GCA flare dosage

[potterylady]

Hello, I'm back with another question. I've had GCA and PMR for 10 months, on Actemra and was down to 9mg prednisone. When I went from 9 to 8.5mg I had a major flare and went up to 15mg. The flare continued and Rheumatologist said go to 20mg, maybe 25mg. After 2 and a half weeks on 20mg I thought I started to stabilize. Tried going to 18.5mg and the headaches, temple pain, jaw pain all came back.

What is a "normal" GCA flare dosage and reduction? Should I just stay at 20mg for an extended amount of time? I have such low energy, plus jaw pain, temple tightness, tinnitus even on 20mg. I was hoping to get back down to 9mg after the flare, but I'm not sure I don't need 25mg at this point.

I'd love your thoughts. As always, I'm very grateful for your help.

[DorsetLady PMRGCAuk volunteer]

Not sure there is a ‘normal’ GCA flare and dosage - but without stating the obvious if 20mg for over 2 weeks wasn’t enough then you probably do need more.

As the Rheumy suggested 20 or 25mg - then I would go to 25mg and see if that is enough….and hope you don’t require longer than a couple of weeks to be sure. If you do, then you and Rheumy will need to review situation.

But to be down to 9mg [albeit with Actemra] within 10 months is probably telling you too low, too quickly.

[potterylady in reply to DorsetLady]

Last night my head felt like it was going to explode. I'll take 25mg today and see if that works. I suppose I may even need more. Yes, I was too ambitious getting to 9mg. My Rheumy wanted me to go down quickly. I went slower than she said, but when I got to 8.5mg I was a mess. That started the whole merry go round.

[PMRpro Ambassador]

Although the clinical trials support that speed of tapering when on Actemra there were flares during the trials PLUS only half of GCA patients were able to get off pred altogether, There are 3 mechanisms creating the inflammation in GCA, only one of them, the IL-6 component, is responsive to Actemra. If your GCA includes the other two, then you continue to need pred to manage the inflammation they cause. GCA is very prone to flaring good and proper in the first 18 months and there is no way you can tell how much of the pred-requiring mechanism is involved. And how much you need to manage such a flare becomes an empirical process - how long is a piece of string?

How fast did you taper the dose?

[potterylady in reply to PMRpro]

I was tapering very slowly until my Rheumy said to taper more quickly. When I went from 9mg to 8.5mg, I was a mess. I think I went into the adrenal danger zone--never want to experience that again. So, yes I went too fast, especially at the lower doses. I don't know what came over me. I got so excited to be getting down to a lower dose and felt fine, until I didn't. I could hardly even move or think or talk. Lesson learned. I'll take 25mg today and if I'm still not ok, I'll go higher. The disease is still very active! My head feels so swollen and sore and throbbing.

Also, you were right about the side effects of Red Yeast cholesterol supplements. I can't take them! I tried it for 2 days and was so dizzy! Thank you for your great info as always.

[PMRpro Ambassador in reply to potterylady]

Read my reply above carefully - you may be one of the 50% who need some pred to prevent a flare of the the other reasons for GCA inflammation.

[potterylady in reply to PMRpro]

Yes, I read it carefully and know you’ve explained it before, which is helpful for me. I am probably one who will need prednisone for as long as I have this. The Actemra helps a lot because the day before I’m due for my shot, my symptoms are bad! I took 25mg, plus my shot and am doing a good step better today. I was so reluctant to go higher on the dose but I really needed it. Last night my head felt like it was going to explode. If the headaches don’t stop, I’ll go higher. Today after the shot and 25mg no headache so far. Thank you for your help and support ❤️

[Janettechud]

I am in a different position to you as the specialists are unable to diagnose what I have but it did start with a diagnosis of PMR. I am responding to let you know that I am unable to taper and as a result, I have been at 20 - 25 mg day of Prednisone plus Methotrexate for 16 months now. I have not suffered any bone loss (I take a bone protector Allendronite) and lots of calcium ... and I have not developed diabetes. I like you get headaches and the jaw pain but only occasionaly , and there is some umming and aahing about GCA ... in which case I boot up immediately to 50 mg. My doctors (four of them now) insist that I must let pain be my guide. Specifically, if it hurts, take more steroids. It is very unsettling to not know what is wrong with me, but my advice to you is take more prednisone. Get yourself in a comfortable state ... for some of us this journey is unpleasantly unpredictable. For me, whatever it is I have has impacted my ability to breath which is in many ways, worse than the pain. I can control the pain but no breath surely slows me down.

I wish you some freedom from pain and I hope this viewpoint helps.

[PMRpro Ambassador in reply to Janettechud]

Is it the disorder that affects the breathing or is it the medication? Both pred and methotrexate can affect breathing.

