Do I have to go up to 60mg pred again?

[nallufl24]

I started with 60 mg pred in July 2021. Even though I had many side effects from steroids, I did not have any more symptoms of GCA until I tapered to 10. I then started to get headaches again and sed rate and CRP was a little elevated. Doc told me to go back up to 15. Headaches still didn’t go away. Doc then said to up it to 40. The first two days I felt wonderful. No headaches, had energy and was happy for the first time in 4 months. Then suddenly the headaches were back and so were all the side effects of pred. Depression, shakiness, high glucose, high blood pressure etc.

I know I have to call Doc back but I can’t bear going any higher on pred. I’ve been on 40 mg for 7 days now.

Any thoughts?

[Nextoneplease]

Hi nallufl 😊

I hear your pain but unfortunately I think - as you do - that you must seek medical advice urgently. Be prepared to increase pred if necessary - it won’t be forever and it could save your sight.

Please look after yourself 😊

Sorry, have to dash but will be thinking of you xx

[SnazzyD]

Poor you. Sadly, you may have to increase and soon. It is unfortunate that you were reduced to 10mg in what sounds like about 3 months which is quite some speed. The first year of GCA is the riskiest time for flaring. It was 10 months before I got to 10mg without any complications. You may need a slower taper or the consultant might suggest you start a biologic like Actemra as well. Going back up to high doses is most people’s nightmare. Did you go on a super low carbohydrate diet last time? It controls the blood sugars and the weight and is tried and tested by many on this forum including me. Doesn’t help too much with the moon face though. Also, very low salt while on moderate to high doses stops the fluid bloat and some of the puffy face.

Hang in there.

[DorsetLady PMRGCAuk volunteer]

Certainly a possibility, if 40mg hasn't worked within the 7 days you've been on it.

As others have said, much too fast a reduction first time around, so you need to take it slower this time around. I know it's not what you wanted, but you have to remember your sight is at risk if your GCA isn't properly controlled. ..and that's a lifelong issue, not short term like Pred side effects.

Take it from one that knows.

[HappyDiamonds]

I had exactly the same thing happen to me at 10 and found that I had more side effects from Pred when I had to go back up than I had when I was on the same dose to start. I know exactly how you feel, none of us want to start all over again but you can't be to careful with GCA. Hope things goes well for you and improve soon, chin up.

[nallufl24]

Thanks again. I know what I have to do. It just seems overwhelming right now

[DorsetLady PMRGCAuk volunteer in reply to nallufl24]

Yes it is….but needs must I afraid. Take care 🌸

[Viveka]

So sorry to hear this, my heart goes out to you. Although it is overwhelming, it will pass and things will get better. DL shows how people can come down from large doses and be fine. I would echo what we have said in the past, that this is likely to be due to too fast tapering. Our individual circumstances inform our taper rate, but the national guidelines for tapering which are far slower than what you have experienced, and I would really query why your team have not been referring to these.

[nallufl24 in reply to Viveka]

I am happy to have found this support group. Even though my rheumatologist and regular doctor here in Pittsburgh PA, USA are supposedly very good, no one really told me about the reality of this illness. Everything I’ve learned I found out online. I was never made to believe that this could be something that lasts years. I really thought that once I got it under control, then tapered, I would be fine which would maybe take 6 months. I’m now starting to face reality.I often hear about some of you traveling and that makes me feel good. My son is in the military based in Naples, Italy right now. I have not seen him in 2 years because of COVID and now my illness and of course COVID is still here. You have given me hope that maybe some day I can visit him there. He still has 2 more years in Italy.

Thanks for the hope

[DorsetLady PMRGCAuk volunteer in reply to nallufl24]

I travelled from UK to New Zealand solo with GCA, albeit it down to single figures of Pred... so it's very doable.

Rheumies/doctors don't understand the nuances of PMR/GCA/Pred - and you can't expect them to, even though we hope they know more than they do...the only people who fully understand are going or gone through it!

Real life is not the same as what the books say!

[PMRpro Ambassador in reply to nallufl24]

I "only" have PMR but have had it a long time - during the 16+ years of PMR, 12+ years on pred and rarely below 10mg I have travelled all over the world - you just have to think ahead and plan the journeys a bit differently.

[nallufl24 in reply to PMRpro]

Thanks. That gives me hope

[Rajuguide]

Same pattern exactly with my wife , she was advice to go to 40 mg from 12.5 ! Confuse like you , what to do .