Back on 30mg😩
Posted , 12 users are following.
After reducing to 7mg I’ve had a flare up and back on 30mg
My mouth and face feel numb! Is this normal? When I mentioned it to my Rheumatologist he had no comment!
0 likes, 8 replies
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Notes on Back on 30mg😩
lynda62707 anne28129
Posted
Hi anne, I'm only on 15mg, but my mouth, hands and feet are also numb! Not pleasant at all!
I'm so sorry to hear of your flair. Man, this whole journey is BRUTAL!
Sending good thoughts and kind wishes.
Please keep us posted.
EileenH anne28129
Posted
I would say it isn't either normal or usual. Though that sounds like a fairly normal response from a rheumy when asked a question that doesn't fit their tick boxes.
What sort of flare? It isn't usually necessary to go back to 30mg after a flare at 7mg (providing of course it was dealt with in a timely manner) for PMR - or is your diagnosis GCA?
anne28129 EileenH
Posted
After a flare up the doctor cried out me in 30 mg  and I saw my Rheumatologist within three days! He agreed that the 39 mg was needed but he’s hoping I’ll reduce 5mg a week till next get to 10mg
Mrs_Hobbles anne28129
Posted
Anne, I'm worried that your doc and rhumy are ok with you being at 30mgs for a flare, it's not enough to deal effectively with a flare, to my mind! Has your headache gone at this stage, last post you said you still had it after 6 days! I'm wondering if the mouth and face numbness is from A) the prolonged headache affecting the nerves in your face and mouth or B) as 30mgs is probably not enough to get rid of all the inflammation caused by the flare, is the inflammation affecting the facial nerves, causing the numbness! I think a call to your doctor might be in order to get some answers, seeing as your rhumy didn't even have the good grace to offer some explanation! I would also be very careful reducing by 5mgs per week, if your flare hasn't been cleared before you reduce, you WILL get another flare. Been there, done that, bought the t-shirt, if you take one bit of advice from me it's reduce S-L-O-W-L-Y!! There are a lot of people on the forum and nobody wants to be on pred longer than we have to be, but EVERYONE will tell you to reduce slowly!! You get nowhere trying to buck the system and reduce quickly, it just doesn't work! Let us know how you're getting on, hopefully the numbness will improve quickly🤞
Anhaga anne28129
Posted
I agree with Mrs Hobbles. Don't reduce until the symptoms are fully controlled again, and maybe you do need more if it's GCA rearing its ugly head. And then a slow taper is important. Weekly reductions are too fast. Good luck!
EileenH anne28129
Posted
If this is a flare of GCA then maybe 30mg is enough - but I hpe your original dose was higher since 30mg is a neither one thing nor t'other dose: too high for most PMR and not enough for GCA.
And I won't repeat the excellent advice Mrs Hobbles has given - it is exactly what I would have said. If this is a flare of the vasculitis that could well be causing the numbness because of poor blood flow to the nerves. But it may also be a developing neuropathy so I'm a bit surprised the rheumy ignored it.
nancy02150 anne28129
Posted
Yes numbness if prevalent for me forever it seems. quite disconcertig at times...moves around too...lips, tongue, chin. forehead..... feet are almost always tingling or numb. I keep moving things to keep the ALIVE.!!! Figure it's a cause of prednisone and vasculitis combined. I have both PMR and GCA for 1.5 years I am 75 years old.
peggy_56092 nancy02150
Posted
During a recent flare, I had numbness of the face as you described, which started with my thumb, spreading to one or two fingers I would wiggle my fingers often. A week later, the veins in my hips/thighs seemed clogged, painful. I realized the next day after two ER visits (with no diagnosis) that I was having a flare. I might have recognized it earlier if I hadn't had an ulcer issue and lots of meds to deal with. I jumped to 15 mgs from 7 for a couple of days, dropping within one week, gradually, to 10 where I stayed for about a month. I am now working on 9-8 1/2 mgs, approximately 1/2 mg drop a month. Last year I was on 6 mgs for over a year but also had steroid shots in my knees and hip until knee replacement. So far no shots this year. PMR diagnosed Jan 2016, started with 15 mgs pred. I am 80 yrs old.