Is something else going on?

[Bro-]

I was diagnosed with PMR back in September. My Drs can’t understand why I’m getting worse and not getting any relief from prednisone. I’m now having pain through my whole body and pins and needles in my legs and arms- ended up in the ER last week with numbness in my left side of face . They ruled out a stroke but everyday having odd new pains, weakness and tingling through my whole body Neurologist put me on an anti- seizure medication to help with nerve pain - not really working . I’m wondering if it could be from long term prednisone or it’s wrong diagnosis? My body feels flu- like for almost 5 months- so frustrating and not sure where to turn. But something crazy is going on in my body . Sounds more like a neuropathy but what do I know. Googling too much. :)I am getting an MRI of my neck to rule out MS. Any input would be greatly appreciated if you have experienced any of this

Thank you,

Merry - also known as BRO 😂

[PMRpro Ambassador]

Technically response to pred is a criterion for a dx of PMR/GCA ...

However - 60mg is sometimes not enough so have they at any point tried a higher dose? One approach to getting GCA under control is a 3 day pulse therapy with methyl pred infusions of up to 1000 mg/day. If there is an absorption problem or a liver metabolism problem with prednisone (it must be processed in the liver to obtain the active substance prednisolone) it is bypassed.

Have they looked at the possibility of ankylosing spondylitis - it can mimic all the symptoms of GCA by causing reduced cranial blood supply.

But really - it sounds like something completely different.

[Bro- in reply to PMRpro]

No they haven’t tried anything else besides the anti- seizure medication to treat me for Trigeminal neuralgia- my Trigeminal nerve is slightly inflamed . But yes I like your idea of the infusions I will ask my dr since the prednisone pill isn’t really working . 60 was the highest I took because I had horrible side effects.

[PMRpro Ambassador in reply to Bro-]

Mmmm - but the side effect have to be tolerated to cure the problem if it is GCA. You are in the USA - have they not considered trying Actemra if they diagnosed it as GCA originally?But I would ask about the possibility of ruling out something like ankylosing spondylitis. Although they are doing an MRI which should show neck problems.

[Bro-]

Wow- a lot of it is familiar to me. What medication do you think caused your peripheral neuralgia and What were your side effects to the anti-seizure medication I just started a low-dose and I’m nervous to increase it

[Bro-]

Thank you! So informative. I believe mine is from the prednisone too!! I don’t do well on anti- depressants either and I’m definitely looking for an alternative but it’s hard to be treated until they definitely know what I have - especially since my bloodwork is so perfect everytime and my MRI and cat scans were normal besides tiny bit of swelling in Trigeminal. I think they all say MS which I don’t think or praying I don’t have it. This was really helpful because it sounds just like me- I have a dr appointment tomorrow and will ask a lot of these questions about the medication maybe I’m not metabolizing them either . I go into the same hole- happy you know your body so well it’s important!!

[piglette]

I think your doctors have got to admit that they have got the diagnosis wrong or possibly you are on too low a dose.