temple pain

[lennysmummy]

Today I’ve had intermittent stabbing pain lasting seconds in right temple. Should I just see how it goes? Still on prednisolone 11mg for going into 4,weeks.

[SnazzyD]

Hello, how often does it happen? Do you recognise it?

You say had a positive biopsy so you definitely have GCA. You started Pred just before Christmas, 4.5 months ago, and you are already on 11mg. That’s pretty low and for comparison, I took over a year to get that low. Is that reduction pace as you were told? The first 12 months is a vulnerable time for flares. In addition you have had chronic upset gut so your Pred absorption might have been affected. That’s difficult to know. With these things in mind I’d be keeping a very good on this stabbing pain. Any other odd symptoms?

[lennysmummy in reply to SnazzyD]

To be honest the consultant wanted me lower by now. I was only ever started on 40mg because of blood pressure being uncontrolled on them. From 15 I have dropped to 12.5, then 12 for a month and then 11. Today has probably been one of my best days with regards to muzziness and other effects of the prednisolone. It is just this. Teeth have got very sensitive last few days but I’ve seen that can happen. 👍

[SnazzyD in reply to lennysmummy]

But you have confirmed GCA? If you do have a flare due to reducing so fast, do they have a plan if a flare occurs? I’m not saying it definitely is a flare, it could be a brewing shingles or other cause of neuralgia. But reducing to avoid one issue like blood pressure needs a plan B if your autoimmune condition flares as a result. Have they spoken about a steroid sparer?

[lennysmummy in reply to SnazzyD]

No I haven’t been spoken to about that. I see her again on 5/6. The only other thing I’ve noticed is today I put on a pair of trousers from last summer and cannot keep them up, I’m obviously losing weight .. but obviously not upper back and face. Bras are tight! 🙈

[PMRpro Ambassador]

Is that the side you had the biopsy?

[lennysmummy in reply to PMRpro]

No it’s the opposite. It’s not continuous, just random. 😏

[DorsetLady PMRGCAuk volunteer]

You posted a couple of months ago about head pains - were they resolved successfully?

Think you need to follow this up when you can -it may be connected to your GCA, it may not, but you do need to find out.

[lennysmummy in reply to DorsetLady]

Yes I did. I have been having conversations with the rheumatologist over the last ) weeks, mri was done, they were please as only specks of foci showing. Bloods were done again Thursday before last. All cane back good again apparently. Maybe I’m stressing out too much. 😄

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

You may be… but it’s very understandable. 😊

[Grammy80]

I'm a GCAer and have been for three years. It took me over two years to get to the level of pred you are on, and then I had to go back up to 40mg per day. I'm thankful you are in touch with your rheumatologist, and I hope he/she sees the wisdom in going a bit slower. Slow as molasses! This is not advice, just my experience~ I was told to cut by .5 every four weeks, and I'm also on TCZ. 💞

[lennysmummy in reply to Grammy80]

Hi I’ve taken another 5mg an hour ago as the discomfort is lasting longer and not as fleeting. I’ve never really thought I was on enough dosage. I think Aldo because of the side effects I have on them it was another reason for my consultant to get me down quicker. Obvious nothing is open now until Tuesday. I appreciate your advise and will just hope that another 5mg takes the edge off.. again it’s quite late now so I expect a restless night. I’m really concerned about losing do much weight now as I hadn’t really noticed as to be honest at home I’ve been in loungers and jumpers until now. X

[Grammy80 in reply to lennysmummy]

Trust listening to your body. I always felt the side effects were just part of the treatment if I wanted the disease to quiet down....I think I'm close. 🤞🏼🤞🏼💞

[lennysmummy in reply to Grammy80]

Thank you. ❤️

[SnazzyD in reply to lennysmummy]

If it gets worse you also have 111 to call, or A&E. you may lose a day trying to get through to rheumatology on Tuesday too.

[agingfeminist]

losing weight shouldn't be ignored. make sure you bring that up with your doc. Hope everything resolves soon.

[Viveka]

So according to my rheumy there can be a low level of rumbling intermittent GCA activity like odd twinges and tingles and stabs that should be monitored but not acted on. Then there are signs of GCA getting the upper hand which need more pred - eg a flare. The trick is to identify which is going on. That's why I always suggest people keep a symptom diary.

The increasing head activity - stabs top/side of head - happened to me when I reduced too fast and hit 17.5, so a couple of months in from 40. I then sat around 20/17.5 for a few months. I was still getting a few symptoms after that but rheumy said not to worry about them unless they got worse and luckily they didn't.

Only you (and doc dependent on how good they are) can know what is going on, but you have been on a fast taper which suggests you need to slow down and you say stabbing is becoming worse which suggests somethign is going on.

Don't forget the flare protocol of going up plus 5 for ten days to a fortnight then returning to the last dose you felt comfortable or just above it. Best to be steady rather than up and down with the pred.

Good you are seeing rheumy so soon.

[Fortunada]

around 11-12 mg it’s tough. Then later at 5mg and lower. At that lower stage I slowed a bit rather than increasing. My rheumatologist ignored those same symptoms. The blood tests tell the story. It was good advise for me.

[lennysmummy in reply to Fortunada]

Thank you for your reply. So do you think all the while bloods every 4 weeks are coming back fine just ride it out? I’m definitely not going to drop lower for a while even though from tomorrow is my 4th week on 11mg. X

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Bloods are not the be all and and all -and even if raised they do have a habit of lagging behind symptoms. So symptoms are the key-and no reducing for time being. In fact maybe an increase is required.