Rheumy f2f after flare

[Temoral]

Update...as advised, raised from 3.25 to 8mg and rang Rheumy Dept to inform them of flare. Was offered an f2f appt today. Not my usual Rheumy, but very thorough. Sent me for ultrasound whilst I was there and returned to her for results...no sign of i flamation.Her opinion was that I was having too many flares...I had recorded them for her and she was pleased to accept my list over the 3 years....7 wobbles altogether...I would say 4 proper flares. Arranged a whole raft of bloods tomo, as she wants to liase with other docs to see if I am steroid dependent and if I was a suitable patient for Methotrexate...which I expressed concern about as it is only 50% successful for GCA patients. She hinted that I could have Tocilizumbab? Actemra in order to titrate completely. First stage is to return gradually to 5mg by 1mg each week whilst the bloods are assessed. Then a nurse counsellor to discuss the new regime.I feel I might be persuaded to introduce one or the other...when I would like to just sit on 5, or 4 and just stay there...

Any and all advice and observations would be welcome to help me to self advocate. Many thanks in advance.

[PMRpro Ambassador]

"which I expressed concern about as it is only 50% successful for GCA patients"

Where did you find that figure from? It isn't even that effective in PMR and is used a lot less in GCA although Prof Quick said yesterday there are 3 studies using it in GCA - didn't say how good they suggested though. But if it really were 50% successful, I suspect they'd not be using tocilizumab. Or are you confusing MTX and TCZ in that respect? TCZ/Actemra only works 100% to get patients off pred in half of patients. Half continue to need some pred, but at a much lower dose unless they flare after stopping TCZ,

After only 3 years use of the term "steroid dependent" is meaningless - you need pred as long as the underlying autoimmune disorder is active and it can often be active for 4 to 5 years. It sounds to me as if your flares have been due to trying to force tapering and that if you rested at 5mg you might well get away with only pred.

[Temoral in reply to PMRpro]

Thanks for you response, and indeed all your responses thus far. I may indeed have confused the percentage...feeling a bit bombarded at the moment. Sorry. You are right in the fact that I did allow myself to be directed to taper faster that I wished...when I didn't advocate my opinions strongly enough...and I don't want this to happen here, but want to be able to present a good case.

[PMRpro Ambassador in reply to Temoral]

I bet you are being a bit overwhelmed - Prof Quick and I were discussing "slow" tapering yesterday. Except what we bang on about isn't that slow, especially when it works!!!!!

[Temoral in reply to PMRpro]

You are expressing my thoughts, without the underlying uneasiness that is creeping up on me. Comparing the side effects of steroids at low dose, and the 2 tapering drugs would suggest that steroids are a much better choice, and I feel much more comfortable with that. But I will read more on the options. Thank you again.

[PMRpro Ambassador in reply to Temoral]

Some rheumies present MTX and TCZ as wonder drugs - but they aren't/They don;t replace pred entirely and they don't cure anything either.

I've been on TCZ for nearly 3 years now - and still need 7mg pred or the bicep tendinitis of PMR comes back. I have been lucky so far with no adverse effects and it got me down from 19mg - but SheffieldJane hasn't been so lucky with diverticulitis.

[Temoral in reply to PMRpro]

This is just what I think...I would rather do incredibly slowly...without other spares if I can slip down to 5...or even 4. Thank you.

[Blearyeyed in reply to PMRpro]

Exactly, in fact the slower taper often ends up reducing the amount of flares while the condition is Active and then speeds up recovery and the potential of getting to Zero Pred much earlier. Rushing through the doses via a " one size allegedly fits all" timetable rather than dosing in relation to the activity of PMR/ GCA and the patients individual health history and needs is totally counterproductive.

[PMRpro Ambassador in reply to Blearyeyed]

Not sure it gets you to zero pred much earlier - you'll need pred as long as the disease is active, possibly a few months I suppose. But I'm pretty sure it saves on the cumulative dose, And you feel better getting there.

