Dr had me crying today!

Thank you, I am watching the scalp pain, it seems to be gone for now but afraid with the tapering it may return so going to stay at the 10mil until I find another Dr or see if my Neuro Dr will continue treating me.

Personally, I submit your prednisone is more important than prolia.  Bone density can be managed through non-medical means (I hope you did not have dire results from your DXA scan) whereas pred is a necessity for PMR/GCA.

Hi Anhaga,

my bone density numbers were off the charts and my vitamin d levels as well, Im on 50,000 mil of vitamin d a week for eight weeks. Dr said Im extremely high risk for fractures and strongly recommends the prolia but Im delaying it for now.

Please make sure you're also getting your vitamin K2 and some magnesium as well - they will both help calcium go into your bones!  Good Luck!

I agree an wanted to do the same inthe office! Absolutely a cold fish.

Thank you snapperblue for the response, it made me laugh even though its no laughing matter.

I agree and laughed when reading your response so thank you, even though its no laughing matter!~

I don't want to hijack this post, but please tell me WHY youur doctor insists you need Fosamax when it's proven that non-medical means can improve bone density.  Did you have very dire bone density results from your DXA scan?

Not very dire --- it is just what they recommend when we take prednisone.

I told her today that I will manage with non-medical means.  She did not like it..... and I don't care.

I told her I do well drinking Green Tea and take gentle yoga classes which have been helping my muscle inflammation.  She said I should be DONE with PMR after 2 years....Well, I wished.

I told her about this excellent support group, and she looked like this would not be trustworthy.  ONLY the American Medical RA would be knowledgeable about PMR.  Good grief!

She was reasonable about the reduction of prednisone which is now 6 1/2 and I feel allright.   I should reduce 1/2 mg in 2-3 months.  I think this is doable.  This visit was fairly disappointing.

Hi Erika

I totally agree with you, I'm 64 and was told my bones are that of someone in their nineties, I was on Fosamax for many years but off for many now and they are doing the Prolia next week unless I postpone the first injection. Its a twice a year shot and Im worried about the side effects as it mentions bone and muscle pains, just what I need. Many have told me they had no bad effects but then again who knows.

Im at 10 mil of pred and feeling very sore and achy, was perfect at 12&1/2 mil but Dr. crazy doesnt want me to go back up. Im staying here for a bit longer then will try to taper down to 9 or 9&1/2 mil and see how that goes.

Good luck to you too!

i was recommended AA as well, fairly strenuously I should add, but have done brillirantly all by myself with supplements, diet and exercise.  I think it is different for someone who has serious bone problems already, but I think using the drugs as a preventative measure is totally the wrong thing to do.  

Yes, a slow taper should work well if your PMR is behaving.  I'm down to 2 mg now.  

This is great!  I hope I will get to 2 mg eventually.  I will let you know.....in a few months. 

If you have problems at 10mg then reducing isn't going to help them. Do try to replace Dr crazy and stay at 10mg at least until you find someone.

Strangely, the ACR (USA) and EULAR (Europe) say much the same thing about PMR and GCA! They publish recommendations together. Luckily there are some Europeans who realise that PMR lasts a bit longer than 2 years in the majority of cases. And the figures I so often quote: 25% off pred in two years, 50% in up to 4 to 6 years, the other 25% take longer, stay on pred for life, came from an American publication!

The PMRGCA charities all have close relationships with consultant rheumatologists throughout the UK - including Prof Baskar Dasgupta who is acknowledged as a world leader in GCA. He and others have been part of the committees drawing up recommendations in the past - together with members from the USA.

Eileen, thank you for your input about the length PMR  can take.  I have had PMR for 2 1/2 years and trying to reduce to 5 mg, but I had a few "hick ups", and I find 6 1/2 is working better.  I will try again the slow method and hope to reach 5 mg which she says is safer.  Anything above is not.......

She is like most RA doctors in the US.  I just had the feeling that she does not know much about PMR, and showed very little empathy about the pain we can go through.

I am grateful for this website which has given me understanding and guidance much more than any RA doctor or GP has been able to give me.

I feel they go strictly by the "book" and don't listen well what the patient is saying. 

