is it related to chewing? Do you have any mobility problems with your head or neck? Any known allergies? Any ear symptoms? Any visual symptoms? Any headache or sinus issues? Any postnasal drip,? Any dental problems? Any scalp tenderness?

Have you considered shingles? My daughter and I have both had shingles involving the facial nerve. But that would probably be one sided.

And that does it for me I'm afraid.

Does your MD know about this?

Great going by the way. Down to 7.5 in just a few months. However did you manage that? What dose did you start on?

[SheffieldJane]

You are on a very low dose of Pred. If you were diagnosed with PMR in September 2017. Did you experience relief of your symptoms on your starting dose? What were your initial symptoms?

There are many conditions that produce the symptoms of tingling and numbness in the face. Even extreme anxiety which I have experienced myself. Many moons ago. On the serious side of the spectrum there is tingling an numbness as a presenting symptom in Multiple Sclerosis. It can also indicate Bells Palsy or some kind of nerve damage.

If I were you, I wouldn't be entirely confident in my PMR diagnosis and would want my doctors to run further tests.

You are very welcome to this site Sunnyd7. But your PMR is not behaving in a typical way. The loss of the taste sense may indicate something else entirely.

Perhaps if you expand a little on your story, someone maybe able to help you with some ideas of what you are experiencing right now.

[Sunnyd7 in reply to SheffieldJane]

I did experience some relief of symptoms at 5 mg but there was still pain. When I increased to 7.5 mg all my pain went away, except of course for the morning stiffness and pain. Initially I was fine, woke up with pain along my clavical bones and shoulders couldn't hold the hair dryer or put on a shirt without a lot of pain. Then the pain came in my hips I could hardly walk. Had a somewhat elevated sed rate, but my CPR was ok. Prompting the GP to give me 5 mg of steroid (I asked for the lower dose first and thought I would move up if necessary, easier to wean off when I could go lower).

My GP did mention MS. I will ask my Rheumy about the bells palsy and MS. Thank you for your response this numbness is rather scary and I do hope I can find out what is going on.

[SheffieldJane in reply to Sunnyd7]

Hi Sunny,

I have no medical background. I don't think your Rheumy would be interested in my ideas. I am only going on personal experience of PMR ( I would have been in agony too on 7 mgs so early in the process). You peculiar symptoms do need some qualified attention though. Good luck and let us know what happens.

[PMRpro Ambassador]

Have you a good reason for taking the vit B complex? Did you have your vit B levels checked before taking it? If your blood levels are OK you do NOT need vit B complex supplements. Sometimes too much is as bad as too little. Too much vit B complex can cause sensitivity to sunlight and numbness/tingling - does it tend to happen n days you are out in the sun more? It can also cause taste changes.

I think it would be a good idea to check with your doctor as to whether you need the B-complex for a start. And at the same time, mention your symptoms.

[Sunnyd7 in reply to PMRpro]

Follow-up: I stopped taking the Vitamin B and my facial numbness did diminish but is still present. My taste is still off though. I have an appointment on November 30 with the GP I will tell him about it.

[PMRpro Ambassador in reply to Sunnyd7]

It may be the nerves need a while to recover - patience is needed too.

[Sunnyd7 in reply to PMRpro]

Thanks, I hope so.

[Sunnyd7]

I initially started taking the Vitamin B complex to help with fatigue and anxiety. I haven't had a blood test to check my levels lately. But as of a year ago I was on the low end of the level. I did stop taking the Vitamin B for a time as I couldn't afford to buy more, I was off 30 days, these facial symptoms did not subside.

However, I will bring this up to the Rheumy as well along with the taste buds. Thank you so much for your response. I appreciate it.

[creative89]

Hi....I have been going to ask about numbness too...face, and other parts of the body. Also have no taste, but occasionally do get a taste of food. Not exciting to eat, but have to keep it up. Very hard to cook and keep asking what does it taste like? Cardboard? I have been on pred for 6 months and am tapering at 20mg now and going to go slow. Been difficult to get prescription correct and finally should have 1mg so can begin a slow taper. Keeping my spirits up and trying to pace, but after a very active life it is hard to accept the need to slow down....am 74 and always say I am 12. Mymantra is keep smiling as it's takes less energy than tears.

[Sunnyd7 in reply to creative89]

Hi creative69:

Did you numbness start right away or after you were on prednisone for a little while?

[creative89]

After several months seems like. it's hard to keep it all straight as so much changes. Notice it around the mouth and chin....also very loose lips and tongue..lazy I'd say. Skin is so touchy like new sunburn scratched. I haven't mentioned it to doctor as don't see them much. Just thought it another effect.

[Sunnyd7]

I am going to mention my numbness at my next Rheumy appointment. I want to know if there is something else going on. Perhaps you should mention it to your doctor to make sure it is not another complication or something new. I wish you the best. I will update after my Rheumy visit in December 2017.