Advice?: Newly diagnosed with PMR. Had a tapering... - PMRGCAuk

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Advice?

DianneRose409
DianneRose409

Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested in the latter, however I need an eye exam and the eye doctors are not yet receiving patients due to Covid. Any comments on these 3 meds???

39 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Very high doses for PMR - are you sure you don’t have GCA?

Where do you live? Can you give us a bit more information as to why you started at such high dose.

Tocilizumub is usually on used in UK for GCA, which I why I ask where you live.

Good catch~ I live in the US. I went to the Emergency Room (ER) on 3/22/2020 when I could not walk, stand and my entire being was an inflammatory throb. At that time a coworker who is a Physician recommended they take my Sed Rate and CRP levels. Results were Sed Rate 87, CRP 95.9. (no typos here). I am now awaiting my 5/27/2020 appointment for labs done 4/27/2020. My inflammation has gone down significantly but I cannot walk more than 2-3 minutes or can I stand for that same time. I am aware of the adverse effects of the 3 medications I was questioning...but I wanted some "real patients" to inform me. I am skeptical of Methotrexate and do not know enough about tocilizumab.

PMRpro
PMRproAmbassador in reply to DianneRose409

You need to build up the walking very slowly - like to the gate and back for a week, then twice for a week.

One guy, a ski teacher, was in a wheelchair with PMR at Easter 3 years ago and beside himself because he thought it would always be like that. He started with 5 min walk out and back. Then 6 min out and back, building up by adding 1min to the distance out each week or so. It will mount up quicker than you think but it MUST be slow. By the autumn he was doing so well he skied all winter, And the following winter he got a regional award as best ski teacher. Mich is over 80. In summer he rides a bike up and down the local mountains!

To start with see how far you can walk without feeling it next day. Have a rest day between each walk. Practice that for a week and add a minute. If you still feel OK on the rest day, repeat the process. If you don't stay at the previous level for another week. It will happen just as it did for him.

healthunlocked.com/pmrgcauk...

DianneRose409
DianneRose409 in reply to PMRpro

Loving the tips!! I just got back to work (have to pay bills) and noticed the first day back with walking made me very fatigued at the end of the day. I have been using my stationary bike almost daily and now I am actually doing some gardening.

Cyclo5
Cyclo5 in reply to PMRpro

What à wonderful inspiration

PMRpro
PMRproAmbassador

IF what you have is "only" PMR I personally wouldn't take any of the three until I had had a good go at reducing the pred dose on my own. Tocilizumab is only an option for PMR for some people in the USA - it is not approved for PMR and IMHO really is something of a sledgehammer to crack a walnut! It is a heavy-duty biologic with potentially serious adverse affects. There are a few people on it on the forum for GCA - where far higher doses of pred are required. Not sure if anyone has had it for PMR.

Both methotrexate and hydroxychloroquine are touted as steroid sparers - hydroxy probably has fewer side effects but also doesn't have much track record for success in PMR. It has potential adverse effects on the retina - it isn't something with no problems either. Methotrexate has its own adverse effects, I have tried it, I lasted a month but which time I could barely put one foot in front of the other - the fatigue was unbelievable. I had no nausea but my hair started to fall out in clumps and I was permanently hungry, gaining over 2 lbs in the 4 weeks! I also bruised. None of these are as bad for me on pred alone! It can take up to a year to see any effect on dose with mtx - and if you go about reducing the pred dose properly then maybe you'd have got there anyway.

DianneRose409
DianneRose409 in reply to PMRpro

Please educate me...What is IMHO? I am not yet sure if I have GCA with my PMR but my labs would suggest such. I do get headaches, and while working in February informed a coworker that I saw a "flash" in my right eye and shortly after that (and still have) blackened "floaties". I have chronic headaches (especially brought on by neck positioning). Would like the hydroxy only because it has been on the market for quite some time.

PMRpro
PMRproAmbassador in reply to DianneRose409

In My Humble Opinion ;)

Tocilizumab has been around nearly 10 years - not particularly new. MTX has been used for over 30 years as a first line drug for RA.

But the time it has been around is nothing to do with whether it WORKS or not. If they decide you have GCA then tocilizumb makes sense. But none of them really make much sense for PMR and mtx and hydroxy haven't any solid proof that they work to back them up. mtx might get you to a couple of mg lower than pred alone - but at the expense of having to take an immunosuppressant as well with the risks of infection that entails.

