GCA/PMR

A curious question.

Do you regulate how much prednisone you take?

My rheumatologist tells me how much to take. Don't think he would want me regulating the amount of prednisone.

I see him every 4 weeks & every time I go he does lots of lab work. 

The fatigue is  driving me crazy.

Darlene, i regulate my pred up to a point. I've had GCA for over 3 years now and before that, PMR for 4 years. If I were to follow my rheumatologist's recommendation, I would be flaring constantly, as she wants me off pred as quickly as possible. Luckily, we have come to an understanding that I want to take things slower than textbook tapering. We still discuss my dose and blood markers of course. My GP is also now quite involved, as I'm currently having bloods done at my surgery every 2-4 weeks. She knows little about GCA, but is very supportive.

I think, when you've had GCA for a few years, you learn to taper up or down. I'm not talking about huge increases when flaring, I let the professionals decide, but small adjustments.

Yes, the fatigue is overwhelming and it really limits what I'm able to do.

You are in the US I assume - it would be next to impossible for most of us to see a rheumy every 4 weeks, especially in the UK! 

As Susanne says, many of us who have had PMR/GCA for a long time have come to an agreement with our doctors about minor adjustments rather than have to wait for an appointment and risk a flare developing. 

In the U.K. it is hard enough to see our GPs every four weeks as it takes that long to get an appointment nowadays. Three months seems to be average to see a rheumie at the moment. My rheumie cancelled in December fifteen minutes before I left the house to go to the hospital and then I was given the new appointment seven weeks later. 

Suppose you have to be grateful it was 15 mins before leaving the house and not 15 mins after...

Even here it has been months to get a "rheumie" appointment in the rehab department but we now have a tiny real regional rheumatology department and my first appointment with the Head was only several weeks I think. Then they rang the week before to say sorry, he'd to work nights and the appointment would have to be delayed. Would I mind an appointment with an Italian-speaking... ? I refused - the only reason I was going was to meet the new guy who has his name all over PMR/GCA publications at present   I only had to wait about 10 days though. It was worth it - haven't enjoyed a medical appointment so much for ages!!! Established all the people in the UK we both know and discussed a LOT!

I must admit I did thank my lucky stars I had not left home and then fought for a parking place at the hospital with exorbitant charges! My current rheumie is a bit of a waste of space anyway. Totally unproactive. I am not sure she knows much about PMR. 

On the basis of a first meeting I'm pretty impressed by Dejaco - we'll see how we get on. 

Now our hospital is reachable by train: a 5 min walk to the station and get off after 7 mins actually IN the hospital! No need to find a parking space - and if you were further from the station you would park there and catch the train. We have an annual 150 euro 65+ "go anywhere on public transport in South Tirol" - and we are getting our money's worth!! And OH has an appointment next Wednesday in the next hospital down the valley - bus every half hour from the same station to the hospital door in 45 mins. Or take the train and get a bus to the hospital - but that is more complicated. Can't beat it!!!!

I suppose I am really blessed.

I live in South Carolina, U.S.A.

As I said previously I see my rhumey every 4 weeks.

However, (MUSC) University Hospital has a patient portal where I can write to my doctor with questions about meds or anything & I get a response from the nurse within 2 days, so I do write him with questions like this is happening & what should I be doing about it.

I really do like my doctor & I think that makes such a difference in dealing with all of this.

Wish all of you could get into your doctor sooner.

Guess that's why you have learned to go up or down with the prednisone. 

"Guess that's why you have learned to go up or down with the prednisone."

Yup!!!!! Self-help!!!!!

I think it depends on where you're at in your GCA/PMR journey, and perhaps also where you are based in the UK, as to how often you get to see your rheumy.

I'm happy with my rheumy. We have a good relationship. I can leave a message with her secretary and she will call me back if I have any concerns. She also sends updates to my GP after each visit.

Thank you for your quick response.

I will tell my rheumy on Monday.

I think his concern & possibly the reduction with the prednisone was because my face ballooned something awful. I could glance looking down & all I could see was my cheeks. My

face was really big.

I see my rheumy once a month.

I appreciate being a part of this forum because the feedback is so helpful.

You might find the face ballooning would be helped by cutting carbs and salt in your diet - lots of people find that helps. But whatever the side effects - none of them are worse than what GCA can do.

This too shall pass...

