Good Prednisone Sparers (and Bad)?

[schmuppy]

I must not be in proper remission - docs recently encouraged tapering, and I got down to 9 mg which caused a flare that I don't seem to be able to get out of. Went back up to 10 but still feel like body is full of concrete.

I'm seeing the rheumy on the 28th and in our last (first) visit she said she might have some ways to "trick" my body off pred, including sparers. Before I go, can you share your experiences with Methotrexate, Actemra, and anything else prescribed for that purpose? Not excited about Methotrexate, particularly since it doesn't seem to work for a lot of us. And she participated in some Actemra studies over here in the States, but is it even approved for garden-variety PMR with no GCA?

I'm tired of being in pain, walking like a penguin and looking like a balloon...

[Theziggy]

I'm tired of looking like a balloon and walking like a penguin lol

Though to be serious they (the Rheumys and Drs) tried methotrexate and other drugs with me - and they all caused breathing issues with the result that I am just on my Pred - tapering, tapering, tapering

[tangocharlie in reply to Theziggy]

Interesting - I had breathing issues with MTX too, so had to come off it after only a few weeks and the rheumatologist said they'd never heard of that reaction before!

[PMRpro Ambassador in reply to tangocharlie]

Led a sheltered life methinks!!!!

[tangocharlie in reply to PMRpro]

They've mentioned about trying me on it again so maybe they think it was an anomaly?

[PMRpro Ambassador]

"I must not be in proper remission "

Remission for PMR takes from about 2 years to much much longer - with a median duration of steroid management of 5.9 years. The pred does nothing to the actual disease process - it is there to manage the symptoms in the meantime until the autoimmune part of the PMR decides to burn out and only then are you "in remission".

You aren't tapering to zero - you are looking for the lowest dose that manages the inflammation in the meantime and, therefore, the symptoms as well as the starting dose did. You need to reduce in small steps and wait a bit to be sure the new dose is still enough. Did you do that? And how long have you been on pred so far?

Personally I fail to understand how they can claim to be able to "trick" the body off pred. In some people some other drugs seem to have some effect in PMR - but not for everyone and nothing works the same for everybody.

The only thing that is reliable is Actemra - and it doesn't work for everyone. Actemra works on the pathway in the body that produces IL-6 which is an inflammatory substance. If your PMR is caused by that then it will work and get you off pred - but it is fairly clear that both PMR and GCA can be caused by one or more of up to at least 3 different mechanisms and it all depends which version you have. In GCA about half of patients get off pred altogether, others get to a lower dose of pred but require both pred and the Actemra. Actemra is also a heavy duty drug, what is called a biologic and it has some potentially serious adverse effects. There are also several contraindications.

In the USA there are rheumatologists who are using it for PMR - there are also rheumatologists who aren't even enthusiastic about using it for GCA unless they have to because pred isn't working. How they get funding for it for PMR I don't know - that would be up to your insurance provider, unless there is a scheme from Genetech to fund it for PMR. I don't know if there is.

You can help the balloon bit by cutting carbs drastically - I lost 35lbs by doing so and there are others with similar stories. Once I was on enough pred I didn't walk like a penguin - but I know that is a problem for a lot of people.

[tangocharlie in reply to PMRpro]

Really useful info, thankyou once again PMRPro. Is there any info out there about the 'different kinds' or pathways of PMR? My rheumy has mentioned a few times about how PMR in younger people (I was 51 when diagnosed) may behave differently to others eg last longer but not gone into details.

[PMRpro Ambassador in reply to tangocharlie]

Not that I know of - I extrapolate from GCA which is the same disease to all intents and purposes and there are papers about it having 3 (at least) different things going on. And no, off the top of my head I don't have references.

I was 51 when mine started with stiffness in shoulders and it then progressed over months. It doesn't seem to have gone away at any point in the 15 years since and it is very resistant to management!!

[tangocharlie in reply to PMRpro]

Similar here - mine started after frozen shoulders, first one then spread to the other one too. In fact I remember asking my GP whether the shoulders should have 'unfrozen' by now after over a year, as Dr Google said they generally resolve after around 6 months. He sent me for physio, which made things worse, and the physio kept saying I had a strange knot of muscle at the base of my neck between the shoulder blades that woudn't go. My legs and hips had got very stiff and painful too by then, but they told me it as because I'd let myself get unfit (since having to give up exercise like tennis and swimming because of the pain in arms, neck and shoulders!) It's easy to join the dots looking back! I was also under a bit of stress around then, so that could have been a part of it. Also I had a bad flu-like lurgy that lasted for weeks before the frozen shoulders kicked off. It was defo a frozen shoulder in the beginning because they did a US which confirmed it, but I think it morphed into PMR.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

My “frozen shoulders” lasted 18months - only they weren’t! GCA!

