Ongoing headaches

[Bummed24]

I have been on 60 mg. of Pred x ten days for GCA/PMR and now have headaches and scalp tenderness worsening over the past 24 hours. Should I increase to maybe 62 mg. today?

Second question, in looking ahead in hopes of the headaches going away.....my rheumy who advocates for shared decision making, suggests I be able to wean quicker off the Pred because I am starting on monthly Actemra infusions. What is your advice for weaning with Actemra?

Traditional guidelines as noted on this site, or accelerated with Actemra?

(My elevated Sed and CRP rates returned to normal two weeks ago.)

Thank you to all for your sound advice and encouragement I have received recently for this life changing experience!

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to try 65mg today… and contact your Rheumy asap…

You may well be able to taper more quickly once on Actemra - but it’s takes time to work, that’s if it does… it doesn’t for everybody.

So out that idea on the back burner for now - and concentrate on current situation - and getting GCA under control with Pred.

Just for info I required 80mg for 2 weeks [then down to 60mg, I had already lost sight in one eye] and it still took best part of that initial period to get all head issues under control.

Please speak to Rheumy tomorrow for guidance… and let us know.

[Bummed24 in reply to DorsetLady]

I will check tomorrow. I am sorry you required 80 mg., but is helpful to know others have been in this pathway too.I wonder if maybe being a bit more active this week may be a cause of the increase in symptoms?

[SnazzyD in reply to Bummed24]

What do you mean by more active ? In my early weeks I had to be careful not to do much otherwise the symptoms felt like they were waiting to pounce again,

[Bummed24 in reply to SnazzyD]

Increased time on stationary bike, twenty minute cardio workouts, in addition to daily thirty to 45 minute walks.

[SnazzyD in reply to Bummed24]

Jeepers. That’s quite a lot when your body is dealing with high autoimmune activity/inflammation along with a powerful medication at a high dose. You might feel jazzed up enough to do this level of activity but it is false energy and your muscles and ligaments will be becoming more prone to injury as the weeks pass.

[Bummed24 in reply to SnazzyD]

Yes, I have felt jazzed with the Pred. Plus a healthy dose of denial, I suspect. And a vague hope of exercise helping to heal. I have been resting lots too, but I probably have tipped over the edge with exercise even though my limbs and energy level feel good. And I was hoping the exercise would enable sleep at these high doses of Pred. Fix one problem, cause another. Moderation. 😉

[PMRpro Ambassador in reply to Bummed24]

This is one of many places where increased exercise will not heal - it is likely to cause trouble as you put more stress on an already very stressed and inflammed vascular system. You have a very serious systemic illness - your body needs rest and TLC for now. Once you are healing it will be different but for now - less stress in EVERY sense.

Would you increase your exercise to "cure" proper flu? Or Covid? This isn;t any different.

[SnazzyD in reply to Bummed24]

Yes, sleep at these kind of doses can be like a unicorn in rarity. I existed on naps. Your energy level isn’t real, believe me!

[Bummed24 in reply to SnazzyD]

OK. I am going for a nap.😉

[mipole in reply to Bummed24]

To help me sleep at night I take one Magnesium Bisglycinate. It really helps. I am on just 1 and a quarter of pred now. When I as on more I found it better for me to have it in the morning otherwise I was having to get up every 2 hours at night to spend a penny that was very exhausting. I heard recently that my Brother in law has GCA and is finding life difficult. My very best wishes to you in your fight against this awful disease.

[DorsetLady PMRGCAuk volunteer in reply to mipole]

Hope you tell your BIL about this forum and the charity

[mipole in reply to DorsetLady]

I most certainly told him about the website , first thing I did My sister and BIL are a very awkward couple. Proud, She won't even look online thinks the doctors will know it all. But I think they were reducing him too fast, Latest I hear is that one eye has misty vision. He was started on 60mg pred. Then within a 3 months he was down to 20 mg. He still has headaches They live in Clacton Essex. I live in Wales. My OH is a Dialysis patient. I currently have Osteoporosis treating with TEROSA. 2 Leaking heart valves, and keeping away from Stress (although currently work is being carried out for my OH,s home dialysis. I keep away from it all as much possible. She keeps asking me about PMR, I give her the same information every time but she seems unable to take it in, she never has had an enquiring mind, I think she has been told that his GCA could become PMR. She is 5 years younger than me, I am 78. I will keep trying!

[PMRpro Ambassador in reply to mipole]

He is probably not on enough pred if he still has headaches. And GCA does not necessarily become PMR - some have GCA with PMR right from the start but the pred dose is high enough to manage all the PMR symptoms. But many have GCA pure and simple and never have PMR symptoms.

[DorsetLady PMRGCAuk volunteer in reply to mipole]

As PMRpro has said, he may already have PMR alongside GCA -or maybe not. Many only have one or the other.

But he does need to follow up headaches -and misty eyes…

[Bummed24 in reply to mipole]

Thx for the tip and kind words Mipole! I am looking into it. Like Snazzy said, " sleep becomes a unicorn in rarity" .

[Bluey-1 in reply to Bummed24]

Crikey, at the same stage as my journey with GCA, I could hardly lift my head off the pillow. Energy drained from me very quickly not helped by chronic insomnia. It took some time for the headaches to go completely but I had to pause most activity in the first couple of weeks or so of high dose pred. I was soon able to do gentle stretching exercises and 20 min walks (not always daily). I followed my body’s needs. When I was wiped out I rested. Someone on here said ‘treat yourself as a princess’. I’m still doing it now! Getting used to the new world was difficult when you’ve been an active person. I’ve felt much grief for the loss of my old life when I lived by my head not my body’s needs. I’ve not overdone it on the physical front and so far, so good. Hopefully Actemra will mean you taper quickly. Here in the U.K. I’ve not had that option, just taken it slowly with tapering pred.

[Blackcat1M in reply to Bummed24]

Cricky I cannot do that much and I am on 6mg pred phew!!!!

[DorsetLady PMRGCAuk volunteer in reply to Bummed24]

Think you may have answered your own question further down re activity.

[SnazzyD]

I would concentrate on what you need to do today and that’s get advice on dosing to get this particular storm dealt with. You may need much more than 60mg or perhaps a small increase. All your other questions need time for the answers to unfold. I know it’s nice to have some certainties at this stage but second guessing isn’t always helpful.

[Bummed24 in reply to SnazzyD]

Yes, one day at a time. Working on that!

[PMRpro Ambassador]

I don't think 2mg will help much - I see DL said 65, if that isn't enough try 70 but you MUST speak to your doctor, the GCA must be got under control with pred before the Actemra can be relied on.

Yes, you will be able to taper more quickly with Actemra than without but not until the Actemra kicks in and that is rarely immediately. It will work to some extent for everyone but for half of patients there are other underlying mechanisms for the inflammation that Actemra doesn't touch, it only works for IL-6, not T-cell or B-cell mediated inflammation. Most people manage to get down to10mg but half get stuck there and need some pred ongoing. A lot of rheumies seem blissfully unaware of that!

[Bummed24 in reply to PMRpro]

Such helpful information. Will work to get these symptoms under control. I took 65 mg. today, and will text my rheumatologist tomorrow.