This is my first post to your informative PMR community .
My story of PMR is really no different to everyone else in a way. Although I do respect we are all very different ,and our management skills of this dreadful disease in unique to each individual. My PMR journey started 17 months ago .
To cut a long story short, following difficulties with the prednisone tapering and constant flare up, a world of pain and misery I was eventually referred to a Rheumatologist. I was prescribed Leflunomide which is a steroid sparing drug to enable me to reduce the prednisone dosage. ( the lowest I’ve managed to get down to is 7mgs)
I have been making good progress and again until recently , I was on a dosage of 7mgs.
Ive just had a ? flare up over Christmas which has necessitated me increasing my dose back to 8mgs.
I’m was bit gutted as I was really hoping that the Leflunomide would be the answer to my tapering problems. It’s a bit of a nasty drug , which can have serious effects on the Liver. Hence fortnightly full blood counts and no alcohol.I’m just interested if anyone else had been prescribed this drug and how they have been coping. By the way I was diagnosed 6 months ago had an with severe glucortisol induced .osteoporosis . I’ve had an Aclastic infusion since. Taking Vit D and Calcium too.
Has any one experienced severe incapacitating muscle spasms?? I had an oesophageal and a deltoid muscle which necessitated a trip to A/E .
I’m querying whether it’s the additional calcium/ Leflunomide that I’m taking which has created a muscular imbalance?? I did go to see my GP following the second muscular spasm episode ,who suggested slow down the Prednisone ( which I knew anyway...)
I would be grateful for your thoughts. Cheers Anita.
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Never mind the pred - he needed to check the blood calcium level and suggest magnesium supplements . High calcium and low magnesium can both cause cramps.
Leflunomide has been discussed for me - I am scared of it, I admit. I have a friend in the Scottish charity who got fantastic relief with it - she says she felt it "kick in" but she then delveloped peripheral myopathy so had to stop - and back to worse than before and more pred (she'd been on methotrexate but could get below about 7mg pred). Tried a lower dose of leflunomide, compromised in the middle. And then had a flare. I can't be bothered with messing about like that, I do fine on the dose of pred I'm on, even if it is a bit high but I don.t appear to have adverse effects and it manages a couple of other things and I can function really well and still drink wine ...
I have been on leflunomide since mid November 2020 and it has been my miracle drug. (I was initially diagnosed with PMR in March 2020 and then given a diagnosis of psoriatic arthritis in November.) I have had 99% reduction in my pain after just 4 weeks and able to taper prednisone from 9mg (stalled on that since July) down to 4 mg so far and still going. I was getting some oral blisters but folic acid and berocca have stopped that but do still get an inflamed mouth and some painless mouth ulcers and a rash. Due to my pain relief I am not considering changing unless my liver tests give high levels. Muscle spasms are partially what sent me off to the doctors as my physio said that it wasn't normal- every session sent me into spasm with the lightest treatment. I have only had one spasm in the last 2 months and I think that was because I was overdoing it a bit starting exercises because I no longer had pain.
Apart from making sure your magnesium and calcium are in better balance you should take Vitamin K2. This is what makes calcium go to the bones, as, incidentally, does magnesium. ncbi.nlm.nih.gov/pmc/articl...
I have certainly had Oesophageal spasms. Painful and frightening. My husband called an ambulance the first time and of course the paramedics took me in for more heart monitoring. I find that keeping calm, sips of cold water and over the counter indigestion remedies head them off at the pass. Only culprits were Pred and stress.
Many thanks for your informative responses. The muscle spasms I experienced were excruciatingly painful. I never want to go down that road again. I’ve taken up the advise from you wonderful people and bought some over the counter Magnesium tablets which I will take on alternate days. I generally take a calcium tablet on days when I feel my calcium dietary intake has been insufficient. The 8mgs of prednisone is just holding off PRM symptoms at the moment. I did have some minor aches and pains around the shoulders and both hips( more on the right side.) this morning. No stiffness however. But as the day progresses, I’m feeling ok and more myself.
The left shoulder is improving daily following the dreadful spasm 3 weeks ago . It’s more off a dull ache in the deltoid muscle on certain movements. This time last week I was still taking all sorts of concoctions to keep the pain under control. I’m intending on ringing the rheumatology nurse tomorrow to let her know about what happened and also ? the imbalance of calcium/magnesium.
I also wanting not to remain on the Leflunomide if it’s not doing the job . Full bloods due tomorrow, so a few decisions to make following the results.
Apart from my lymphocytes 0.7 x e9/L which is quite low. All the otherresults were within normal values. That also included LFTs. I’m not wanting to remain on the Leflunomide as it’s not made any difference to my tapering at this stage. Now being severely immunosuppressed it me rather nervous.
Hi all I have been taking leflunomide for 3 weeks now and started to get chest pains and difficulty breathing anyone else every had this problem. This is the second time I have tried it and same thing happened. Only reason I tried again is because arthritis felt better
Definitely something to mention to your doctor and as soon as you can. Chest pain and shortness of breath are items that should be reported immediately and it has happened twice - that isn't coincidence.
That’s quite weird, and it must be quite scary too. Apart from bruising and gastric upsets from time to time, I doing ok. I don’t like taking it, but doing so , somewhat reduces my risk of GCA.
Chest pain and breathlessness shouldn’t be taken lightly and needs to be checked out if I were you. Take Care.
Thanks for reply I have currently stopped taking it again and have a telephone appointment with Nurse on Tuesday. Just wish that I could find a drug that works for me that was 3rd try
I am very wary of adding another drug - I've had PMR symptoms for nearly 16 years and been on pred for over 11 years. much of that time at over 10mg/day. I am extremely well on pred, I have no symptoms and no identifiable adverse effects - so I am happy enough. I tried methotrexate - awful! Leflunomide has been mentioned but I have concerns about adverse effects as I am a sole carer.
