GCA Flare - how much to increase Prednisone?

[Michgardner]

I have been living with GCA, PMR and fibromyalgia for 2 years now. Started with the high dose of Prednisone. My blood work and pain levels did not react, so in May 2018 I was put on Methotrexate for four months without relief. Changed to the bi-weekly injection of Actemera in Sept 2018 and my numbers went to normal levels and pain was very manageable. I was on 20 mg Prednisone at this time. During this entire time, I was doing a slow decrease of the Prednisone. Two month ago I was told to taper from 7.5 mg to 5 mg during the next 3 months before my return visit. I started using the chart that is on this blog to do the slow reduction, splitting my 2.5mg tablets in half, so first step was going to 6.25 mg. Well ever since I started that, I have missed 2 days of work every week in the last two months and the pain has been getting gradually worse and cannot deny this is a flare. Called my rheumatologist to see what level Prednisone I should increase to with the flare. Was advised he is out of the country for six weeks and if I have any issues to go to the emergency room. I am not willing to do that, my insurance would still make me pay $2000 for the visit, not going to happen. So here I am, my head is busting like a tight cap or vice is on it and it is prickling, my jaw is sensitive along with my stomach, I get hot flashes galore, I have total exhaustion and my eye swell shut on the worse days. So whats a girl to do? I am 63 and I really want to get off the prednisone but I do know that it is time for a short increase. Any recommendations for where I should go with my prednisone levels? Thanks in advance for any advise

[PMRpro Ambassador]

Even Actemra doesn't guarantee you will get off pred altogether - in the clinical trials that became very clear and any doctor who has read the trial reports should know that and tell their patients up front. Something under half get off pred, something under half get to a lower dose of pred and some don't get anywhere.

You obviously need to go back tthe last dose where you felt good. The usual expert advice in a flare where you have overshot the dose you need is to add 5 mg to the dose where the flare happened. Under the circumstances that is where you should probably start and see how you get on.

I can only ask what sort of doctor goes away for 6 weeks and just abandons their patients? Ours must have a locum for emergencies - and even rheumatology patients can have problems that don't belong in the ER.

[Michgardner in reply to PMRpro]

I appreciate the response. I will take it up to 10 mg and go from there. Thank goodness we have this forum to rely on. I will follow up with my internist as well since I now know it will be six weeks before rheumatologist is back. Thanks again.

[Christophene in reply to Michgardner]

PS I should say some ER docs are very good. One diagnosed my grandmother's PMR in the ER and was very concerned about vision b/c she was already blind in one eye from a childhood accident. She weathered it well; I am not sure how long she was on Preds, but she did recover and lived until 92. She was about 71 or 72 when diagnosed.

[Christophene]

Sorry, Michgardener, that you are going through the dragon of tapering.

Flares always seem to happen with tapering., Take the dose where you felt the most comfortable and able to function normally for you.

Sometimes, you need to be your own doctor, and until he or she is in your shoes, do what you think is right for you, not what your doctor thinks is right for you. You are the boss of your own body.

I have had PMR for 3 years; last month I switched from oral Pred to injectable depotmethylprednisisolone every 3 weeks. It doesn't quite hold me the whole 3weeks, so I take 3 mg extra every day which equals 8mg day with my doctor's approval.

6.5 mg is not enough as you describe things, especially with GÇA . Go as high as you have to to feel well and safe with the GÇA. I don't blame you for not going to the ER. They don't know you, or will likely not listen well to your history. And for $2500.

With the symptoms you describe, your GCA is acting up; your scalp and jaw symptoms indicate that. Don't try to be a good girl to please your doctor.

Be your own guide. No doctor should go off on holiday for 6 weeks and before leaving, tells you where he expects you to be when he returns.

Do go to ER with any visual issues b/c sight is worth $2500.. Hope this helps. Hope he gave you enough Pred to last.

Let us know how you do?

