GCA and steroid reduction

Hello, this I my first post but I have been following since July last year, thank you to everyone for your helpful comments.

I was diagnosed with GCA in July 2021 and started on 60mg of Pred. I am currently on 11mg and have been recently reducing by 1mg a fortnight. I’m experiencing side effects and horrid withdrawal symptoms and intend to suggest I continue on DSNS to see if that helps. Last time I said that the rheumatologist said it is too slow and I need to get off the steroids, as if I want to stay on them!

However, reading other people’s experiences I wonder if it is reasonable for her to think I could be off Pred in a year, seems unlikely given what most people say.

I would be grateful for any advice before I see the rheumatologist next week. Happy to give more information if required.

Thanks so much

[SnazzyD]

Here are some guidelines. See Table 2. By my reckoning it says that it’s potentially a year from 20mg (unless my arithmetic is off today), so from 60mg, that’s a bit speedy. I’d say that anyway from my own experience but thought I ought to give you something to give them. academic.oup.com/rheumatolo...

What are your side effects and withdrawal symptoms?

[Hidden in reply to SnazzyD]

Side effects which started when first onPred exhaustion, shortness of breath,dizziness,muscle pain, loss of taste/burning mouth, insomnia. All of which I still have apart from insomnia which has got a little better. Withdrawal symptoms headaches, temple pain, jaw ache, severe exhaustion.

[SnazzyD in reply to Hidden]

Do the withdrawal pains in jaw and temple go away ever?

[Hidden in reply to SnazzyD]

Yes sometimes but they are there most of the time at varying degrees

[SnazzyD in reply to Hidden]

Have you reported the jaw and temple pain to your rheumatologist?

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Good point -something she needs to be aware of…

[Hidden in reply to DorsetLady]

Yes it’s jaw ache rather than pain and temple pain seems to be part of headaches but will mention it again this week.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Please do …

[Hidden in reply to SnazzyD]

And I forgot, the dreaded moon face of course

[SnazzyD in reply to Hidden]

That’ll go, don’t worry. Have you ever done a low carb low salt diet with Pred? Helps a lot.

[Hidden in reply to SnazzyD]

No I haven’t but I think that’s something I need to try. Thank you

[SnazzyD in reply to Hidden]

Especially as a very low carb diet helps mitigate the blood sugar spikes caused by the Pred before you eat any carb at all and the low salt helps with fluid retention caused by Pred making you hold onto sodium. Docs do seem to assume high blood sugar and weight gain is inevitable with Pred, especially high doses, but it isn’t. Once you get below 7mg you may need to add a little carb and salt in if your adrenal function is low because you tend to get low blood glucose and low sodium. It’s a bit of a game, I can tell you!

[Hidden in reply to SnazzyD]

Must admit I’ve been thinking all this rubbish is enough without dieting, need to woman up and get on it!

[SnazzyD in reply to Hidden]

Try to think of it less as dieting but at avoidance of steroid induced diabetes and all the health risks of too much weight. I agree, it’s a pain. As if we need anything else to deal with….

[DorsetLady PMRGCAuk volunteer]

Definitely unreasonable to expect you to be off Pred as quickly as she thinks—for majority of people on here -nearer 3-4 years.

Not sure where she’s getting her information from -unless it’s Hans Christian Andersen or more likely Brothers Grimm!!

Not wonder you’ve had side effects and withdrawal symptoms -and yes a slower taper would help -but you need to enough all symptoms are under control first.

Have a look at these links -and maybe copy the GCA guidelines -as she obviously hasn’t read them

healthunlocked.com/pmrgcauk...

pmrgca.org.uk/wp-content/up...

[Hidden in reply to DorsetLady]

Thank you, I will go armed!

[Flivoless in reply to Hidden]

That's a wee bit extreme Cecelia. Will you get through security?

[DorsetLady PMRGCAuk volunteer in reply to Flivoless]

😉

[Hidden in reply to Flivoless]

🤫

[Sharitone in reply to DorsetLady]

I know where she's getting her information from - my rheumy! Same taper programme that I've been given. I am getting increasingly disobedient! (But then, I have got TZ as well)

[PMRpro Ambassador]

I wouldn't quite go as far as totally unlikely - but it would put you amongst a very small minority if you did.

I really wish I knew where rheumatologists got this idea from - because I know of no guideliness ever that would suggest that. EXCEPT the clinical trials for the use of tocilizumab alongside pred in newly disagnosed GCA where the pred reductions were over 6 and 12 months in the two cohorts. THAT can work. But not pred on its own.

And the lower you get - the slower you get, not faster.

[jinasc]

I would be looking for a new Rheumy, if she thinks GCA goes into remission within 2-3 years. That is cloud cuckoo land as far as I am concerned.

Yes, what PMR pro has said is correct. Two of the people I knew took part in those trials. Both were seen within 2 days of being diagnosed, both went into remission in just over the year.

[nallufl24]

I find these doctors amazing. I was diagnosed in July also. I’m down to 5 mg prednisone only because I’ve been getting infusions of Actemra. My rheumatologist feels I should have been off altogether now for the past 3 weeks but I just couldn’t get below 5 due to constant headaches. Yesterday I went to a vascular doctor for leg and foot welling. She also insisted I need to get off prednisone. No kidding! Do these doctors think I want to be on this? The doctors seem to think this is so easy. I would love to be all done with this soon but I agree after reading the stories on here it’s easier said than done

[PMRpro Ambassador in reply to nallufl24]

Are the headaches GCA-type?

