Biological next step

[Pass7]

tapered to 11.5 by the slow method. Now a flare. Rheumy wants me to start with Embrel a biological with proven records. I hope insurance gives the go ahead real soon. Still in pain.

Has anybody tried a lidocaine patch? Benadryl to help with sleep?

[piglette]

I thought Embrel was really for Rheumatoid Arthritis and helps stop joint damage. As PMR is an illness that causes muscle pain not joint pain I am surprised they are using it, but who am I to comment! If you have had a flare it is a good idea to increase your steroids for a short time to really hit the PMR on the head and then reduce to a bit above your original dose after a week or so.

[PMRpro Ambassador]

Proven record in what? If you have PMR, its effect there is less than impressive:

ncbi.nlm.nih.gov/pmc/articl...

"Etanercept monotherapy ameliorates disease activity in GC naïve patients with PMR. However, the effect is modest, indicating a minor role of TNF-α in PMR."

In fact, the consensus in the 2015 Recommendations for treating PMR was that anti-TNF biologics should be avoided as there was little benefit but considerable potential for adverse effects.

Lidocaine patches won't work for PMR - an adequate dose of pred at any given time is the best solution for PMR pain. If your rheumy wants to try a biologic then Actemra would be the obvious choice.

[PRL1957 in reply to PMRpro]

Hi, PMRpro,

Thanks for posting that link to the Kreiner and Galbo (2010) paper.

My own literature searching led me to the possible role of TNF-α in PMR. It seems that the potential therapeutic benefits of anti-TNF-α drugs have been looked at a few times, but without showing much promise. Manzo et al. (2022) reviewed the literature:

mdpi.com/2075-4426/12/3/329 or doi.org/10.3390/jpm12030329

They reported that only two anti-TNF-α drugs (etanercept and infliximab) had be tried, and reached a similar conclusion:

'According to our literature search, etanercept and infliximab have been scarcely successful in patients with PMR, with the exception of a very small subgroup. Indeed, randomized controlled trials did not confirm the positive results reported in case reports and/or case series.'

Your final comment on Actemra is also interesting. Are you aware that a web page from the Johns Hopkins Arthritis Center mentions it for GCA?

hopkinsarthritis.org/patien...

[PMRpro Ambassador in reply to PRL1957]

Of course I am aware of it being used for GCA even without seeing JH's website - one of our members was on the NICE approval committee for its use in the UK for GCA, We followed the Giacta trial from its inception, There are quite a lot of patients on the forum who are on Actemra, including me though I don't have GCA but PMR. It was approved for use in GCA as injections in 2017, the iv version in 2022.

There are several sub-groups within the PMR community - pred works for all of them. The so-called steroid-sparers are much more selective and include methotrexate, leflunomide and Actemra, Each will work relatively well for a cohort of patients but none of them appear to work for all. Methotrexate works for a small cohort and may sometimes get them off pred altogether and the same applies to leflunomide. Both have considerable adverse effects of their own and for some patients they do absolutely nothing. Actemra is much the same. It acts very specifically on IL-6 mediated inflammation - but for half of patients there are up to 2 or more other proven mechanisms which Actemra cannot influence. Judging on my own experience, I think this may also apply in PMR. But I have been able to get down from nearly 20mg to 8mg with no return of PMR symptoms. I will try 7mg, 6mg is definitely too low. It still is NOT a cure though.

There is evidence that SOME patients have a small component of TNF involved in their PMR and another group responded to JAK inhibitors. there is work to be done - but at the present time, there is no justification for putting a patient on TNF inhibitors without having tried Actemra first.

[PRL1957 in reply to PMRpro]

Thank-you very much for your reply.

[Rugger in reply to PRL1957]

I was on Actemra for 2 years for GCA, with really good effect. However it is rationed to one year's treatment by the NHS in England (this was extended during the height of the pandemic, so some of us were fortunate to get more). It targets IL-6, which is implicated in GCA for some.

After 8 months on Methotrexate, with no noticable benefit and a return of PMR-like pains, I am now back on prednisolone! I am thankful for those 2 'good' years, but wish it had been for longer!

PMR: 2016

GCA-LVV: 2019

[Elephants2019 in reply to PMRpro]

you are such a wealth of information! I am always impressed by your willingness to share your knowledge….you probably help more people than you will ever be aware of ! ❤️

[Pass7 in reply to PMRpro]

after another conversation with doctor the golimumab, not enbrel, is prescribed for my RA. When I read your referenced article did I read that those with RA & PMR there is a bit of progress? At this point I’ll take any improvement. Thank you for information

[Exflex]

Taking Benadryl long-term may cause problems (emphasis on the word may):

healthline.com/health/alzhe...

[DakotaMae]

The FDA recently approved Kevzara for PMR treatment. It seems they are similar. I participated in what I believe was a pre-announcement focus group session for Kevzara. If it’s the same, the injections were given for two months maximum and helped patients taper off steroids completely although PMR returned within a year.

everydayhealth.com/rheumati...

[PMRpro Ambassador in reply to DakotaMae]

I'm not sure that is correct. In the clinical trials it was given every 2 weeks for 52 weeks - the steroid taper was over 14 weeks,

[DakotaMae in reply to PMRpro]

I wasn’t sure which drug was being discussed in the focus group, so I wonder which drug that one was and maybe it hasn’t been announced yet? They mentioned that the drug being discussed in the focus group was also used to treat RA, so everything sounds so similar.

[DakotaMae in reply to PMRpro]

Just saw this announcement about trials for treating PMR with rituximab. It seems more aligned with the study I had heard of earlier and I wonder if you have any knowledge of this treatment? rheumatologyadvisor.com/hom...

[PMRpro Ambassador in reply to DakotaMae]

I know about rituximab but not a lot about using it for PMR - seems a bit of a hammer to crack a nut but hey-ho, It won't be a single treatment, in most vasculitides it is used for it is repeated 6-monthly at least and is still IRO of £7K a year. And given how people complain about pred side effects - I don't see them jumping for joy at the potential rituximab effects!

[carolpatriarco01]

Has anyone started kevzara?

[carolpatriarco01]

has anyone started kevzara?

[HeronNS in reply to carolpatriarco01]

Why not make a new post asking that question, then more people will see it?

[Pass7 in reply to carolpatriarco01]

according to Kevzara site the patient must have taken at least one other med called a DMARD that didn’t work prior to Kevzara.

[HeronNS]

How long have you been taking pred? I note you joined the forum late last year so if you've only been on pred for six months or so it's odd that your doctor would be recommending other treatments already. But perhaps you've been taking pred for a couple of years?

[Pass7 in reply to HeronNS]

almost 2 years on prednisone. Rheumy wants me off it but is letting me go the very slow 1/2 mg per month. At 11 mg per day now. 2 prior flares.

[HeronNS in reply to Pass7]

Ah, probably wants you to get lower, as the pred side effects are much reduced once dose down to single digits. Sorry to hear you've had trouble tapering.

[Sharitone]

My sleeping problems were improved with prescribed sleeping tablets. Everyone is reluctant to take sleeping medication, but in my case at least, I was able to reduce them with the pred dose and come off entirely at about 5mg of pred, so dependency was not a problem. An extra couple of hours' sleep a night makes all the difference!