stress related relapse?

[CathyMeg]

Hi All. Down to 6mgs Pred for GCA/ PMR. was doing well with rest and exercise and then hubby had double bypass operation just over two weeks ago. Am now getting the odd sharp pain in the temples about once a day. Really sharp. Wondering if I should go back up to 10 mgs for a week or two. Really hate to do so but ???? Don’t want to get worse. What should I do?????

[DorsetLady PMRGCAuk volunteer]

Hi,

This link contains advice on dealing with a flare -but maybe back down to just above current dose.

Although hubby has now had his operation, he still has some time to go with recovery, so there will still be stressful times for you [mine had bypass in the 90s way before my GCA, but I remember it well]. Plus you are in the ‘adrenals needing to think about working’ zone - so you need to consider that as well.

Good luck to both of you….

healthunlocked.com/pmrgcauk...

[CathyMeg in reply to DorsetLady]

Oh dear. Thank you. Yes I will go back up then from 6-11mgs for ten days then back to 9 then 7. How I wish there was another way. Have you heard any info about cannabinoid oil for anti inflammatory. ? Just for future Hope ??

[DorsetLady PMRGCAuk volunteer in reply to CathyMeg]

cannabinoid oil

Do you mean to take orally or as an external ointment?

Not usually recommended to ingest as it can affect the way the Pred (and some other drugs) work -but sometimes it’s used topically for osteoarthritis etc…

Couple of links -

healthunlocked.com/pmrgcauk...

britishcannabis.org/cbd-gui...

[CathyMeg in reply to DorsetLady]

Thank you. Wonder if it could ever be used instead of Pred. Just dreaming of alternatives!!!!

[random901 in reply to CathyMeg]

CBA ointment or balm was soothing when I massaged it into my temples and lower eye socket. Taken orally it made no difference, and as DL says, could interfere with the pred

[DorsetLady PMRGCAuk volunteer in reply to CathyMeg]

Dream on… 😴.

[PMRpro Ambassador in reply to CathyMeg]

The general opinion of CBD oil has been it is not worth the cost for PMR/GCA itself but may be helpful for other things like sleep or anxiety. The trouble is none of it is standardised so you have no idea what dose you are working with.

[CathyMeg in reply to PMRpro]

Fingers crossed they find something with less side effects one day. Until then I will be grateful for Pred.

Thank you for your thoughts

[PMRpro Ambassador in reply to CathyMeg]

There are options - but they are extremely expensive and while they don't have the same side effects as pred they DO have side effects and some are potentially worse than pred. I keep saying to researchers - they need to work on optimum use of pred and teaching patients how to avoid the worst adverse effects of pred. Neither weight gain nor steroid-induced diabetes are inevitable. Their reckless reducing plans add to most patients' problems by inducing flares needing higher doses to manage. If you taper the way we back, many patients never have a flare but steadily but SLOWLY reduce the dose to very low levels.

But the idea of persuading patients to consider their diet doesn't appeal - everyone wants a pill for every ill. And too many pills together have a habit of fighting ...

[CathyMeg in reply to PMRpro]

Thank you and so happy you are in there advocating for more research. !! I’ve had no problem with weight or diabetes as I modified my diet as soon as diagnosed. But it is the bone loss brain fog sleep disturbance and mood that I hate. Keeping up meditation and exercise but still gets me. Still am grateful for the efficiency of Pred. Heaven knows how people coped before it. Thank you for this site. Has been a godsend. 😊🙏🙏

[Viveka]

It's not a big set back to do the flare protocol and then back to where you felt ok and given the stressful circumstances seems like a good idea.

However as you are only having the the odd stab once or so a day and presumably they are not getting worse(? )you could consider whether it could be what my consultant calls 'escape GCA' which means there is a bit of GCA breaking through the pred, but is not getting worse and is likely to settle.

Also, I wonder whether GCA can make the arteries more sensitive than they were before, so more inclined to feel GCA like symptoms when it could be pred level, withdrawal, adrenals or stress headaches.

Why not do a journal to get a good picture of your symptoms as you change your dose.

[CathyMeg in reply to Viveka]

Thank you for your perspective. Yes hopefully only for a few weeks to “empty a bit of inflammation from the bucket”. I have had the stabbings each day for about a week now and in the last two days wondered if there was a couple of fleeting moments of vision disturbance. This really freaked me so am on 11 mgs today.

I think the journal is a great idea and will start today and reaching back. Will call my new rheumy too. It am not too sure about her. She’s the one who confidently asserted that GCA was predominantly unilateral.

Thank you for your encouragement. 😊🙏

[PMRpro Ambassador in reply to CathyMeg]

" She’s the one who confidently asserted that GCA was predominantly unilateral."

Wonder how she accounts for the fact that if sight is lost in one eye, there is a 50/50 chance that sight will be lost in the contralateral eye within 2 weeks?

[CathyMeg in reply to PMRpro]

Yes! I did gently query her assertion referring to recent review of literature in Oxford journal clearly stating is most often bilateral. She took it well. Otherwise would have been looking for another but still makes me cautious. I can’t stress enough how wonderful this site has been

My heartfelt thanks to you and others who must put so much time and effort into this.

[Allotmental]

You have my sincere sympathy. We are four weeks from my 55 year old husband waking up with a heart attack and being rushed into Papworth and then readmitted to our local hospital the following week via a & e for further surgery.

I have been managing at 3mg for some time now and can’t get below this. In the first few days I did consider increasing because I could feel the adverse impact that the stress was having, but it seems to have calmed down now.

We are all very individual so be led by your knowledge of your own body - and good luck to you both x

[PMRpro Ambassador in reply to Allotmental]

Don't try to taper any further until your husband is fully recovered and life is back to normal. If anything, you might need a bit MORE and you seem to realise that. Caring for a poorly spouse and the world of unknowing that goes with it needs support. People help if you are lucky but so does a bit more corticosteroid because your body NEEDS it to function at all levels and especially when you are under stress.

[CathyMeg in reply to Allotmental]

Thank you and my sincere sympathy to you too. Not easy suddenly taking on all their household chores plus being nurse and support. My hubby starts his rehab today which I believe includes mental health awareness. Necessary for us too. Hope your adrenals can cope or have a little extra support too. So many people have reassured me how successful heart surgery is in the long term. We will come through this ❤️❤️