You can have high blood markers with PMR - and low ones with GCA. They are not predictive, just another brick in the wall of evidence. That isn't a typical visual effect of GCA - sounds more like this:

health.clevelandclinic.org/...

but it is always worth seeing the optician when it happens - GP is no use but the optician can look at the back of your eye.

A headache that comes and goes with moving your head is less likely to be GCA - especially if paracetamol works.

DianneRose409
DianneRose409 in reply to PMRpro

I tend to agree with your assessment. I believe that I do not have GCA. My MD wants to make sure that if I do decide to take Hydroxy that I see an eye doctor first. Don't think eye doctor in US are seeing patients yet. Acetaminophen does not work for my headaches. I have been taking aspirin 325mg x2. Seems to help. Have not had any increased bleeding, etc.

tangocharlie
tangocharlie in reply to PMRpro

Just a thought, with those high inflammation markers, docs might be suspecting something like LVV or some other vasculitis on the spectrum somewhere between PMR and GCA, hence why doctor are thinking along the lines of Tocilizumab?

DianneRose409: The flash in your eye followed by black floaters has all the markers of a detached retina. IMHO, you need to see an Ophthalmologist immediately. This can be an emergency situation where you can lose your vision. This condition is normally repaired almost painlessly with laser surgery but you cannot wait. Time is of the essence. Please at least make a call today and speak with someone.

Good luck.

Globesaver

I can't get into an ophthalmologist until this Covid thing is done. Called 3 of them already and they are not open. It started in February 2020. My Rheumatologist believes it might be macular degeneration. My mom had it.

PMRpro
PMRproAmbassador in reply to DianneRose409

There must be an emergency option available surely?

I have severe macular degeneration, a rare condition called Retinitis Pigmentosa or RP. Some general green flashing in your eye is normal as are floaters, as the vitreous in the eyes breaks down as we age, though mine was so severe I had a vitrectomy. But both can be also be signs of other things. If yours came on suddenly one day I really would get investigated. There must be a way of seeing an eye specialist even in Covid days, and someone will have to look at your eyes to rule out GCA anyway.

I am keeping an eye on it (no pun intended...lol). Monitoring it. Macular degeneration runs in my family and that is what my Rheumatologist believes it is...I tend to agree. If I have any increased issues I will go to the Emergency Room.

Hidden
Hidden in reply to DianneRose409

It's really difficult to find a phrase better then keeping an eye on it....I find myself deleting it lots when trying to tell someone to look out for visual symptoms. See even the less obvious is obvious🤦‍♀️ but please do....

PMRpro
PMRproAmbassador in reply to Hidden

"Be alert" ;) ;) ;)

Hidden
Hidden in reply to PMRpro

Good one

I don't think it's relevant what somebody 'believes', that's Trumpian logic. You need actual tests and answers! Hope you get sorted out soon.

Hidden
Hidden in reply to tangocharlie

A new word enters the scientific lexicon, let's hope it's not paradigm shifting. 😱

My question for the docs would be, how are they a better bet and lower risk (for you) than a slow taper of Pred? I’d want that answered fully.

PMRpro
PMRproAmbassador in reply to SnazzyD

With references!!!!!!!

DianneRose409
DianneRose409 in reply to PMRpro

Hmmmm....good idea. I won't be seeing her till May 27th. I am just concerned because the prednisone makes me feel all "Jacked Up" and on speed...a feeling I am uncomfortable with. Any suggestions?

PMRpro
PMRproAmbassador in reply to DianneRose409

Can't help I'm afraid - never had that effect on me.

But I don't get any worse infections on pred. And don't let him pull the wool over your eyes - if you are immunocompromised on 20mg pred, you are likely to be MORE immunocompromised on tocilizumab or methotrexate. They suppress the immune system - if you get an infection, you stop them until the infection is cured. Hydroxy I don't know about.

DianneRose409
DianneRose409 in reply to PMRpro

Many thanks. I appreciate your input.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to DianneRose409

I was started on 80mg for 2 weeks, then down to 60mg for 6 weeks so know where you are coming from! But now you are in 20mg those ‘wired’ feelings should go.