[suzy1959]

Although you say you have followed the dead slow tapering plan, if you were going from 7.5 to 6.25, that can be too large a drop for a lot of us. Next time, it might be worth trying .5 or at the most a 1 mg drop. The advice is not to drop more than 10% which would actually be .75! Our bodies are mostly very sensitive to tapers so we have to deceive them into not realising that is what we are doing!

I hope you get past this flare and are able to taper again soon. Can you get hold of 1mg tablets? That would make it a whole lot easier!

[Michgardner]

Thanks everyone, really appreciate the help. I Increased to 12 mg today, hope I get relief soon. At least we have this forum to know we are not alone. Most people say they understand but you know they don’t really get. You all get it, and for that I am thankful.

[Pookiesherlock]

I have COPD with CHF and I know when my chest tightens and my throat closes I need to be on Prednisone. I usually start 40mg then titre down to 5mg within 10 days. I just finished the latest round and my breathing is still labored and my oxygen is low. I want to see my pulmonologist but the powers that be suggest having an appointment with a physician's assistant. I am so tired of having to explain to every new person, whether it's in the doctor's office or the ER, what I am going through, what meds I'm on, what I do at home to control my symptoms. I'm sure you experience the same thing. Plus, the last time I saw someone different the doc told me I didn't wasn't having a COPD flare-up but a severe asthmatic reaction. Duh! Potato..Potahto! The fact is I can't breathe! I went from swimming 3 days a week and very active to confined to my apartment on oxygen 24/7. This has been going on for three months. It started after a month of confinement in a nursing home due to a fall off my scooter where I broke my arm and dislocated my shoulder. But I could breathe! Then I got an abcessed tooth pulled and the fun began. Infection throughout my body and worsening of my chronic condition. I am next going for cardio and esophageal evaluation (possible thyroid problem). This has been a 10 year battle for me and I am frustrated. I didn't know the medications to help me breathe would effect my teeth (and bones), my heart and my liver. It also effects my thyroid (I have diabetes II) and my counts skyrocket when I take Prednisone. I'm so sorry you are going through these crazy ups and downs but stay strong. We do have each other and we need to keep the doctors informed. I am going back to Pulmonary Therapy (exercise program) and my goal is to go back to swimming. Then I want to go kayaking! Want to go with me?

[Michgardner]

Kayaking sounds great, heck sitting through a pontoon boat ride would make me happy. For now, I would just like to have one normal day. The last 2 years have had their ups and downs. I am with you on explaining it over and over. Every doctor looks at their one specialty and have their own methods and opinions for treatment. Then we still have to put all the pieces back together. I just take it one day at a time, it all I can do. Good luck to you!

[Brubeck]

I'm sorry to hear you're having problems while your Rheumy is away. I was interested to read your symptoms, particularly in your scalp. I, too, have GCA (since Feb., 2018) and sometimes get that feeling that I'm wearing a tight rubber bathing cap. My scalp gets tingly (or prickling) and on rare occasions experience what I call a pulsing nerve zaps... brief sharp pains that travel the path of an artery. If I feel my scalp with my fingers, I can locate sore spots. The appearance of these symptoms indicate a flare to me. A severe version of these symptoms led to my original GCA diagnosis so I'm on alert when they reappear. Oddly, a Rheumy I began seeing recently doesn't see scalp pain as an "indicator" of a GCA flare. He told me I had a stress headache. (Never mind that I'd been having chills up my spine and night sweats, and feeling lousy in general and my inflammation markers are up.) I will not go back to him. He gives me stress headaches! I think you've been given some good advice on this forum. You may have decreased the prednisone too quickly or you're having a flare and need to back up a bit. The disease is going to do what it's going to do. We can't cure it...merely do our best to keep it from rearing its ugly head. Best of luck to you.

[Michgardner]

I can really identify with your symptoms, that is exactly how I got. This is day 2 with the 5 mg increase and my head is getting better. The hot flashes and sweats are something else. Only we know the bodily impact we go through and we are not all textbook. So we have to sometimes take matters into our own hands. Luckily I have plenty of pred to get through this.

Good luck to you, looks like we both have to find the right rheumatologist who knows GCA.