Advice please

[Sammo47]

I've been on pred for 2 years since being diagnosed with GCA . After some ups and downs had got down to 6.5 and already at very low energy when I was completely floored by a heavy cold. After a week in bed I decided to increase to 10mg (I live alone so was finding it impossible to cope). Another week on and my energy levels have improved somewhat but I'm not sure where to go from here. All my rheumy is interested in is reducing the pred, doesn't care about QOL and apparently I can't get a short syncathen test until I'm down to 5mg. At 75 I'd rather be on a maintenance dose and be able to function normally for part of the day than languish in bed all day. I'd welcome some advice ......

[PMRpro Ambassador]

Whatever he may think - if you were that unwell, you needed to adopt Sick Day Rules anyway and what you have done is about that.

There are rheumies like that - they have no real understanding of the disease and how it affects us. The only thing I can suggest is discuss it with your GP and see if they will help with standing up for you - though somehow, I doubt it. Or you could ask for a second opinion - which might take ages and not even be an option with the state the NHS is in at present. Or you could have a private consultation with a good rheumy - not just any, if you aren't careful a private one can be as bad as the one you have.

Where in the UK are you?

[Sammo47 in reply to PMRpro]

I'm in Falmouth, Cornwall

[Sammo47 in reply to PMRpro]

Do you think an endocrinologist could help? Since being on pred my inflammation levels have been normal so it seems to me that my problem is with the pred rather than the GCA

[PMRpro Ambassador in reply to Sammo47]

Your inflammation levels are normal BECAUSE you are on pred. That's what it does, mops up the inflammation. You need enough pred to manage the current level of inflammation. Take the pred away and at some point the inflammation will be more than the amount of pred you are on can deal with.

However, above about 7mg or thereabouts, the body knows there is enough corticosteroid in the body to manage daily needs for living and the HPA axis, the hypothalamus, pituitary, adrenal set up that usually produces cortisol doesn't stimulate the production of natural cortisol, it just makes use of the artificial stuff which performs a dual purpose. Roundabout 7mg, that does is a bit low for your needs but it is still too much for cortisol production to be triggered and you experience fatigue, especially if you try to do too much or you are ill. Normally the body produces extra cortisol if you are ill to fight off the infection. But being suppressed, the adrenals can't do it.

All you can do is to VERY SLOWLY taper the dose of pred - balancing the dose against how fatigued you are. An endocrinologist can't help - you can only keep slowly tapering and hope the adrenals wake up. The only thing that triggers production of cortisol is as low a level as possible in the blood at about midnight. @Snazzy has written very well about the problem. this dose is a pig, too low but too high.

It does help though if you have a doctor who actually understands the problems patients face - especially those of us who live alone and have to do everything ourselves.

[Sammo47 in reply to PMRpro]

I've got down to 6mg three times and each time I've become unable to cope, totally floored. Mentally as well as physically. Do you know of a good rheumy in Cornwall. I'm prepared to pay for good advice.

[DorsetLady PMRGCAuk volunteer in reply to Sammo47]

I think there’s a bit of a dearth of them in your part of the world. However it sounds as if main issue seems to be related to adrenals maybe have a look at this, and as PMRpro says time and a very slow taper is really the only thing to nudge those -

healthunlocked.com/pmrgcauk...

[Sammo47 in reply to DorsetLady]

I'm also trying to deal with probate etc following my partner's death before Christmas but was finding myself unable to do this once I dropped below 8 mg. So I'm not sure what to do about tapering down from 10. I think sick day rules suggest going back to the dose you were on before (6.5) but I don't think I can cope with that.

[PMRpro Ambassador in reply to Sammo47]

Then you NEED what you need. DL and I have both been there and it doesn't always hit you at the time. I was on a lot more than you when my husband died and I struggled. It was 6 months after his death that it hit me like a ton of bricks and I had a massive flare. Even now, 2 1/2 years later, anything official leaves me a trembling wreck for a while. If you are struggling below 8mg, then 8mg is what you need for now. It will improve, I'm managing on 6mg now and the wobbles are very few and far between. Don't let anyone bully you into going too low - it isn't worth it. It won't be for ever, it will get better. But it takes time while you are dealing with these things only you can do.