 

I'm sure 5mg is "safer" - however there are plenty of doctors who would say that 7mg is also pretty safe, since it is about the physiological dose (what the body makes anyway).

And if 5mg doesn't work - it doesn't matter if it is safer does it?

Yes, you are right.  If 5 mg does not make me feel better, it does not do me any good.  I always thought that 7 mg would be what the body makes.  

She just wanted to make her point how BAD prednisone is ---- but it is the only medication which helps.

As the whole world of experts admits - beggars can't be choosers. Maybe she just can't cope with the fact she feels a failure for not being able to cure you? Tell her that's fine - just would she at least allow you to accept her best effort: enough pred!

Thank you

Erika,

It was the drug Reclast, given as an IV, that acted like a catalyst and started my GCA three days later. It's now seven years later and I still can't get off prednisone (80mg down to 5mg). Since I also take MTX and Actemra I don't know how to reduce or if I'll ever get off pred. The rheumy took me down to .6ml of MTX from .8ml. We're going to try to get me off the MTX first. I see her once a month with lab work before the appointment. In the past my 1st flare happened when I was at 1mg pred. and the other 3 when I was off everything for a few months. Should I stay at 5mg pred and get off all the MTX and Actemra? I don't know how Actemra works and if I stay on that long term and get off the pred? Help please!

Sharon - I'm sending a hug your way. No one should be treated that way. Good luck to you.  Jan

Why can't you get off the pred? What happens? Does the GCA come back or do you have other problems?

The latest drug for GCA is tocilizumab - and it is being used already in the USA. Genentech is helping with funding and insurances will cover it under certain circumstances.

However - personally I wouldn't worry about being on 5mg pred for the rest of my life. And you never know - one gentleman with GCA got off pred altogether after 11 years!

I agree with you.  I am okay with 6 1/2 mg of prednisone, and I will not rush to reduce further.  It might take 4 - 6 months --- and when I eventually reach 5 mg, I might stay for life time.

Actemra is tocilizumab, isn't it?  If it is working it should enable you to wean off the pred much more easily as far as I know - that's what seems to have happened for a couple of other people posting on the forums who have been given Actemra.

Actemra was offered to me for PMR. I'm reluctant because the warning section starts with "...changes the way your immune system works." Life threatening infections are a possibility. I know every drug has a list of alarming side effects, and nobody likes the ones from prednisone, but it seems like the lesser of two evils to me.

I know the drugs are scary.  And I'm sure someone with more medical knowhow than I have will be able to explain better than I cand.  I believe the changes to the immune system are in fact what we want when the immune system is misbehaving as in PMR or GCA.  The way I understand the difference between pred and tocilizumab is - pred is like using an ointment ot soothe a rash.  Over time the skin heals, but there remain residual problems and the rash can return as soon as the oinment is discontinued.  The tocilizumab actually works to control, perhaps even to heal, the mechanism which is causing the condition.  I think the jury is out on whether it creates a permanent remission but if it does it's likely to end up being much preferred to the symptom control of pred.

Thanks for that perspective. I'll try to keep an open mind.

in PMR there is Interleukin 6 present which is possibly involved in causing the inflammation which prednisone then reduces. Prednisone reduces the symptoms. Tocilizumab occupies the sites that Interleukin 6 would normally occupy thus hopefully preventing the inflammation. I haven't found an explanation or description for why the Interleukin 6 is high in the first place, what happens to it when it can't occupy its normal sites (is production of it by the body stopped or does it increase further), and what happens when the tocilizumab is stopped. My poorly informed suspicion is that In general it works earlier in the chain that gives us symptoms so there is probably some hope.

I agree with Eileen.  5 mg Prednisone could be just fine.  I must always reveal that I have been on an antiviral now for a year and 1/2 as some American doctors have noted a relationship to the Zoster Virus and GCA.  I have had a PMR flair when trying to reduce Prednisone, but no GCA flair. Sadly my doctor in Colorado died last summer, but there are still doctors doing research mainly a Doctor MARIA A. NAGEL, MD Assistant Professor Department of Neurology.  If anyone interested let me know.  We travel a rocky path.