I am the same been on pred for over 3 years between 5mg And 10mg with no major side effects think I might just stick with that for now till I get the leflunomide out of my system as it took a few months to get back to normal last time.
There is a wash out treatment that consists of either taking activated powered charcoal or a drug called Cholestrymine( might not have the spelling correct.) for 11 days. This should rapidly flush the Leflunomide out of your body. I found the information when googling side effects of Leflunomide. There is plenty of interesting medical literature on this topic.
If I were under 10mg I don't think my rheumy would bother even suggesting a so-called steroid sparer. He knows I'd just say no way! I have other stuff to take for atrial fibrillation - one PMR drug that suits me is fine.
They can wash the leflunomide out of your system should they decide the chest pain and breathing problems are too bad.
I've had PMR for 4 years, and Leflunomide (6 weeks on 20mg and so far 7 weeks on 20mg) is the 4th DMARD tried without success.I have gastro symptoms - gastritis, bloating, gas, frequency. I also have what seem to be tendon problems up and down my body - elbows, thigh, foot, ankle, Achilles. I am totally over the whole thing. I see the rheumatologist in 2 weeks but am so tempted to stop right now - it's had no effect on my Prednisone tapering and my CRP is a bit higher than before. The rheumatologist told me to keep taking it because it takes 3 months to work - so I'm guessing it also takes that long for some of the side effects to show up.
"my CRP is a bit higher than before" - which is hardly the idea is it?
I do wonder if the so-called steroid sparers can actually enhance the adverse effects rather than just the beneficial effects. I know it can happen with methotrexate - it happened to me and I thought it was just me until I went looking and found that it is indeed a "thing" and mentioned in the data sheets!!
Lefunomide has been mentioned for me - my greatest concern at present is the GI effects which can be severe! Being tied to being near a loo really isn't practical for me ...
Yes, that's certainly an issue. Going to the loo often isnt fun... The last straw for me has been the tendon inflammation roving up and down my body for no discernible reason...I read somewhere quite trustworthy that Leflunomide can produce tenosynovitis and there certainly is no other apparent reason for this. It's left me pretty immobilised. The rheumatologist has said if Leflunomide doesnt work, he will add in another drug (cant remember the name, it begins with C). I dont think so...
Thank you!!! I will look it up - but I am just at the end of trying ever- more toxic and experimental drugs which have less and less clinical evidence to support them. Prednisone is not good and I've had some bad side effects, but it is the devil I know....
I'm lucky in having few problems with it so far, despite the time. But I know it, know what it does. And that is worth a lot. As soon as you add in other stuff, get into polypharmacy, you have no idea what is going on
How much Prednisone are you currently on ? I am presently on 8mgs. I commenced on Leflunomide at the end of October last year . I was at that time taking 10.5mgs of Prednisone. Since then ( and I don’t think it’s the influence of Lefluomide) I have reduced to 7mgs.
I had a nasty flare up a couple of weeks back so I’m back to 8. I must admit, I hurried the drop from 8 to 7 thinking the Lefluomide would cover the reduction.Alas no... it got that completely wrong. I too , have had gastric intestinal issues. I am prepared to put up with that as long as I can keep reducing the prednisone. This time I will be taking it a lot slower getting to 7mgs. Watch this space haha.
I'm trying for the umpteenth time to reduce from 13 to 12mg. I think my next plan is not going to be yet another DMARD, but just to continue tapering slowly and try to tough it out. Every DMARD brings it's own new problems with it...
If that is where you get stuck - that is your body telling you"not yet". Give it a holiday and then try again in a few months, Toughing it out doesn't work - you just end up where you were.
Yes...unfortunately bottoming out at 12 mg is what prompts the rheumatologist to prescribe another DMARD. I have leg muscle weakness (peripheral neuropathy?), and had a hip replacement because of sudden-onset avascular necrosis. This is in addition to the usual thinned skin, weight gain, haystack hair....I'd give anything to get the prednisone down below 10mg....heigh ho. Worse things happen at sea and the whole Covid thing helps me keep it in perspective 😊
Thank you for your knowledge and willingness to help!.....I was wondering if you have any information about tendinopathy- is it a side effect of prednisone or Leflunomide? I have been on prednisone for 4 years, and have had tendon problems up and down my body since starting Leflunomide 3 months ago- typically it lasts for a couple of weeks in each place and then fades away, to be followed by pain in a different location. So far elbows, thigh, ankle, extensor, Achilles.... I'd really be grateful for any experience or information anyone has about this!
but they say "In this case, sepsis in the tenosynovium and leflunomide therapy are also possible contributory factors. The mechanism for tendon rupture is unclear with the latter – it is postulated that it may be due to an avascular effect."
says "Other side effects include: bronchitis, hypersensitivity condition, hypertension, pruritus, rhinitis, and tenosynovitis."
and under the professional section says
"Musculoskeletal
Common (1% to 10%): Back pain, arthralgia, leg cramps, joint disorder, synovitis, tenosynovitis, arthrosis, bone necrosis, bone pain, bursitis, muscle cramps, myalgia, tendon rupture"
The other question is whether leflunomide can, like methotrexate, increase what are normally regarded as pred side effects since pred alone can lead to tendon problems, especially methylprednisolone (as I know to my cost.) Achilles tendinopathy put me on crutches for 9 months!
Thank you so much for this information. I've decided to stop the Leflunomide...everything is worse since I started it and nothing is better. I had planned to continue till my next appointment in a week, but the only reason for that would be to not annoy the rheumatologist...!😉
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