[DorsetLady PMRGCAuk volunteer in reply to Sammo47]

You are under a lot of stress then (many of us know about dealing with bereavement and all that that entails ).

As you are only 2years into your illness, then I’d say your GCA is still very much alive.. and personally, if you have enough Pred I’d be inclined to stay at 10mg for another couple of weeks -and then restart your tapering.

You might be able to drop to 8mg in one go now, (certainly not to 6.5mg) -but it’s probably a risk, and know what I’d do.

[Sammo47 in reply to DorsetLady]

Thanks for your advice, I'll take it slowly - hopefully my GP will give me adequate pred .... I'm curious though, having been a member of this forum for a year I understand that for many people it can take years to get over GCA. However a friend's husband got it four months before I did and was apparently clear of it and off the steroids in 16 months and has had no relapse. They find it hard to understand why I'm not recovered. Presumably we just all react differently to illnesses and medications?

[DorsetLady PMRGCAuk volunteer in reply to Sammo47]

Yes we do all react differently… and certainly with PMR there definitely are various manifestations.

Some men do seem to recover more quickly than females as well.. not all , but some so maybe he was just one of those lucky ones.

Plus it may also depend on how long it took to be diagnosed… the more entrenched the disease, maybe the longer it takes to recover.

The patients on this forum may also give a skewed picture, if you sail through your illness with no issues why would you need to be on here, and [apart from a few of us still about] why would hang around afterwards.

I had no issues with flares and very little with Pred per se - my issue was pre diagnosis involving sight loss. Once diagnosed and aware of GCA and finding the charity and this forum, which helped me a lot, I decided to stick around and return the favour… but many just want to put their illnesses behind them and move on.

[PMRpro Ambassador in reply to Sammo47]

Everyone is different - and although there are exceptions men are often out the other side faster than most women. I have female friends who were only on pred for just over 2 years for PMR and it tends to be more resistent than GCA. Indeed, I know of few longterm GCA-ers but a lot of PMR-ers who are into double figures of years. And he has had no relapse YET - he's been off pred for less than a year? GCA relapses less than PMR - but it can come back later and that is more common when the patient was off pred very quickly.

[Waverley63 in reply to DorsetLady]

Thanks DorsetLady, just read the link, it’s so kind of you to supply us with so much info. I know now what is to come. I’m starting 12mg now for a month, 1 day at a time. Feeling good at the moment, just learning to relax more.

[Birdfriend in reply to PMRpro]

Great advice. Seriously, my rheum has NEVER discussed my disease anywhere near the level of information I find here. I really don’t think she fully understands GCA😒

[Pippah45]

I have GCA and PMR something like 10 years in. I got really stuck on 7 for about 2 years. Thankfully I listen to these wonderful people and not the so called experts. Recently I have managed to get to 3.5. I like the saying "it's a marathon not a sprint!" My eyesight is too precious to mess with and QOL at 78 is important too. Did you read the book, the name escapes me but she mentions about the time it can take to reduce. Kate? Sorry I fell over my dog at the vets yesterday and have a golf ball on my forehead! Memory out of order! Good luck. Kate Gilbert.

[Sammo47 in reply to Pippah45]

Thanks, I'll try to get a copy of that book.

[DorsetLady PMRGCAuk volunteer in reply to Sammo47]

Amazon has paperback and e-versions...

[Chiqui1950]

Dear Sammo47,

I hope you are feeling better today. Yes, you are right1 recovery is slow and very emotionally and phisically exhausting---and I am learning to be compasionate with myself!. I was diagnosed with GCA in 2019 and I am almost 74 y.o. I think to be at 6mg in two years is great!! I am at 4 mg of Pred now after a number of trials and errors. Yes, it is hard that our body and our adrenals in particular have their very own rate of healing! I do wish it was faster--- but one day at a time I am learning that slow and steady goes far. I taper every 4 to 6 weeks depending on my ESR and CRP levels and my symptoms, trying to do it more often has not brought me good results. Also I have been tapering by 1/2 mg and may go to tapering by 1/4 mg. I follow the advice of my rheumy and that of the very knowledgeable and caring people on this forum. All the best one day at a time!!

[par600]

FYI: My GP believes that at our age - we will not die from pred side effects and that any

dosage below 10 mg is acceptable.