Lorna Neill is a leading member of the Scottish charity, taking her turn on their Helpline, and heavily involved in research in PMR and GCA alongside Prof Sarah Mackie in Leeds. This is her story of using DMARDs alongside pred for Long PMR which I am posting for her:
"I have a longstanding (13 years) relapsing form of PMR. Initially I responded adequately to 15mg prednisolone but soon found I was unable to reduce below 12mg without relapsing.
After a few months of this I was referred to a consultant rheumatologist. Returning to 15 mg and a very slow (0.5mg per month) reduction schedule made little difference so, after about a year, I agreed to try my first DMARD, azathioprine. After three months, and before it had time to have any noticeable effect, my liver enzymes had risen too high and it had to be stopped.
I returned to pred. alone but still needed more than 10mg for what I felt was inadequate control in that I was never totally free of pain and stiffness and of course had become cushingoid in appearance with quite disabling tremor, though no more serious steroid side effects.
I then added methotrexate. Unlike many, I had absolutely no side effects but after two years was still stuck at about 8mg and had had a number of bad flares whenever I tried to force a reduction to a lower level (I thought I was maybe just being a wimp) no matter how slowly I approached the taper.
I returned to my consultant and asked if there was anything else I could try. We decided on leflunomide and, after coming off methotrexate which took a month or two, I started on 20mg. along with, I think, 8mg pred. Nothing happened for about six weeks when, over the course of a weekend, I was aware of a magical change. From being ‘better but not good’ on steroid alone I quite suddenly felt well. Everything worked, with none of the feeling of ‘walking with someone else’s legs’ or background aching. I had slightly increased bowel frequency but this was not enough to be a problem and became less as time went on. Without any effort I found I could taper pred. at a rate of 1mg/2weeks. Unfortunately, some months later, I developed symptoms of peripheral neuropathy. This was dealt with by reducing the leflunomide dose to 10mg - which proved to be too low to control the PMR, as symptoms returned. I went up to 15mg which proved to be the ‘Goldilocks zone’ for me because PMR was controlled but the neuropathy reduced to low acceptable levels.
I reached zero prednisolone with no problems and remained on the LEF alone for some five months - at which point PMR returned with a vengeance.
Going back to both pred. and LEF got things under control again and I was maintained in drug-controlled remission on 15mg LEF and 5mg pred. Stopping LEF for two weeks due to a persistent UTI caused a temporary but not serious return of PMR symptoms, and short fibre neuropathy has been confirmed by a neurologist.
I have now had the longest ever period of being symptom free from PMR with a side effect which I am prepared to tolerate while watching out for any worsening.
Recently, another required stoppage of LEF due to a bowel infection has caused a major relapse so that it seems that I can not be controlled on either LEF or pred. alone but need both. As soon as I am allowed to I shall return to this stable, for me, regime where I feel normal."
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Thanks - very interesting. You would need careful monitoring to get the relevant dosages that suited your individual needs. The research is very helpful but I wonder if our medical practices would be up for it if generally implemented
I’ve enjoyed meeting Lorna at some of the Scottish events. I found her reassuring and informative in my early days of PMR. It’s interesting to read her story in full. She’s obviously one of the ones with long term PMR with no discussion of trying a biologic. I’ve now been on Etanercept (Benapali) for just over a year and it has allowed me to reduce to 3mg - I still do slow tapers. I’ve no idea what I ‘officially’ have but at the moment it’s being called Polymyalgic onset Inflammatory/rheumatoid Arthritis - basically covering all bases . I’m happy as I’m pretty much pain free, until I do too much exercise and the muscles ache! Still don’t like being in all the drugs though…..
Interesting - since the anti-TNFs are discouraged in PMR. Adds weight to my belief that the greatest unmet need is not a new drug but an accurate diagnostic test.
