I am just back from seeing my rheumy. Interestingly, previously I have seen him as a private patient at his rooms but now we have retired and living on a pension, I decided to go public (I live in Tasmania). Privately, I often had to wait ages but in the public system I was straight in! It probably has something to do with Covid.....
He pronounced my bloods as "marvellous" but I told him I was not feeling well having tapered down to 6 mgs. I am VERY tired most of the time and very stiff. At night I can hardly sleep for the discomfort in my hips and legs. He has prescribed Leflunomide and will see me again in January when, if no improvement, he will consider a biologic.
I have had PMR since May 2017 and, according to the rheumy, also have inflammatory arthritis.
Any thoughts anyone...?
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Louisa1840
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At that level I wouldn't choose another drug over a mg or 2 more pred which is still in the physiological range. And I would also suspect that a lot of the problem isn't the PMR but your adrenal function requiring a bit of time to get up to speed. I would also like to see evidence that I had an inflammatory arthritis - if you do then leflunomide may help, but I'm not keen on stabs in the dark.
I am also thinking about trying lefunomide but am very reluctant. However - my dose is more than double yours.
Because about the most common adverse effect is diarrhoea which can be severe - as a sole carer I must be able to function or we would starve! A friend who otherwise did wonderfully well with it developed neuropathy and a severe tremor.
Oh Poor Pro! I know you have your own problems to deal with but I didn't realise you are also a carer. Yet, you have time to advise all of us so regularly via this wonderful site! My Rheumy said it may cause diarrhea but I told him that I am quite constipated most of the time so it could be a good thing. I can but try and see how I go....... It does seem that all of these drugs have different effects on all of us.......
He fell in January and fractured a vertebra. He has a load of other problems so when Covid appeared and his rehab physio after 3 months in a corset was delayed he has become pretty useless when it comes to practicalities really! Apparently can't even open the dishwasher door 95% of the time ... Can't/won't cook anyway
Hi Louisa. I have been tapering my dose of prednisolone and am currently on 10 mg daily. I was taking methotrexate as a steroid sparing drug and doing ok until it adversely affected my liver results. I was told by my rheumatologist to stop the methotrexate. He called me to say that my recent blood tests showed my liver enzymes have now returned to normal. I have been prescribed leflumonide. I will start tomorrow on 10 mg daily.My rheumatologist wanted me to reduce the pred by 1 mg every two weeks. However, I asked if I could reduce my prednisolone more slowly, 1 mg a month. He was happy to agree. I am being closely monitored by having blood tests every two weeks to check for any changes. It am sorry to hear you have had discomfort in your hips and legs particularly at night. I too have been having severe pains in my right hip, shin and ankle for the past few weeks. I am unsure if it is osteo arthritis or a side effect of the methotrexate or something else. I have just had an x ray of my pelvis, lumbar spine and ankle.
Let me know how you get on with the leflumonide and I will too.
You could just give it a try on the lower dose of 10 mg. Understand your apprehension especially considering your position. I did , however, on the higher dose of 20 mg, have no tummy problems at all. We all react so differently don’t we. You can also stop it, or at least I did, quite suddenly with no reaction.
I'm also in Tassie. Diagnosed with PMR late March this year. Started on 15mg of Prednisolone and now down to 7mg. Not going so well at present. Started on weekly Methotrexate injections late May as I also have Psoriatic Arthritis which has flared up after being in remission for about 12 years. My Rheumy also diagnosed me with Fibromyalgia but I'm not convinced on that. I haven't heard of Leflunomide but will look it up. I thought that since I'm in Tassie I'd make contact and commiserate. Hope you feel better soon.
The PsA flared up about 8 months before the PMR started, so given the time difference I assume the PMR is the correct diagnosis. The PsA had been in remission for so long and when it came back different joints were affected to those in the past. I had MRI scans at that time which diagnosed Osteoarthritis. I did mention to my GP that I had PsA in remission but OA was the diagnosis settled on. Having had several changes of GP clouded things as well. When the PMR occured I was referred back to the Rheumatologist I'd last seen 12 years ago. He agreed with the PMR diagnosis, but disagreed with the OA diagnosis, said the MRI showed PsA. My Rheumy prescribed the Methotrexate for both the PsA and PMR.
The 15mg dose of Pred. worked quite well, some not good days but on the whole 15mg was enough. Now down to 7mg a few days ago and starting to suffer. I was advised to reduce by 1mg every 4 weeks, but have been reading on this forum about reduction methods and may need a slower rate.