Actemra only gets 50% of patients of pred entirely. There are 3 mechanisms that can created the inflammation in GCA and Actemra only works for one of them. If either or both of the others are involved then you continue to require some pred, usually in the region of 8-10mg/day, to manage that.

It is extremely clear from the clinical trials that this is the case and I am appalled that so many rheumies appear to be unaware of this fact.

[Hidden in reply to PMRpro]

My rheumy has mentioned both Tocilizumab and Leflunomide as possible help to reduce steroids but I have to say that as I am so sensitive to drugs I am inclined not to take them. If steroids are still required in some cases then I think I’ll try and continue reducing without.

[PMRpro Ambassador in reply to Hidden]

Absolutely no evidence that I know of that leflunomide helps in GCA. It may help in PMR although the side effects can be rather off-putting.

[Hidden in reply to PMRpro]

Thank you, it’s so good to have your help. Like most people, I imagine, I have little knowledge of GCA & steroids.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

you will learn....

[nallufl24 in reply to PMRpro]

I’m not getting headaches on 5 mg. I had them every day on 4. I don’t know if it was GCA. They weren’t severe but constantly there

[PMRpro Ambassador in reply to nallufl24]

LOW pred can also cause headaches if the adrenal function isn't keeping up with the speed of reduction of the pred dose. People often ask about cortisol production "kicking in" as it it were a speedy reaction to less pred. It isn't - it can take months to settle down and become reliable.

[nallufl24 in reply to PMRpro]

Thanks. It’s very possible that’s what it was. I just get so scared it might be GCA raring it’s ugly head again

[Rugger]

My Rheumatologist is a 'name' in the field of PMR & GCA - internationally. Even with Tocilizumab, she's had me reducing pred at 0.5mg per month. Better safe than sorry.

PMR diagnosed May 2016

GCA-LVV since November 2019

[PMRpro Ambassador in reply to Rugger]

Starting from what dose?

[Rugger in reply to PMRpro]

Sorry - from when I got down to 5mg - so 10 months to get to my last dose of pred 4 days ago..... fingers crossed. (At Ceceliafran's level, it was 1mg/month, but never 1mg per fortnight.) The TCZ 'ration' has run out, so she wants me to start on MTX - to be discussed next week..... I promise to do a post when I know what's been decided.

[PMRpro Ambassador in reply to Rugger]

I think TCZ is on the horizon for me - providing I pass the tests and Rome says yes. But I suspect there isn't the rather arbitrary time limit here. I have heard rumours NICE may be having a reconsider.

[Rugger in reply to PMRpro]

TCZ has suited me well and Covid has meant that I've been fortunate to have it for 2 years. We're not able to say that I'm in remission unless/until I relapse, hence the decision to try MTX for a year and see what happens - if it suits me, that is! I hope it might be helpful for you.

[Hidden in reply to Rugger]

Thanks, that’s interesting, I think I will suggest 0.5mg per month on the DSNS taper 🤞🏻she’ll agree

[Happyexplorer]

Sorry, I’ve entered this thread a bit late, but wanted to add my experience in case it helps a bit. My GCA started in March 2021 with the classic headache, sensitive scalp, progressing to inability to chew, tongue and jaw issues, finally diagnosed via an MRI in August and started on 60mg daily. By late October I was in despair, unable to reduce the prednisone as fast as the rheumy told me and laid low by the crippling fatigue and side effects of the prednisone/methotrexate combo. I stopped MTX & started Actemra in November (buying it on private script in desperation, as my CRP was just below the requirement for reimbursement on PBS /NHS) I immediately felt better in myself, (don't be afraid to try TCZ, I have had no side effects at all) but still found it hard to cut back on the prednisone without the jaw and tongue symptoms and temporal headache returning. At Christmas I took matters into my own hands following advice on this wonderful forum, increased the pred until I had no symptoms and then slowed down the tapering. (My Rheumy admitted she was using the TCZ clinical trial regime and agreed slower made sense).

I have read that ‘it’s easy to get down to 10mg Pred if on Actemra’. This is not my experience! I was stuck on 20mg for ages, then slowly got to 16mg and stalled again. I am now down to trying 11mg but got mild jaw and cheek symptoms especially at night, I also get stabbing eye pain but no probs with my vision, so I then go back up .5mg and try again afew days later. Despite low carb/sodium, my face and neck look like I have a donut addiction, my skin is so thin the slightest knock causes a cut and deep purple bruise and I find that very depressing, (altho I know it’s temporary and vanity shouldn’t matter to me at 75!) so I am especially keen to get below 10mg and am moving a bit faster than DL’s advice, but still carefully monitoring. I guess my take home message is have faith in your own instincts re the Pred dosage, using the guidance on this forum and read everything you can, as the experts on here advised me. It seems we are all different and it’s slow going, but just keep heading in the right direction for however long it takes!

Best of luck😊

[Hidden in reply to Happyexplorer]

Thank you Happyexplorer, great to hear your experience

[Happyexplorer]

Thanks Dad2Cue, interesting and helpful to hear your experience! My TCZ injections are weekly but the cost is prohibitive, really hoping I can get off both meds eventually and wish the same for you!