GCA or prednisone?

[Mstiles]

Hello everyone,

I had previously posted about trying to sort out what was going on with me, as I had earlier been diagnosed with Graves’ disease last summer, and then PMR/GCA beginning of January this year, 2018 and put on 40 mg prednisone. I didn’t have visual symptoms, but had the headache and the rest. The hyper thyroid symptoms felt like some of the GCA etc symptoms.

The rheumy wanted me to reduce after bloods were normal at 2 weeks to 30, didn’t work, confusing symptoms, back to 40. Tried to reduce to 35, same thing, ended up increasing to 45 because of more pain. Meanwhile ruled out Graves as these tests are now in range.

During all this had trouble getting in touch with my rheumy and getting feedback about what was going on with my symptoms.

I finally had an appt. with him last week after 6 weeks. I was at 42.5 when I saw him. I had raised the dose. Sed rate and CPR in range now. He felt the symptoms were from the pred, since I’m not big, 128 lbs, 40 is a fairly big dose, So he told me to go back to 40, which I did, then in two weeks to have bloods taken again, and then go to 30 and stay there for a month until our next appointment in beginning of April.

He’s put in a standing order for bloods every two weeks, but no more instructions about tapering. I’ve already been on the 40 for 2 months without successfully reducing any. I know everyone is different but is this usual? From posts here it seems pred is reduced in bigger jumps from the high doses, and then from 10 on down very slowly?

Can I get your thoughts on proceeding forward and tapering down? The nights are still pretty rough with maybe 5!hours of interrupted sleep, pounding heart, numerous trips to the bathroom, yadda yadda...the usual pains. The pred is doing its usual ruining of face and my hair. But only twinges of head pain, a little jaw soreness, but not like before diagnosis.

I feel like I’m not getting anywhere.

Any comments appreciated!

[northwesterner]

I went from 80 to 60 to 40 to 20 within a month but then to 15 for two weeks the 12.5 then 10 and REALLY slow going after that. I too have standing orders for Sed rate and CRP every 4 weeks. After four years I am finally down to 4mg. I have learned to listen to my body and realize when the headaches, neck and shoulder pain and all that act up I can pretty much guarantee that I will be out of norm ranges and so then I have had to increase a bit then start the taper down again. I have learned that I can split my dose take some in the morning and some in the evening and that helps with my pain.

[Mstiles in reply to northwesterner]

Thanks Northwesternerbb Wow you went from 80 to 20 in a month without a GCA flare? Or am I reading that wrong.

I think I might try splitting my dose and see if that helps my nighttime problems I’ve been taking all the pred after breakfast

[northwesterner in reply to Mstiles]

It was a very fast reduction from what I know now but I was lucky to not have an issue with it

[SnazzyD]

Hello, how vexing for you. My take on the lower inflammatory markers is, I should think so too, because it just means that the Pred is holding the inflammation at bay which is what is required. It does not mean the condition is resolved and a quick withdrawal is ok. I was on 40mg (I’m not big either) for 6 weeks and 10mg was always too much, so I only dropped by 5 or 2.5mg at the higher doses and 0.5mg at lower doses. A 10mg drop from 40mg brought my symptoms back, but at a much lower level. I never had any raised markers to go by anyway and ended up following the guidelines but very roughly and much slower than suggested because I suffered from rough withdrawal too. The only time I get headaches is my withdrawal headache on day 3/4 that lasts for 1 or 2 days which feels like a normal headache in the brain. I have never had one as a side effect of Pred. I also get aches and pains, fatigue and jaw pain but not claudiation but they only last for a few days. I’ve never split my dose because that isn’t recommended for GCA and I take enteric coated Pred but at least 2 hours before a meal because I found it affected absorption. Others may have a different experiences.

[Mstiles in reply to SnazzyD]

Thanks for sharing your experience with me. I hope I can get more familiar and see some type of pattern for the “withdrawal versus flare” symptoms as I taper down. Lucky you no prednisone symptoms!

[SnazzyD in reply to Mstiles]

Oh no, I had the full Monty of Pred symptoms, I just didn’t mention it.

[DorsetLady PMRGCAuk volunteer]

Hi,

Agree with SnazzyD about the markers, they should be under control if the Pred is working,plus they sometimes lag behind the symptoms, so as we always say ‘symptoms are the key”. But it is a good idea to have them done regularly then you can see if there is an upward trend.

40mg is not a high starting dose in relation to GCA, in fact it’s the lowest recommended, and I would say if you didn’t get significant relief then either

- the dose is not big enough, you are not getting the full benefit of the dose (most get 90% absorption rate but some get as low as 50%), or you are trying to do too much.

All the problems related to Pred are unfortunate, but they will eventually go.

Personally I think your Rheumy suggestion of reducing from 40mg to 30mg in one step is asking for trouble particularly with your previous history. That’s 25% drop, and a 10% reduction is the recommended way forward.

See what your next blood results are - they may well have risen in line with your symptoms - if so, then to reduce would be foolish. If they are still okay, then I’d try a 2.5mg for a couple of weeks, and then if okay another 2.5mg.

[Mstiles in reply to DorsetLady]

Thanks Dorset Lady. Yes that seems like too big a jump to me. I did get significant relief from the headache I was having when diagnosed on the 40 mg, but confusion over symptoms when I tried to reduce.

MDoing too much...,I started making daily notes and seems like emotional conflicts or even going somewhere like grocery shopping! can cause problems and I seem to need a day after to do basically nothing.

[SnazzyD in reply to Mstiles]

Yup, that’s sounds about right. For at least the first 4 months I could hoover one room and that was it. No thinking possible either.

[PMRpro Ambassador in reply to SnazzyD]

A whole room?

[DorsetLady PMRGCAuk volunteer in reply to Mstiles]

Yes absolutely- emotional conflicts and physical activities don’t mix too well with GCA and/or PMR.

[bunnymom in reply to Mstiles]

We must do a lot of thinking at the store as I find it very taxing as well. I only go one place a day. Comparison shopping over loads me and since pmr I pay more. Also I don't go on high traffic days if possible. Can't take the confusion and noise.

[Mstiles in reply to bunnymom]

So true. That’s me exactly. 💕

[christine2715]

I agree with everyone. I wasted so much time trying to reduce rapidly and now find that I can only go down 1/2 mg at a time. When you are on a high dose I think 2 1/2 mg reduction per week is best. I also found that taking some of my dose around 4 pm helped with the poor sleep and also amitriptylene - a mild but tried and trusted sleeping pill which also works for mild depression. I have GCA and was told by my consultant it was ok to split the dose. I have now made an amazing recovery since taking Actemra (tocilizumab) but it is hard to get it on the NHS.

[Mstiles in reply to christine2715]

Thanks Christine,

Did you reduce 2.5 one week and then the very next week go down another 2.5 more, etc?

Glad Actemra helped you! My rheumy hasn’t mentioned it, I’m in the US so it might be more available here. I’ll see how things go. Really don’t think I want another drug but keeping an open mind.

[PMRpro Ambassador]

Nothing for me to add - except to underline DL's comment that 40mg is the bottom end of the GCA dose range so it isn't a particularly big dose however small you are.

I know the side effects are horrible - but none of them is worse than the ultimate GCA side effect.

I also wouldn't reduce as fast as 2.5mg per week - if it does go pear-shaped you won't know where it was at that speed. 5mg per 2 weeks might be better - but I would do 2.5mg per 2 weeks would be my choice.