[Firstviolin in reply to PMRpro]

I am very interested in this information. Having transferred from a private rheumatologist in September to my local hospital public rheumatology clinic (with support and advice from this site!), and having been on both Tocilizumab and then Methotrexate, despite telling the consultant that I had extensive diverticular disease, the hospital consultant considered putting me back on Tocilizumab until she had a consultation with the rest of the team. She came back to me within a few days and said that they would not put me on Tocilizumab because of the diverticulosis. Since I started treatment with Tocilizumab my diverticulosis has got dramatically worse and I now have been advised that I have to take strong laxatives to clear my bowel effectively. I get so fed up - it’s one thing after another - constantly. Now I’m worried that taking a laxative might affect the absorption of the prednisilone - now on 5 mg.

[Temoral in reply to Firstviolin]

So sorry that you have got on this 'not so merry go round' of drugs. This is exactly my fear...so thank you for sharing your story. I hope things go more smoothly from now on. 😊

[PMRpro Ambassador in reply to Firstviolin]

I'm not surprised - are you still on the TCZ? Some with a history of diverticulitis don;t have problems but I suspect the majority would sooner or later. I assume you have stopped the TCZ and now will have to sort out the diverticulitis?

SheffieldJane may have some suggestions as she has a similar problem.

It depends on the laxative. If you take the pred and nothing else for a couple of hours, it should be absorbed from the stomach in that time. If the laxative you use speeds up transit time from the stomach, it needs to be delayed for that time. If you are using the sort that only have an effect in the lower gut with bulking the stool and/or pulling water into the colon that shouldn't affect the events in the stomach.

my.clevelandclinic.org/heal...

What do you usually use? What are they suggesting you use?

[Firstviolin in reply to PMRpro]

Thank you! I haven’t taken Tocilizumab since Mid June and I only took the MTX for about 6 weeks after that. Then I transferred to the hospital. The type of laxative I have been prescribed is a lactulose oral solution so that should be all right then! I take it at night and the usually on an empty stomach somewhere in the middle of the day. So the Pred should be well absorbed. Also I should say that I had diverticulosis already, but it didn’t bother me much until the treatment of the PMR began. It is SO reassuring to have this forum. I will make another post shortly about my experiences with medics who know very little about PMR but I don’t want to clutter up this thread with irrelevant material!! Thank you all and a happy and healthier New Year!

[PMRpro Ambassador in reply to Firstviolin]

That is a risk if the patient already has diverticulosis - but once it has turned to diverticulitis (it doesn't always) I think it is a big risk. diverticulitis is not nice.

[sidra1968 in reply to PMRpro]

Question for you, Pro..is methotrexate bad for diverticulitis/osis? I had one major "itis" episode, not fun. I have been offered methotrexate, but have not taken it yet. After seeing that new study, decided not to. Thank you.

[PMRpro Ambassador in reply to sidra1968]

Not sure - don't think so although MTX can cause microscopic colitis which is different. You would have to ask a gut expert.

[sidra1968 in reply to PMRpro]

Ok, thank you. I am probably not going to try the MTX, regardless. Just thought that might give me something else to say to them...but ultimately they cannot make me take it. Have a great day!

[Temoral in reply to PMRpro]

Thank you. I am not in a rush...just want a peaceful journey...Happy to stay n 5mg really. 👍

[Smithie49 in reply to PMRpro]

Morning PMRpro. Very very chilly here 😞. Is there a reason why we aren't prescribed leflunomide rather than methotrexate as a steroid spare? The paper in Rheumatology Advances in Practice (fairly small study sample) published in Atcham last year found it much more effective.

[PMRpro Ambassador in reply to Smithie49]

I wouldnt go so far as to say it is MUCH more effective - even though the original paper by Dasgupta in 1999 claimed it induced remission in 21 out of 23 of the subjects. It is used - depends on the rheumatologist really. There are a few on the forum and I posted a piece on behalf of a friend in the Scottish PMRGCA charity who found it worked for her but developed neuropathy.

healthunlocked.com/pmrgcauk...

There was a study ongoing in the Netherlands using it but Covid got in the way. Have you got a reference for the one you mention?

It is a bit rough on the side effects front though - lots have awful GI problems.

[Smithie49 in reply to PMRpro]

Many thanks. It was Vol 8, Issue 2 , 21st March 2024. It was a revue of research trials so the one you've mentioned by Dasgupta was probably the one used to get the figures for the effectiveness of lef. It just raised my hopes as methotrexate is not helping me reduce at all!!! 4 flares this year each time I tried to taper (very tiny 0.5mg pred at a time) from 7mg. So back where I started even though the rheumy increased the methotrexate dose to 20mg a couple of months ago. I'm seeing her next week so that'll be interesting. I've had one sided neck/shoulder pain since June that she wants investigate.

