GCA - PMR doing great after 2 months: To recap, I... - PMRGCAuk

PMRGCAuk
11,421 members20,822 posts

GCA - PMR doing great after 2 months

Rv8apilot
Rv8apilot

To recap, I had left temporal headache and PMR symptoms of hip, wrist and elbow arthralgias beginning in January of this year. I had no visual symptoms or jaw claudication. My sed rate was normal and CRP was slightly elevated. Prednisone 40 mg daily resulted in rapid resolution of all symptoms except for swollen, tender left temporal artery. Biopsy in early March confirmed GCA. Here's were my story is a little different from usual. Since I was asymptomatic, I decided to reduce my dose of prednisone to 20 mg daily, which I have continued until now. My PCP agreed with this. I remain asymptomatic, and my last sed rate was 2, CRP 0.05. I finally had my telemed appointment with my rheumatologist 2 days ago. He was great! He is the only person, including doctors, other than the people on this forum, that I have communicated with who knew anything about this disease. He prescribed alendronate for me and we made a plan for tapering my prednisone. I told him about the DSNS schedule which I had planned to use, and he said I could do that if I wanted, but that I would probably do fine with what he typically recommends, which is reduce from 20 mg by 2.5 mg every two weeks until I get to 10 mg, then reduce by 1 mg each month. We discussed biologics, and he agreed that we could hold off on Actemra unless I relapsed since I was doing well on prednisone. I am not recommending my treatment regimen for anyone else, since a lower dose of prednisone may result in recurrence or progression of the disease. I believe that it works for me because I am on the lower spectrum of this disease. Some people have severe symptoms and go blind or have other complications, and others, like me have a more indolent course. I also had a relatively rapid diagnosis which resulted in earlier treatment. Since my inflammatory markers are worthless for me, we will just watch for symptoms to see if an increase in medication or Actemra are indicated.

18 Replies
oldestnewest
Hidden
HiddenModerator

🤞🌻

PMRpro
PMRproAmbassador

There are quite a few doctors who believe 15-20mg is enough for most GCA cases but the aim is always to reduce any inflammation that might be threatening vision as quickly as possible because once it is gone, it is too late. 40mg is a "usual" starting dose if there are no visual symptoms or jaw pain.

It is great that 20mg is doing the job - hope it stays that way. With a relatively low dose I think I would be fairly reluctant to consider Actemra in the first year at least.

My only criticism? How does HE know you will probably be OK with such a speedy reduction - because that is fast even in the context of PMR. In GCA it is crazy fast.

Rv8apilot
Rv8apilot in reply to PMRpro

Right. I sort of thought the same thing. He said, "well, it hasn't been really studied." The DSNS method would take me down a bit slower with 26 day reductions to the new dose, assuming that I reduce by 2.5 mg at each reduction. At 10 mg, it would be about the same since I reduce the dose at 1 mg every 28 days by his recommendation. I could still go either way, and he would accept either method. I haven't quite decided......

Tamtan2
Tamtan2 in reply to Rv8apilot

What is DNS’s study 🙏🏽

PMRpro
PMRproAmbassador in reply to Tamtan2

It isn't a study, it is a way to smooth reduction steps so they upset the body less:

healthunlocked.com/pmrgcauk...

I developed it along with a load of PMR patients when people were having difficulty reducing in the size of steps their doctors were telling them to use. It was based on how a Swedish gentleman reduced below 5mg and originally was thought of for low doses where the "not more than 10% of the current dose got difficult" but some people at higher doses struggle too and many patients have used it or one of the other versions people have worked out for themselves.

The DSNS taper methos has been in use by Prof Mackie in Leeds for a clinical study - it seems to have been well received.

DSNS has been studied and as far as I am aware it is still ongoing.

We printed this article in 2018 by DR Sarah Mackie, a lead researcher into GCA and PMR.

It is much longer than on here - as it had the history of , whom, why and how these plans had been devised by patients for patients. wherefore.

However, this is the salient bit:

"We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as

part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a

research ethics committee; this study isn’t actually designed to test different steroid

reducing regimes, but is an exploration into causes of fatigue in people taking long-term

steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something

like it, is already used by many patients in the community and because we didn’t

necessarily want to taper steroids over-fast in people who were experiencing fatigue.