I live in the US and have asked about Actemra/tocilizumab. I was told that the study that came out last year have a very small number of patients and that to date Actemra is not the first drug used in the treatment of PMR.  But, I haven't been able to scare up any Pred. DR.  which makes more sense to me than Pred IR.  Nor have the doctors I've consulted talked about splitting doses which a fair number of patients on these forums seem to do.  Different strokes?  

I really really like my Rheumy at Kaiser, HMO. But sometimes I think she's constrained by Kaiser treatment protocols.

I wouldn't know how to judge which might be the lesser of the two evils.  I think I'd go for it if it were offered. But I haven't had that opportunity.  I think the length of treatment would be a consideration and the possibility of avoiding the long and tricky Prednisone taper as well as the side effects. Another consideration might be long term effects of the Actemra after treatment is discontinued. There is a lot to think about for sure.  

It is one of the inflammatory cytokines shed in the body daily.

"Interleukin-6 is a cytokine not only involved in inflammation and infection responses but also in the regulation of metabolic, regenerative, and neural processes"

They are involved in normal processes in the body anyway but the signalling changes - this review is a really heavy read:

The pro- and anti-inflammatory properties of the cytokine interleukin-6

Jürgen Schellera, , 

Athena Chalarisb, 

Dirk Schmidt-Arrasb, 

Stefan Rose-John

but is about it all - and the possible medaitory action of tocilizumab.

The Giacta study which reported first results in Novemeber was a Phase 3 study for GCA which included 251 patients!

"GiACTA (NCT01791153) is a Phase III, global, randomised, double-blind, placebo-controlled trial investigating the efficacy and safety of Actemra/RoActemra as a novel treatment for GCA. It is the largest clinical trial ever conducted in GCA and the first to use blinded, variable-dose, variable-duration steroid regimens. The multicentre study was conducted in 251 patients across 76 sites in 14 countries. The primary and key secondary endpoints were evaluated at 52 weeks."

The bullet points from the press release:

"Phase III GiACTA study shows Roche’s Actemra/RoActemra is superior to steroids alone in maintaining steroid-free remission for people with giant cell arteritis

- 56% of patients treated with Actemra/RoActemra achieved steroid-free disease remission at one year, versus 14% with a six-month steroid only taper regimen¹  

- Results will be submitted to regulatory authorities around the world by end of 2016

- Actemra/RoActemra enabled sustained remission at one year without ongoing steroids for 6 months and if approved, could have the potential to redefine the management of GCA"

No, it isn't first line for PMR, nor I suspect will it be for a long time on cost grounds - but PMR and GCA are closely related and there are rheumies in the US using it.

There are numbers of US rheumies who have suggested to their patients they try splitting when a single dose per day isn't covering them for 24 hours. It works - and that is th whole point of managing PMR: the therapy must be tailored to fit the patient - not the patient to the doctor's personal concepts.

Tocilizumab isn't new, it is already used in RA, has been for the last 7 years plus the clinical trials period prior to that - so probably at least 10 years. In RA I think it is used on a permanent basis - I may be wrong - or until it stops working/intolerable side effects appear.

thank you again.  Do you know if there's any research into the flair rate of split dosing?  And is there a typical pattern of splitting?  The last few nights, if I wake up to use the bathroom at around 4am, I've been taking 5mg of my daily dose, now 16.5.  I fall back to sleep and wake in better shape than if I slept through. 

Most people try 2/3 in the morning and the rest at some time later - a bit of experimenting helps identify the best time for YOU which is what matters.

Have tried taking all your dose at 5am? It will be working by the time you are ready to get up. The daily dose of inflammatory substances is shed in the body at about 4.30am. The sooner after that you take the pred the less work it has to do and the better you will feel by breakfast time. A study showed the optimum time to take pred is 2am - it reaches its peak in the blood by 4am or so and the inflammation never gets a hold.

This is so helpful.  My Rheumy is young and working at Kaiser, HMO, and has adopted their standard approach to treatment and dosing.  However she's very responsive, open and now really curious about adapting to patient needs.  I've been sharing things I've read with her, including things I've found here.  She's looking into the effects of split dosing on the natural  GC  circadian rhythm, concerned that DR Pred might have even a greater effect on downregulating the adrenal output if it kicks in before the morning  Natural GC surge.  We spoke yesterday.   Last night I googled this topic and found this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4249493/#!po=1.78571

 From the summary, ( I haven't read the whole thing yet.) it looks as though isn't a problem.  