This is all quite new and confusing really, have read in the past couple of days that reduction of the Pred. itself can cause muscle pain, fatigue etc, so how to tell if that's what's happening, or is it a flare of the PMR? I've been having night sweats all along, and as the Pred. is reduced the sweats have increased, so maybe that's an indicator of PMR flare?
I have a Rheumy appt soon so will raise these questions with him.
As you're also in Tassie I will try and private message you. But for all eyes - you are relatively new to PMR if you were only diagnosed March this year? PMR's median duration is five years nine months so you're only at the start of your journey!
However, it does sound as though you have some mixed diagnoses and at least some other underlying inflammatory conditions which confuses the diagnoses and therefore treatment of PMR.
You are quite correct when you suggest that withdrawal from Prednisone causes aches and pains etc. The generally accepted rule is that these withdrawal symptoms occur during the first 2 or 3 days of lowering your dose. If the symptoms continue or get worse after 3 or 4 days it is more likely to be a flare of your PMR symptoms which necessitates going back up by say 5 mgs and then coming down after a few days to the last dose of Pred at which you felt comfortable.
In my, non-medical, opinion I would say you have come down too quickly from your original 15 mgs. I started on 20 mgs over three years ago and am only now around the 6 mgs (and struggling with that)
There is no guarantee that mtx will dispense with the need for pred in PMR - don;t care what any rheumy claims. It MAY allow you to get to a LOWER dose - but that isn't the same thing at all.
The idea of the slowed tapers is to make the change in pred dose less dramatic - that is what leads to steroid withdrawal pains. If you jump off the upstairs landing it will hurt - use the stairs and it won't! Steroid withdrawal mostly starts immediately you change the dose and then improves over time. A flare usually takes a few days or more to appear and then steadily gets worse. Increased night sweats are a sign of a flare for me - as are sore wrists and thumb joints!
I think you need to get regular liver checks prescribed? I've been offered Lef. as wellas methotrextae gave me high liver enzymes..and I did get some benefit ..like I could feel my muscles stre gthen (even though I realise this shouldn't be oPMR), but I had other side effects and definitely felt like I had lover problems with the fatigue increased. Then I read that one person died after I dose (I think ) if Lef. for its effect on the liver but most do fine and for some its great. I haven't tried it, But I am in NSW and have for thirty years noted that I get in a load faster and with better treatment in the public system usually... and with better experts too?(but that's probably as I do not know how is good to go to).
I have a full blood screen every 2 months. I have been on leflunomide for more than 10 years. It's beginning to stop working 😥 I have some diarrhoea, but because I take 1 dose of co-codamol daily, it is mostly controlled. I have lost some sensation in fingers and toes, but it is mild.
The discouraging thing for you and for many on here is that I was already taking leflunomide and etanercept for inflammatory arthritis long before I developed PMR. 2.5 years on, I am down to 5mg, starting 4.5mg dead slow, and feeling reasonably ok.
I'm only even considering it because a PMR friend has had superb results with it (besides the neuropathy at full dose!) - but it is one of the things that makes me think that when these so-called steroid sparers work it is because it isn't straightforward PMR. But since my PMR isn't a straightforward version it seems, maybe it IS worth a try.
When I first started taking it, the leflunomide hit my inflammatory markers very hard and reversed my inflammatory arthritis symptoms by about 2 years. I have no doubt it works for that. Maybe the new thinking is to try to reduce inflammation with well-known meds that work, keeping pred specifically for the symptoms of PMR. I don't know, but maybe steroid sparing might be a good thing. I think my PMR is not very active atm, but inflammatory markers have continued highish. Consultant decided to take me off Etanercept and put me on Adalimumab. The drop in ESR has been immediate and continues downwards after 4 (fortnightly) injections. I am quite shocked by how quickly it has worked, so to celebrate, I'm planning to (very slowly) drop to 4.5mg pred. Watch this space and the best of luck to you x
Adalimubab is an anti-TNF biologic. Which really makes me wonder if it is PMR - as they are specifically warned against in PMR. But the spondyloarthropathies that they work in can have a polymyalgic presentation, respond to pred too and may well be misdiagnosed.
I was taking etanercept and had been for a few years, when I developed PMR. It had already showed signs of ceasing to work but we (rheumatologist and me together) decided that while I was going to be taking pred for the PMR it was probably best to stay with it until it seemed prudent to change. It definitely is PMR and I actually had GCA during the first 6 months of treatment, when I incresed pred to 40 mgs. As I have been reducing pred, because as I said before, it seems to be pretty stable at the moment, there are signs of the inflammatory arthritis deteriorating, as well as the massive increase in inflamation after covid-19 - I think that the pred has been masking them - and so a change of anti-TNF, planned 3 years ago before the PMR started, was indicated, if only to reduce the inflammation to the "normal" level.