[potterylady in reply to Janettechud]

Thank you for writing. 20-25mg for 16 months plus Methotrexate sounds pretty solid. I'm sorry you're having trouble breathing. That's horrible. I have some trouble too, but not too bad yet. I get winded and tired fast with movement. I hope your health improves too.

[Janettechud]

all the symptoms came together in Nov 2021. However all the medications seem to also have known side effects. My “PMR” was never classic. Just in my hips, lower back and buttocks - I asked my other group in USA if anyone had symptoms like mine … one lady described same situation … she can’t taper either and her doctors use the same words as mine … “this is not garden variety PMR”. I am 73 and really don’t need all this attention but I think I’m getting the best medical treatment anyone could ask for … I’m a Brit now living in canada and Canadian. Wud be marvellous to get a few more clues? The Docs are fairly sure they have not missed a life threatening disease.

[PMRpro Ambassador in reply to Janettechud]

I fear there is no "garden variety PMR" - there are at least 4 if not 5 different versions and only one might be gone in 2 years. The majority of us are Special ...

[Janettechud in reply to PMRpro]

do you know where I cud get descriptions of the 4/5 that are known?

[PMRpro Ambassador in reply to Janettechud]

No - still very much theories on the part of a research group and observations on the forums over the last 12 years ..

[Janettechud in reply to PMRpro]

do you know if there is info on the breathing issues? My lungs just shut down … hardly any ability to breath in

[PMRpro Ambassador in reply to Janettechud]

pubmed.ncbi.nlm.nih.gov/216...

is a paper about pred-induced breathing problems.

Methotrexate can affect lungs and any rheumatologist should know that a patient with breathing difficulties on methotrexate needs to be investigated.

pubmed.ncbi.nlm.nih.gov/936....

Have you at least had a chest x-ray?

[Strelitzia]

Hi PL

If your head feels like it is going to explode ( very reminiscent!) then it sounds like you need to go back to the beginning, as the effects of the GCA flare can be huge. A Prednisone dose that gets rid of the pain, 30mg? Get to the point of no pain, and then begin the slow taper again. Looking back at my notes, I am nearly two years away from the exploding head days. I have resisted the first rheumatologist’s advice to reduce to zero, and have taken the advice of the new rheumy to have “no pain” as my goal. I am on the second year of Actemra, as apparently the GCA can rear up again. I reduce the pred by quarters, with the occasional backing up when there is stress or a hint of pain. This is a slow process. Interesting that you have tinnitus, as I do too. I have the occasional day when it is silent, and it is weird not to have the constant head noise, which is still better than that awful GCA pain! Positive thoughts! This will end one day!!??

[potterylady]

Hi Strelitzia,

It's so comforting to hear your similar past situation. I'm glad you're two years away from the terrible head pain! What is your current dose now, after two years plus Actemra? And yes, if the head exploding continues I'll try 30mg. 25mg seems to be helping for now. I just have so little energy and my muscles are so weak. It's so hard to not feel anything like my old self. I need those positive thoughts, but I'm really grieving my past healthy body.

[Grammy80]

Hi, I just saw this. I was diagnosed with GCA in 2019, August, by October I was on 80mg of methylprednisolone along with weekly injections of Actemra. Today I am on 3mg along with my TCZ. My journey with pred dosage was up and down and up and down; 80, 60, 40, 60....finally got to 15 about a year an a half ago and then boom, back to 40. I got stuck at fifteen until spring of this year and the .5mg at a time I got to 3mg. I'm staying here for a few months and then I'll try again. It has been a three year journey....give yourself a break and don't be anxious and possibly do harm. It is up and down....but there is an end.💞

[potterylady in reply to Grammy80]

Grammy80, thank you so much for your response. It's good to hear your dosages. It really helps. You got down to 15 then back to 40, sounds like me. It's fantastic that you then went from 15 to 3mg currently. Do you think perhaps the GCA has run it's course? It would be a dream if the GCA was over in 3 years total, I've had it for a year now. I would still have PMR but it's not as scary as GCA! I'm trying to stay at 25mg for now, after my flare, but my head is still super tight in the evenings. Thank you for saying to give myself a break and don't be anxious--I needed to hear that. Also that there is an end to this. Thank you so much!!! xo

[Grammy80 in reply to potterylady]

😉Yes, there is an end and I'm not sure this is the end for me. It meant the world to me to 'talk' to folks on the forum and find out that I would survive. Like so many, I was experiencing so many new and strange things....it was great to know it was in the normal course of things. One of the kindest things I did for myself...was accept, keep my positive spirit, but accept that right now I wasn't in control. It is a journey for sure but we will all make it...just be kind to yourself~!💞