Over my 7 years of this I’ve tried hydroxychloroquine and leflunomide but neither has any effect until I tried Etanercept. I’ve no idea what that all means but I know how it has made me feel and I suppose for all of us that’s all that matters, finding that pain free zone. I’ve been ‘lucky’ my GP and my rheumatologist have been very happy to listen to me and experiment within reason!!
Which makes me think it's probably worth trying as just everything the 'experts' reckoned they knew about PMR has turned out to be wrong! I'm thinking like the 2015 guidelines put together by a committee and not agreeing on anything
That diagnosis does cover all bases. My rheumy had inflammatory arthritis on my blood tests until the last one when it became rheumatoid arthritis. Only on MTX now and I've reduced to 10mg weekly. Still hoping to get off that as well although last visit she said people on MTX don't usually get off it. I thought I was only on it to get off the pred.
That is the case for PMR - which isn't an inflammatory arthritis. If it were, the chances are that we would be allowed to have tocilizumab/Actemra since it is approved for RA and for an unlimited time.
Seems like they are trying to be very clever and think outside the box , they can try the Biologic for the RA so leaving the diagnosis " open" , but have chosen one of the options that is lower down on the list of choices that can be used for both GCA and RA and other inflammatory issues like AS too.It would be interesting if you could post your progress story as you go on , to help add more patient evidence to the potential of using biologics for PMR , not just GCA.
The use of anti-TNFs has been actively discouraged in the past because of the lack of effect and considerable side effects. I think it is like all the DMARDs, they may work for a small proportion of patients but it all takes time and there is no way of predicting who will benefit at present.
Exactly , plus the cost is prohibitive for them to be willing to try things out and see with the Biologic in comparison to a DMARD , so it's highly unlikely that they will get better evidence or results on what works more often and what doesn't for some time to come , unless it's being used on people with PMR and .....( Add your own option!).It does appear from what I've been reading on the forum and elsewhere recently they may be better trying the use of Leflunomide first rather than MTX , as it seems like people are tolerating it and finding it more useful when it is offered than they do with the standard offering of Methotrexate.
Plus having a bad reaction on MTX often puts people off trying other options for some time after which is a shame .
Which seems to add evidence to my belief that they should really take more time and interest in studying what side effects people have had in the past when taking other drugs , and really intensively looking at people's previous medical history for recurrent acute minor issues and a person's general health level and diet to make any useful changes before starting a new drug which is known to cause such issues.If you have IBS -D , for example , or have a history of suffering bouts of diarrhea from various foods or drugs it is far more likely that you would have this common side effect on a DMARD too and may need a gradual controlled introduction of the drug rather than just diving into the new regime , even if it would take longer to show that the drug was having the appropriate effect or require a short break from tapering the steroid while the new regime is put in place.
Just starting a drug at a high dose which can effect your body in many different ways without taking the opportunity to get the body ready for it, or tapering the dose up to the one required, is often the root of these reactive problems . When you aren't taking it to start urgent treatment for the condition , as was necessary with steroids at the start of PMR or GCA , but to modify the treatment to improve drug reductions and pain management, it seems more sensible to take steps that would make the trial of the new drug more successful.
They do seem to be missing a trick which would make all of these treatments more likely to succeed . Especially, as a rapid reaction in terms of side effects , seems to be a very common issue from the way the body responds when your condition comes from an autoimmune or autoinflammatory path.I've been using this method now for a number of years when starting a new medication , and my youngest daughter , the one you know as Grandma , is doing the same , which has definitely sped up the process of her knowing the difference between her having an actual intolerance to the medication or just a hypersensitivity reaction to a new change in the body.
It definitely proves the motto that , "More Haste, Less Speed", works when trying to work out what to use in the medical part of pain management. It can also mean that you work up to a dose that works for you that is often lower than the standard dose they start you on , rather than starting high and then having to taper down.
Obviously, I'm talking about the long term management here , rather than the times when the higher dose for immediate need like when starting the steroids at the beginning of treatment.