They are beginning to wind down. :)

The problem is the dose of Prednisone that I am on. 20mg daily. If it were to go long term it would put me at risk for infections, etc. Per my MD, I am immunocompromised.

But the alternatives offered also immunocompromise you so it comes down to deciding which is the lesser of 4 evils, to put it emotively. Perhaps I’m seeing it too simplistically but at least with the Pred you reduce the dose down to suit your PMR activity whereas the others it is all or nothing without masses of positive evidence for PMR. When you say 20mg long term, what do you mean by long term?

PMRpro
PMRproAmbassador in reply to DianneRose409

It is very unlikely you wil stay at 20mg long term. After some 4-6 weeks you start to taper the dose to find the lowest dose that gives the same affect in terms of PMR management. Most people get below 10mg relatively quickly. Then the effects are far less - your body needs and makes about the same as 7.5mg steroid in the natural form of cortisol to be able to function properly anyway.

DianneRose409
DianneRose409 in reply to PMRpro

I hope you are right. I will keep you posted. Next appointment 5/27. Thank you.

DianneRose409 What symptoms are you getting with your eyes? Currently I'm on 20 mg but still getting blurred vision without my glasses. I think I will see my optician after the Bank Holiday to get him to check my pressures. (he agreed to do this for me leaving his mobile 'phone number) Also, after taking pred I get the shakes which continues all day...horrible feeling. I seem to be getting headaches again too...one every other day, which are quite bad but not as bad as those I used to get before being diagnosed with PMR. Now have numb left foot too, so presuming this is a vascular problem.....oh the joys !!

Anne

I have been in both situations. Was diagnosed with PMR at age 51. Started on Pred at 15mg and slow tapered. It worked well for me for several years. Aside from the usual side effects at doses above 10mg (fatigue, hunger, redistribution of lumps) I had minimal side effects, which were managed with low carb, good sleep hygiene and staged but steady exercise. Almost no side effects once below 10mg. I stayed between 2-4 mg for a few years then unfortunately developed GCA. Back up on high dose, then a year in went on TCZ. It has worked well for me. No side effects other than cholesterol has creeped up. I’m off the Prednisone and have not had issues with lots of infections. Still need low carb to prevent wgt gain and mouth sores. Have tapered to every two week self injections. I would say TZC is a bit like using a cannon to shoot a squirrel if you’ve only got PMR. Different story for GCA.

PMRpro
PMRproAmbassador in reply to PMR2011

"I would say TZC is a bit like using a cannon to shoot a squirrel if you’ve only got PMR."

My thoughts exactly - love the analogy ... ;)

Hi DianneRose409 Probably not much help with your question, but I had a course of Hydroxychloroquine many years ago, long before PMR and GCA became my so called friends. It was for a very long standing back pain problem, years. After 3 weeks the pain in my back started to ease, amazing I thought, anything else only ever took the edge of the constant pain. During the next week my vision became slightly blurry, nothing much at first, but very quickly became a lot worse. I couldn't see well enough to read, watch TV, or drive. Hydroxychloroquine was stopped, and within a few days vision started to clear. It took 3 months to return to normal, and have just seen PMRpro's comment on her reply to you, mentioning the potential adverse affects on the retina, it all makes sense now. Hydroxychloroquine is at the TOP of my medical records as a NO NO. I cringed when I saw that it was a potential drug for use in COVID19 I have been on Prednisolone for my journey with PMR and GCA for almost 2 years now, and all is going well. All the best with your decision on what to take. Trevor.

PMRpro
PMRproAmbassador in reply to pmrgcavictim

That is part of the "Don't use it in Covid" message from the study - visual risks and cardiotoxicity which can result in cardia arrest!

sciencemag.org/news/2020/04...

Just because it is old, doesn't mean it is entirely safe!

Thank you for your advice. Most appreciated. With all the pros and cons I am hearing about on this forum I am better prepared to make a decision with my options.

PS I once asked my rheumy (a big name in the PMR/GCA world) about taking Hydroxy and she was dead against it. Not shown to have any impact on PMR and can do horrible things to your eyesight, which in my case is bad enough already. A lot of people who have Sjogrens syndrome take it.

PMRpro
PMRproAmbassador in reply to tangocharlie

And lupus - Trump pushing it for Covid worried them to death because there are problems getting it at times anyway. Big differences between different manufacturers.

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