I totally agree.

I have finally gotten used to the double take a few people do when my face really. 

It has gone down on the 12.5 mg. dosage. I'm concerned my rheumatologist might increase the prednisone on Monday, but whatever happens, I'll do.

This was just so new to me & I was embarrassed but it certainly beats the alternative.

I appreciate your advice, & will follow your advice.

I saw my doctor today.

He said if there ever was any doubt about this being GCA/PMR all these headaches & soreness of the scalp certainly are proof of it.

He raised my prednisone from 12.5 up to 20 again. He really didn't want to do it but said we need to find a comfort zone. All this got much worse after we went to 12.5. He told me to contact him in 3 days and let him know if I'm doing better using the 20. again. He said he hates having me on prednisone for an extended period of time. I knew the prednisone was going up before I left home today. He told me to eat 5 small meals a day, eat some protein & cheese. He said as you know prednisone makes you eat a lot & you need to try to fool the brain into thinking you aren't really that hungary.

 It's been a very rough 5 days.  Last night I had to sleep in my reclining chair.  My head was too sore to lay down. This makes 3 times in the past 5 weeks sleeping in my chair.

He wants me to "investigate" a drug called ACTENRA. He said to read reviews from other patients who have or are using it. See if my insurance will cover it. Just look it over & "maybe" next month we can discuss it. He said this is a self-administered injection & it's done once every 4 weeks. This, as I understood him to say, would be used in conjunction with the prednisone.

Are any of you on the forum using or have used this med?

I haven't had time to look into it yet.

He said it should help with the Sjogren's Syndrom.

He said my liver panel was a little elevated & we need to keep a watchful eye on that.

He wasn't too concerned about my feet. I'm on the max dosage of Gabapentin (2400 mg.) daily.

He was just terribly concerned with my head problems. He kept feeling the sides of my head. I suppose it was checking for the blood flow. Don't know if he could get a pulse there or not.

Sorry to be so long but I wanted to let Eileen know I looked into the foot problem.

You are all so helpful.

I feel like this is one big extended family.

Thank you one and all.

There are a lot of people on Actemra/tocilizumab on the HealthUnlocked PMRGCA forum. The link is in the resources post

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

It is used alongside pred to start but it allows very speedy reduction of the pred, sometimes patients get off it altogether by most manage down to well below 10mg. Most people on it are in the USA and most insurances cover it - although some only cover it as monthly infusions done in hospital despite that being even more expensive! 

I'm a bit surprised he has only given you 20mg pred when he agrees it is GCA - no wonder he is concerned about your head. If your headaches are no better on 20mg then you really do need to go higher. This is potential risk to vision we are talking about here - not just a bad headache that stops you sleeping. And it isn't the presence or absence of a pulse at the temples that counts - it is what is going on inside your skull, especially in the occipital region, at the back of your head.

If the headache doesn't improve soon - and if you get ANY visual symptoms at all, however fleeting or minor they seem to you, do please contact your doctor immediately and go to the ED if he isn't available. A couple of hours wait may be OK - overnight may not be.

PS - I meant to say and forgot: I find eating frequently even if small meals makes the hunger worse as does eating more than a very small amount of carbs in a meal. The pred tends to make your blood sugar spike and so your body produces a load of insulin which makes the blood sugar level fall very quickly and go too low - so your body craves carbs to bring the BS back where it should be, it overshoots, more insulin is made - rinse and repeat.  Even though I only eat 2 low carbs meals a day I rarely feel hungry between those meals - except a couple of hours or less after eating carbs as a so-called treat.  

The only thing I can add is that tocilizumab (Actemra) may affect the liver so this is something to keep in mind, depending what your doctor means about your "liver panel" being elevated.  It could well be that you'd be better off with a higher dose of pred.  

I just checked my e-mail.

Have a note from my doctor.

I wrote him that while the increase of prednisone helped it didn't do enough for me.

His response to me is ....O.K. then we will start the Actemra. It will be administered once a month. Said he will order it & see if there are any difficulties getting it approved.His nurse will teach me how to inject it. Then he must have done further research & found out that Medicare will cover all cost if I get it in the IV form. Obviously, I'll go the IV form.

Need to write him & see if he wants to wait till I see him next month or start sooner.

Keep your fingers crossed this will help me.

That sounds good.  Keep us posted!

  All the best.