They are happy enough to titrate pred down - why not titrate other things up because most of them do have recommended therapeutic doses they are aiming for so it wouldn't be forever
I'm due to start another trial of MTX and will start on a low dose (7.5) for longer next time. If I do it, I'm still hummin and ahing as the side effects from everything have been horrendous.
Thankyou for posting Lorna’s journey. My understanding from it is that the PMR was never completely put in its place by the steroid sparing medications which added their own complications. She seems to have been well supported and advised by her consultant throughout.
It is good to read that the Leflunomide played a part in helping Lorna reduce her pred without major side effects but personally I am not sure I would get the same level of support at a time when GPs are under so much pressure. Is it really worth the risk if in the long term I need two drugs to control the condition rather than one? Still undecided, Chrissie
The DMARDs only potentiate the effect of pred - they don't have a disease modifying role in PMR. It also very much depends on what dose you need - I was permanently stuck at nearly 20mg, Lorna needed to go to that for repeated flares. I agree there is little point adding in MTX or whatever when the patient is reliably below about 8mg on their own but if they are stuck in double figures then it probably is worth considering.
Mind you - I think Christian Dejaco says in the T2T paper there is no documented evidence that reducing the dose of pred results in fewer adverse effects. That was the conclusion the original research on the use of MTX came to - after 5 years, the cumulative dose of pred was down but the adverse effects were the same. Which begs the question - was it really worth exposing the patient to the second batch of adverse effects?
I'm down to 6mg pred from nearly 20mg by using tocilizumab/Actemra. My skin and bruising on my legs has improved dramatically but not sure I could identify much else - though I never noticed much in the way of adverse effects anyway. What was starting to be a problem was I needed increasing amounts to keep feeling well snd even i was beginning to be concerned.
Thank you so much Pro for this detailed account. I share much of your experiences especially with peripheral neuropathy on leflunomide.I feel very STUCK ATM so I'm going to print off your post & show it to my lovely GP in the hope that a similar regime may work for me
Thank you for all the wonderful advice you give so freely on this site.
I have been on Leflunomide for nearly 5 years. 4 years of pred too painful to get any lower than 7mg, Rheumy started me on methotrexate but that pushed my liver enzymes up so had to stop that. Then started 10mg of Leflunomide with 7mg of pred, took nearly a year with both but finally got pred to zero. The only reaction with Leflunomide was awful diarrhoea I persevered after 6 weeks I was fine, then went up to 20mg Leflunomide diarrhoea started again but settled after a few weeks. Had no other reaction to Leflunomide no pain no return of pmr pain, it’s been 5 years now, 2years ago reduced to 10mg of Leflunomide still ok. Saw Rheumy last week we have decided I can take 10mg Leflunomide every other day now, really frightened I might have a flare but feel I need to try reducing.
Thank you for posting this. I have just started my journey with DMARDS after more than 7 years. Started Aziothropine, then had to go off because of some contraindication in my blood. Then on Leflunomide, managed two normal blood tests then LFTs shot up. So now I am off for two weeks, then if Liver tests have gone down I can start back on 10mg every other day. I tolerated it well, just a little nausea. All these blood tests and balancing acts make me think of just staying on 20 mg Pred but then I have steroid induced hypertension and diabetes. Thank you. I want to get off the Merry Go Round now.
I'm only on that because I'm allergic (proper allergic) to ACE inhibitors so was started on Losartan (angiotensin blocker) and bisoprolol instead. Somewhere along the road the Losartan was dumped. I complained about the rash for 3 days and was fobbed off by the ward staff - consultant doing the weekend ward round jumped when I mentioned it to him. It was the second time the ward staff had dragged feet - moral: ALWAYS tell the boss!
I wonder why some are reluctant to accept an allergy. I came out in horrible hives and overall rash the first time I took Alendronic Acid but the rheumatologist still wanted me to continue. I find it hard to breathe on beta blockers andcGabapentin gives me true double vision at high doses. But it’s not anaphylactic shock allergy.. I think they should ask for allergies and sensitivities.