[PMRpro Ambassador in reply to Smithie49]

It is interesting - except they seem to have used a very low dose of MTX and admit that in the paper:

"A limitation of the current study is that we considered the starting dose of MTX but not if, during follow-up, adjustment of such baseline dose was required; this is highly likely, especially in those patients with a chronic relapsing phenotype. The use of MTX in doses currently used for the management of RA (up to 25 mg/week) has not been formally studied in PMR. Interestingly, we found that when MTX dose was > 15 mg per week, GC discontinuation was achieved more frequently."

A dose of 10-15mg MTX is really unlikely to achieve much and most patients in Europe would be STARTED at at least 15mg and 20-25mg per week as used otherwise in rheumatology would be usual.

[Viveka]

Interesting stuff, fellow traveller. As you know I am in a similar position with Tocilizumab on the horizon because I have flared badly twice last year due to GCA reacting to a virus and IBS. I have become more reluctant to try this given the reaction of my dentist. I have a grumbly compacted wisdom tooth and he told me once on TCZ there is no way he is going anywhere near my mouth. Another factor to consider if you have any dental issues.

Is the GCA controlled on 8, if so not sure about the need for TCZ if you have worries about side effects. Personally I would not consider TCZ if my flares were only taking me up to around 10mg, and even though the last took me to 20 I am going to give it another go at reducing pred. Perhaps year 5 is the cure!? You need to decide what is best for you. If you are happy to stay with pred for now, stick to your guns, but show appreciation about the potential for TCZ in future just in case. I wouldn't mention that you are happy to stay with 5mg - just that you feel a slow taper is the best option for you at the current time.

[PMRpro Ambassador in reply to Viveka]

"he told me once on TCZ there is no way he is going anywhere near my mouth."

That is something I have never heard - are you sure he isn't confusing it with a bisphosphonate? My dentist only insists on using antibiotic cover for anything invasive with TCZ - he is fine about everything else.

[Viveka in reply to PMRpro]

I just told him it was a biologic, not which one. Apparently his wife is on one. He tends to be dramatic. Thanks, I will check. X

[PMRpro Ambassador in reply to Viveka]

And possibly therefore, extra risk averse ...

[Temoral in reply to Viveka]

Hello again Viveka. I also feel that my flares had a trigger...like a Covid jab, a bout of flu, family stress, ....and each time I returned to 5mg, it was blissfully easy to actually live with small niggles, rather than feeling wiped out when encouraged to drop to 3. I even went on holiday on 5 and felt really good. Your advice is spot on for me! Reduce back to 5mg, as the Rheumy advised, then thank her for all the tests and express my preference to stay on that dose for a while, to rest and consider the option of interventions in the future. Thank you very much. Our bodies belong to us, after all, and we have to live in them. Stay strong on your journey. X

[PMRnewbie2017]

Your comment, 7 wobbles of which 4 true flares reminds me of a conversation i had recently with my Rheumy. There was a student present so i took the opportunity to explain that in my opinion, backed up by 7 yrs of this, a distinction should be made between a true flare ( increased disease activity accompanied by increased levels of IL6) versus over shooting one's optimal dose to balance out the amount of inflammation produced daily. It took a fair bit of explaining for them to even start to understand what i was saying. They considered that any need to increase Pred dose was a flare and that meant relapsing PMR, and relapses meant add other drugs.

[Temoral in reply to PMRnewbie2017]

Oh gosh...this is such a clear and wise explanation! 'Overshooting the optimum dose' ...May I quote you on that in my review appointment? Really helpful for me to try to explain to the 'experts'. Thank you so much. And wishing you renewed strength for the next part of you Rheumy travels.

[PMRpro Ambassador in reply to Temoral]

See my reply too!

[PMRnewbie2017 in reply to Temoral]

You are welcome to quote anything I write . I developed PMR and unconfirmed GCA seven years ago. As a Pharmacist I understand the physiological mechanism of the illness and the pharmacology of the treatments. Thanks to our Peers here, have learned loads in addition to doing my own research too. An excellent description is to use PMRpro's dripping tap analogy. That really "paints a picture".