[tangocharlie in reply to DorsetLady]

OMG! Did you have any other GCA symptoms?

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

As time went by, yes more and more, but as my (then ) GP was so fixated on the frozen shoulder diagnosis everything was attributed to that!

The look on her face when I rocked up to surgery on the Monday morning after having lost sight in eye and being correctly diagnosed by the duty ophthalmologist in A&E on the Saturday was priceless! And left her virtually speechless!

[PMRpro Ambassador in reply to DorsetLady]

As long as it remained fixated in the brain ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Don’t think she’d miss it again!

[PMRpro Ambassador in reply to DorsetLady]

jinasc's doctor recognised hers because as a young doctor she'd seen a case with sight loss and swore it would never happen on her watch again

[schmuppy in reply to PMRpro]

Diagnosed two years and a month ago - probably had it a few months before that. Began treating with the pred around 18 months ago plus I guess? Started at 10 mg because GP was afraid of Pred. Eventually went up to 15, then back down, tapering 1 mg per month according to new rheumy's instructions. Hit a wall at 9 mg twice. Back up to 10 but that's still not great. But she also saw signs of neuropathy in the thigh muscles and said she would like me to get down as low as I can do.

[PMRpro Ambassador in reply to schmuppy]

Neuropathy or atrophy?

[schmuppy in reply to PMRpro]

She said there were blood markers indicating neuropathy. She didn't use the word atrophy.

[PMRpro Ambassador in reply to schmuppy]

There are blood markers that would suggest muscle myopathy - there are none that I know of that would indicate neuropathy although they COULD show reasons why a patient would have neuropathic symptoms.

[Slosh in reply to PMRpro]

Thank you - as always informative.

[Marijo1951]

I've been taking methotrexate for just over two years. At the time it was first prescribed I couldn't get lower than 25 mg without having a GCA flare. I think it has been beneficial and I have managed to reduce slowly to my current dose of 6 mg. However I also think the fact that my doctors have been happy for me to reduce slowly at my own pace has helped me to avoid flaring again. I have a monthly blood test for liver and kidney function and, so far, everything has been fine.

[Hidden in reply to Marijo1951]

It helps not to feel the weight of internal or external pressure to reduce afap. It makes the whole process a little easier. I saw the rheumy a week ago having upped to 7mg due to flare/stress due to other issues and return of symptoms from the 6mg I had been at for a year. I wasn't too stressed but he still surprised me saying that's fine, manage as you need. I lead a charmed life rheumy wise.

[Marijo1951 in reply to Hidden]

I agree. I read on the forum how bossy and unempathetic some doctors can be. It's good to be treated like an intelligent adult.

[Noosat]

You said a "flare." What were the symptoms? I have reduced, very slowly to 4.5mg, and with each reduction I am leg heavy, tired etc. However, I tell myself that this is part of tapering and I put up with it as it gets better over time. When I find myself walking like a penguin, I tuck in the ab muscles and the glute muscles and concentrate walking like a normal person. This good posture helps and also takes my mind off the stiffness/balance problem.

[schmuppy in reply to Noosat]

I had almost two full weeks of feeling like I was getting worse and worse - it didn't feel like withdrawal to me, it just felt like the PMR symptoms were getting out of control.

I'm actually going back up to 12mg tonight because it seems as if 10mg just isn't where I'm comfortable.

[Noosat in reply to schmuppy]

So sorry to hear your news. Hopefully the increase will help and then you can start tapering again. Be patient and careful

[Singr]

With you there. My reduction under 10 made the last 6-8 months of my life miserable. Medics rushed my down to 7mg and I could barely get out of bed. We agreed it was too fast and I'm back up to 8 again.

[Suet3942]

Methotrexate has really helped me. Could feel when it ‘ kicked in’. Managing to reduce by 0.5 mg per month. Slow but sure.

[PMRpro Ambassador in reply to Suet3942]

How long did that take? A friend said the same about leflunomide.

[Suet3942 in reply to PMRpro]

About 6 weeks.

[PMRpro Ambassador in reply to Suet3942]

Ta muchly!