My Rheumy is  checking with endocrinology to make sure.

 

I'm into Pred. 2 months now: 2 weeks at 15, 3 weeks at 20, three weeks 17.5, and a few days now at 16.5. My first taper was a bit too much, partly because I wasn't prepared for the combination of effects that hit me. It took about 12 days for things to even out. No flair. So we went for a third weekto stabilize. . The transition to 16.5 has been very smooth.  

The plan now is to reduce by .5mg per week until we slow down even further as we get down to 10mg.  At that time I suspect we'll use the Slow Down and Nearly Stop method used here.  

 

On a related note, there is a new clinical trial comparing DR Pred with IR Pred.  This is by Horizon Pharma who makes Rayos/Lodotra.  They have patients taking 4, 7, 10mgs DR. Pred.  vs 15 mgs IR Pred.  Patients take both Dr Pred and IR Pred. Aside from noting symptoms, I believe the measure of the outcome measures includes IL-6 levels.  I spoke to the Horizon people to ask about the study, and was told that they find IL-6 was a better measure of the underlying disease process than ESR or CRP.

 

That IL-6 is a better monitor is well known - but it is a relatively expensive test and not available in every lab and that is the main reason it isn't used.

I use Lodotra - it is the only alternative to Medrol where I live and Medrol caused me major side effects, not to mention not actually working at all! I personally think it is fantastic - but it ain't going to be available in the UK this side of hell freezing over! Luckily I don't live there...

I've started trying to understand more about the cytokine dumping and the native cortisol circadian rhythm.  I posted a link to an article that had lots of interesting information that seemed to have important implications for dosing, timing of doses, and treatment in general.

It is still in moderation (see above). If I read it correctly, both PMR and RA have high cytokine levels without an adequate increase in native cortisol to take care of the inflammation. Hence the usefulness of Pred. to handle the inflammation. But Pred is known to suppress native cortisol even more and that is not so good.  The timing and frequency of dosing will affect the amount of suppression and single morning dosing has become a standard of sorts.  The article offers other alternatives.  

To me, the most exciting finding was the following:  RA patients who had never been on IR Pred were given a DR Pred. at 10 pm in the evening, for release at @ 2am. These patients showed an increase in cortisol levels during the course of treatment. This was interpreted as a promising outcome. It was published in 2014: "Circadian rhythms in rheumatology - a glucocorticoid perspective"   

Eileen,

I do a very slow taper of the pred and I'm able to get off of it, however it takes about 1 1/2 yrs. After months the GCA comes back again and I'm back at 60mg. pred. The flare before this one I was on MTX for the first time with the pred but I don't think it helped me. This flare for the first time I had to go to 80mg pred, with MTX and Actemera (tocilizumab). With the GCA I don't know right awayifit'scoming back and can't just  add a few mg.pred as in PMR. I had PMR between flares 2 and 3 of GCA and only one PMR flare. The first GCA symptoms are not as easy to recognize as the first PMR symptoms.

This is such a complicated illness.  We are all different. How we metabolize the medicines is different. I think I remember someone on this board who posted that she had GCA and was put on an antiviral because of the association between GCA and Herpes Zoster.  I don't think she said how long she was on it or whether it was useful in keeping flares down.

I wonder if just sticking at about 5mg of pred on a long term basis might work? One and a half years to get off pred is very fast really. MTX isn't felt to make any difference in GCA.

However, TCZ may well achieve a no-pred status - it has in the clinical trials.

Eileen,

 Does one stay one the Actemra after getting off the pred? If not how long? Jan

I don't know - nor, I suspect does anyone! Remission of GCA seems to be achieved in about 6 months but how long the TCZ is then continued isn't clear. Nor is it yet known how long the remission lasts - it would be hoped it will be permanent but they haven't really got that far yet! I suppose the earlliest patients in the trial have been in remission for 2 or 3 years maybe.