Hi Pro. see my comment below re "umbrella terms". If only this whole journey was straightforward: diagnosis, treatment - bingo! I dream in vain I fear?
Hi Louisa. I took Lefludomide for about 18 months. I was first prescribed it as I was finding it very difficult to reduce from 18 mg pred without having flares.
I personally did not have any tummy problems even though I was on 20 mg of Leflunomide.
I did find though that I had many more infections, colds and chest infections. These meant that I was unable reduce when I had these infections as I didn’t feel well enough. Unlike methotrexate you don’t have to stop taking it when you have an infection.
For some I believe they have had definite benefits and it is the go to DMARD ( used as a steroid sparer)that Dr Hughes recommends.
I did find though as well as not really moving forward with my decrease in steroids I did develop peripheral neuropathy in both legs. I have no evidence that this was the lefludomide, but it can be a side effect. Therefore with the approval of my Rheumatologist, I came off the Lefludomide and just continued a very very slow taper. This for me, at the moment, anyway, seems the way forward. Let us know how you get on. 💐
No but my neurologist wasn’t convinced it was the Lefludomide. I will never know but as it seems to be going ok very very slowly I will just carry on without it.
It was certainly the leflunomide for my friend - she had tremor, that is what scares me most I think. She had been at 7/8mg pred with methotrexate, got off altogether with 20mg leflunomide but as soon as the leflunomide was stopped she was back to 15mg pred. 10mg lef wasn't enough, they have compromised on 15mg.
I suppose you have to weigh up the consequences. You have had to really go back up unfortunately. If you started Lefludomide and it brought your pred safely down to even 10 mg then would it be worth it? If you have to go up for a flare say 5 mg extra is that much off what you are on now? You won’t have lost out on it? Also would they possibly consider biologics for your LV involvement- the PMR/GCA overlap which you appear to have?
Know it is a big decision but perhaps one to think about very carefully which I’m sure you will.
It's all very confusing isn't it? It seems to be that "inflammatory arthritis" is an umbrella term which covers a whole host of conditions! PMR is sometimes classified as such..........
According to my rheumy I have PMR with underlying Inflammatory arthritis. Is there a conclusive test for that?
PMR Pro talks about "Stabs in the dark" and it does seem to be just that!
One is left just hoping that the drugs supplied WORK because our quality of life is so grim at times! I am hobbling around today hardly able to walk and feeling so old.......
Third day on Leflunomide and no adverse effects so far. I am told it will take up to 12 weeks to show any improvement.
Well, I see the rheumy again in January when, he assures me" I will be a different person because " I am so positive"!? Meanwhile, I will taper as I can VERY slowly.....
That's really interesting, DadCue. I've never met anyone who has been on a similarly long arthritic journey as I have. I was interested to hear of your uveitis - I had a long spell of it some 10 years before my arthritis was formally diagnosed. You're so right about these conditions co-existing. What I haven't mentioned here is that I also have Sjögren's syndrome, which my rheumatologist thinks is primary - yet another condition! My view on the complex interweaving of several conditions is that one has to take a fairly active role in the management of them. Only you know how you feel and what various medications work for you. I am very lucky in that I have had 3 specialists in 25+ years - first I did not like, but I recognised he both knew his stuff and was prepared to teach me and the current who treats me like a partner in my treatment. My gp is supportive and recognises that I can mostly manage my condition alone, trusting that I'm knocking on the door if there's a problem. I wish everyone could have such relationships.
Yes, that is the problem, isn't it. Prednislone is a marvellous relief when the dose is right and it would be lovely to be able to take it for as long as necessary. Although I have only been taking it for 3.5 years or so, I have had several steroid injections in my inflammation career, so I too would like to get off it. That might reverse the diabetes too.
Thanks DadCue. One can but try otherwise there's not much point in seeing doctors is there if we're not going to try what they prescribe? I would much rather not be on any toxic drug - preferring to wrap a piece of rosemary round my head and pray BUT...I need to do what works!!
Love the idea of wrapping rosemary round your head and praying 😅. I'm seeing my Rheumatologist this afternoon and have written a long list of questions prompted from comments on this site. I don't know how the PM function works on here, but haven't seen anything from you Louisa1840. Will see if I can work it out.
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