The study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose

symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of *various different approaches to

tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this –

you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, rheumatologist, Leeds."

*Various different approaches, yes, but this one fitted the bill for most people who had tried it. Since that date various others have been instigated and some of them are on here.

“We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as

part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a

research ethics committee; this study isn’t actually designed to test different steroid

reducing regimes, but is an exploration into causes of fatigue in people taking long-term

steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something

like it, is already used by many patients in the community and because we didn’t

necessarily want to taper steroids over-fast in people who were experiencing fatigue.

The study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose

symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of various different approaches to

tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this –

you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, rheumatologist, Leeds.

Now why does he want you on AA? Do you have osteoporosis if so there are other bisphosphonates you can take.

If no osteoporosis then a Dexa Scan to check bone density will tell you whether you need one or is this a 'just in case'?

AA is that last one I would take - facts first every time.

Rv8apilot
Rv8apilot in reply to jinasc

Thanks for the info on DSNS. I do not have osteoporosis. He said that I should be on it as preventive due to the long term steroids. Again, thanks for your input.

Hidden
HiddenModerator in reply to Rv8apilot

That's what the drs all say when you start pred. .....but if you don't have osteoporosis you don't need it. Diet and adcal are sufficient if your t scores are ok. When a scan is done, even if your scores are in osteopenic range, it doesn't require such a radical approach to bone health.

npr.org/2009/12/21/12160981...

I was told I needed AA 4 years ago, but not required after a scan and after the last scan in 2019, I was told I could drop the adcal if I wanted, dietary calcium would do. So don't just take your drs word. Tell them you want a dexa scan ASAP.

Rv8apilot
Rv8apilot in reply to Hidden

Good points. I have been taking supplemental calcium. I'll see what I can do about the scan.

Hidden
HiddenModerator in reply to Rv8apilot

Good. It best to know one way or the other. 😊🌻

I never did start the Alendronic Acid due to the fact I had to cancel my Dexa due to the Virus. I've heard such bad things about this drug, so for the time being just eating lots of Calcium based food and taking the Adcal/ K2, plus supplements which include D3. A friend of mine lost all of her jaw bone through AA. I take the Omeprazole every other day as that has it's problems too. I've heard that coated Pred is best to take so there would be no need for the PPI'S. I have a lot of un-coated that I must use up first, however today I tapered from 25 mg to 22.5 mg and the the 2.5 mg tabs are coated. Evidently, the coated Pred (I was told by a pharmacist) don't absorb as well as the un-coated.

Anne

PMRpro
PMRproAmbassador in reply to Staplehurst

They are absorbed differently - but not necessarily worse. The study that claimed that was done in patients with Crohns in the hope the enteric coated would get to the locally affected area and have a better effect. They probably weren't absorbing it as well because of the Crohns.

Hidden
Hidden

Hi Rv8apilot. I was on 60mg prednisone for possible GCA. It has been depermined I have 6th nerve palsy. I have been weaned off the prednisone. What I did find, it helped with my Firbromyalgia. I did get pretty shakey every day on the higher dose. Within 2 weeks my vision became single again. I have trouble focusing when in the car and I don't drive right now. Each day is better. I hope you can find a good way to keep your GCA under control. Th

PMRpro
PMRproAmbassador in reply to Hidden

Pred doesn't help with fibro - I bet it was really PMR!

Staplehurst
Staplehurst in reply to Hidden

What is 6th nerve palsy and how was this found out ?

Hidden
Hidden in reply to Staplehurst

cedars-sinai.org/health-lib...

Hello Rv8apilot well I have PMR and I can say I was trying the DSNS method and last week had my phone call appt with rheumy who suggested that since I am currently on 4 mg that I drop 1 mg per month, a bit slower than DSNS. She advised that as I did taper before on 1st rheumy's advice with symptoms coming back and she does not want that to happen again! Bottom line talk to you Dr. , and go from there, we are all individual in our taper and hopefully our rheumy is in our corner with us! Slow and steady and follow!

PMRpro
PMRproAmbassador in reply to Musiclady18

The whole point of DSNS is not that it is slower or faster - it is that you don't drop 1mg all in one go overnight from one day to the next but smooth it out a bit. And depending on where you start, the DSNS can take up to nearly 2 months to drop however much you choose to drop. Or even longer if you want.

You may also like...