[PMRpro Ambassador in reply to PMRnewbie2017]

I mean I know I did more physiology and you did far more pharmacology - but why are doctors often so dense about either? Their pharmacology knowledge, or lack of it, is scary. My grandson is now a hospital pharmacist and gleefully described his purpose as the ward pharmacist as being to identify doctors' bloopers withdrugs - suitability, dose and interactions ,,,

[PMRpro Ambassador in reply to PMRnewbie2017]

Just been talking about that with Prof Vanessa Quick!! It's a problem with terminology - there was a hilarious discussion with Sarah Mackie, Max Yates, Christian Dejaco, me and another patient - I think Prof Dasgupta was there as well, about the "Rs" in PMR - relapse, remission, recurrence, resistence, recidivism, and a few others. And where did FLARE fit? Like you, I believe there are 2 sorts of flare (and 2 sorts of remission: drug induced and full, i.e. with no medication) - and relapse for me has to be PMR returning well after the patient has got off pred and been symptom-free for at least 6 months which is when you can say the patient is in drug-free remission. If they have a return of symptoms after reducing the dose, that is just uncontrolled inflammation in the existing episode.

[PMRnewbie2017 in reply to PMRpro]

Glad there's a few of us thinking the same thing. I hope Prof D was there too. The podcast from 3 years ago that was posted here yesterday, didn't give me the impression he went along with that idea?

[PMRpro Ambassador in reply to PMRnewbie2017]

Possibly not - though he has changed his tune on a few things in the time I have known him! But he is no longer the biggest driving force on these things - there is a cohort of young rheumies coming up. Though he is very taken with his "spectrum of disease" and if, as I hope, that takes hold, that will change a lot of ideas. I've been banging on about that for as long as I've been involved - I don't see how it can be denied, it was clear as daylight to me as soon as I heard a lecture of his that there had to be something linking cranial GCA and PMR - and it was a vasculitis of some sort (that was my husband's field) so I said so in the questions. His face was a picture.

[Viveka in reply to PMRpro]

How about we develop our own language for the forum in the first instance?

Can't think of elegant words .... possibly 'overshoot flare' and 'increased activity flare' ???

Also, there is 'escape' GCA - where there are intermittent symptoms that aren't too bad, aren't getting worse and eventually settle. Prof Hughes told me about this. It was a game-changer for me. Stopped me worrying about every twinge and throb and thinking I needed to increase pred. Presume this is the case for PMR too.

[PMRpro Ambassador in reply to Viveka]

I suspect so. I take notice of what someone says - and say if I suspect it isn't an overshoot. I was saying earlier today to a rheumy that I think the disease activity displayed graphically would form a sinus wave - the disease activity wanes over time but with intermittent increases. You only really notice if you happen to reduce the dose to a new low when it isn't very active just before it ramps up again. it isn't a simple disease - and there are at least 4 or 5 different manifestations. I still think there are more important things to identify than new expensive medications that the NHS/NICE won't approve - better diagnosis for a start. Though we could do with a few more generic tocilizumab bioidenticals, which would force the price down as has happened with Humira which is now under 1000 euros a YEAR. And then there would be a fair number of patients like me who'd pay to try it in PMR and improve the evidence. It's about half the price it was apparently.

It upsets me when doctors are no longer curious and asking questions - and dismiss patients as ignoramuses.

[Viveka in reply to PMRpro]

I wish there was a way of identifying immune activity in real time.

I think there needs to be more work on what triggers increased activity - most of us are mentioning viruses or operations etc - but it's complicated because at other times you could have a bad virus, for example, and be fine.

(My ears are starting to hiss, which is a harbinger, but I am only on day 2 of 15mg so plenty of time for time for things to settle.)

[Viveka in reply to PMRnewbie2017]

Exactly! It is is absolutely obvious to anyone who has experienced it. In one case you might go up 2 or 3 mgs. The disease trajectory remains the same. The other needs much more pred - the disease activity has increased. These people are supposed to be bright but they just believe the text books or their teacher, question nothing and don't listen to patients. ****!

[Temoral in reply to Viveka]

No further comment...👏😂😉