"it’s not anaphylactic shock allergy." - perhaps not yet, but that could change. It doesn't ever happen with the first exposure, it could be the second, hundred and second or thousand and second ...
I have allergies to all sorts of things, some quite severe, but as they are not Ig allergies I can't get any help or support from Immunology. The most severe is sudden overwhelming drowsiness when I am pretty much paralysed and can't do anything for hours. I've learned to manage my condition with H2 blockers (Cimetidine), being on high-dose steroids and avoiding foods and drink that are high histamine but every now and then something manages to get me, eg a cup of tea, or last week I had to take Ibuprofen adn had a bad reaction. Since I've been reducing the steroids the allergies have got worse. See my posts on histamine intolerance for what i learned the hard way. The most interesting thing I managed to find out was that what doctors kept saying were UTIs weren't - it was Interstitial cystitis or painful bladder syndrome, very common apparently with autoimmune illnesses yet GPs know nothing about it
That must be awful. Sorry you have to go through that. I have always wondered if allergies have a role in autoimmune diseases. Many years ago I had allergy skin testing for chronic sinusitis and was allergic to all but two items, things like formaldehyde, bathroom mould, every tree you can think of. I did have allergy shots for a couple of years, which helped the sinuses.
This was a timely and excellent read. There is so much thoughtful intelligence amongst this community and the accumulated wisdom is of great value. I guess that I have been lucky in that all my specialists have titrated me up to a dosage on all my drugs and now down as appropriate, with a little nudging from me. I seem however to be the prodigal exception as usual as i have been constipated on lefunomide 10mg. It may be something else however. I fear at a reduction to 20 mg of pred. from 22.5 I am seeing a reurrence of some GCA and PMR symptoms.
So glad Leflunomide has worked for Lorna. I give another shout for it. I have LVV and soon after diagnosis began taking it alongside Pred. As I tapered the Pred I had to increase the dose up to 20mg once down to 3 mg. Since then I have come off Pred and have reduced Lef through 20mg to 15mg to 12.5 mg and now back to 10mg. I have been fortunate in that diarrhoea has been manageable at all times and now does not happen at all.
I've had a similar journey to Lorna, tried just about every DMARD. Azathiaprine didn't do anything, nor did Sulfasalazine. Leflunomide gave me horrendous diarrhea and bloating which was slightly easier when I split the dose rather than taking it all at once. It caused peripheral neuropathy though, tingling in feet and fingers/hands which I still have a year later and I don't know if it will get back to normal or if the damage is permanent.
I've tried MTX a couple of times but abandoned it because as well as the bowel problems it completely wiped me out with fatigue for 2-3 days out of the week which was no life. My rheumatolgist wants me to try again for a 3rd time starting on a low dose and I can't make my mind up on that.
I've been on Hydroxychloraquine for about 6 or 7 months now and didn't think it was doing anything but I have managed to reduce my steroids from 22.5 to 20 this last month and tentatively going to 18 so it might be helping, there's no way of knowing for sure either way. It has a useful side effect of suppressing appetite which is useful as on high Pred I'd otherwise be hungry all the time. Another side effect on the PI leaflet is that it says it reduces blood sugars but I haven't tested for that recently so don't know. That would also be a good side effect as mine are just nudging the diabetic range around 50.
My cunning plan at the moment is to try and lose a bit more weight through low carb eating, which will hopefully bring down inflammation a bit too, and help me reduce steroids. It's so slow though, we're talking about 1 lb a month. Catch 22, high steroids means hard to lose weight, being overweight means more steroids. Which is why the rheumie wants me to try MTX to get the steroids down. I'm lucky I'm blessed wth an optimistic disposition as this really is a horrible situation to be in and it's hard to keep going sometimes.
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