Can't taper

[Marko666]

Hi, I regularly look at this great forum and have had pmr for 2 and half yrs , it's a real nuisance every time I taper I end up back at 15mg as its the only dose that works my last taper got me down to 13mg for a month then really bad flare now back at 15mg for the last 2 weeks and feeling a bit better again been off work again rheumatologist wants me to try leflunomide? Any advice would be much appreciated kind regards .

[DorsetLady PMRGCAuk volunteer]

Could you give us a bit more info please…I see you are working, but doing what - for example is it a very stressful occupation or very physical - or perhaps both. That could make tapering difficult.

What adjustments in work and private life have you made to accommodate your illness?

How have you tried to taper?

As you have been in this situation for 2 years, is everyone sure it is actually PMR?

Sorry to ask questions-but the more we know the better we can help.

No personal experience of leflunomide, but others will…

[Marko666 in reply to DorsetLady]

Hi DorsetLady , yes I struggle with my job I'm a casemaker and tend to be stood on my feet for 9hrs a day they have given me Mondays off so work 4 days a week and I get a hand if I need to lift anything, I must admit when I can I try to live a normal life but when I get these flares my buttocks hips legs back and neck stop me in my tracks really painful,I'm looking for part time work , so does taking it easier help recovery? I need to work but bending over is a struggle, I do try to taper slowly, my rhumy got me going from 15mg to 12 for 2 weeks then 10 but ended up in agony again, I'm going to go from 15 and reduce 1/2mg at a time say 14 and half for a month then 14 and so on , Thank-you for replying.

[DorsetLady PMRGCAuk volunteer in reply to Marko666]

With your circumstances I think you are very wise to try reducing more more slowly and with tiny steps - here are a couple of examples of slower tapering regimes- in my opinion better than adding in another drug, which may or may not help, but has its own list of side effects…

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Both much of a muchness, just choose which suits you.

No wonder you struggle - long days, with back breaking action most of the time I’m guessing…can you take breaks during the day -or isn’t that possible… and yes it you could a shorter working day I’m sure that would help..good luck with that.

In work and play, you need to give the muscles [particularly with repetitive actions] time to recover - and at the moment that doesn’t sound achievable…

[Marko666 in reply to DorsetLady]

Thank-you very much all makes sense I'm going with a very slow taper and awaiting on a doctors call for a certificate for shorter hours Thank-you.

[Kendrew]

Hi Marko666 Completely agree with everything DL said.

I tried desperately hard to remain teaching in a school nursery, and loved my job more than I could ever put into words, but after 3 attempts to return to work because of episodes of illness caused by my PMR symptoms returning, I had to accept that if I was ever going to give myself a fair chance of getting better, then something else would have to change.

However hard I tried to manage the situation, all the phased returns, reduced hours and lighter duties just didn't make enough of a difference.

I eventually had to accept I could no longer do my job to the best of my ability and took medical retirement.

I was utterly devastated at this outcome, but further down the line I now know it was completely the right decision.

I have all the time I need to really pace myself effectively and I can focus completely on looking after my own health & well-being. I don't have to worry about getting up for work if I've had a bad night and so I don't experience the guilt of letting people down anymore. Stress levels are also insignificant now and life is so much better.

Don't misunderstand me..... there are still definitely times when the PMR throws me another 'curved ball' but I now have the time to sort it out when I need to, and not when I feel I can fit it in with everything else.

Scaling right back on the things that aggravate or trigger the condition will make such a positive difference, and unfortunately, too much physical activity is the main culprit. The more we respect the need to rest, the less chance there will be of symptoms re-emerging.

It's not always easy to make these decisions but for me, my health will always take priority.

[Marko666 in reply to Kendrew]

Hi Kendrew that all makes so much sense unfortunately I have to have an income it's so frustrating and painful, but yes my health is more important.

[Kendrew in reply to Marko666]

I understand completely. Just do whatever you can to scale back as much as you can so you can afford yourself more rest time. That goes for home life & social life too.

Hope you manage to find a regime that works for you.

Wishing you all the best.

[Marko666 in reply to Kendrew]

Thank-you doctor has given me a reduced hours certificate today for 6 weeks so that will help, work won't be happy but I'm looking for something easier anyway .

[PMRpro Ambassador]

I can't add anything to what DL and Kendrew have already said. It is normal for anyone who has to work to need more - and especially when it is a physical job.

[Marko666 in reply to PMRpro]

Thank-you pmrpro rhumy obviously is eager for me to come off steroids but I know its all I have .

[PMRpro Ambassador in reply to Marko666]

Have a read of this

healthunlocked.com/pmrgcauk...

[Marko666 in reply to PMRpro]

Thanks for that was a good read rhumy thinks I don't respond as well as I should on steroids, I will consider leflunomide but not convinced Thank-you.

[PMRpro Ambassador in reply to Marko666]

It is the same with all the DMARDs - they may cause side effects, they may or may not work for you, one will work for a small group, another will work for another but none will work for everyone. But you have to try - first to see if you can tolerate it and then to see if it works for you. Have a low tolerance for adverse effects - if one makes you feel worse or interferes with daily living, be firm and say NO.

[123-go]

Hi, Marko666. You are in a difficult position in needing to work as rest and pacing is so important for inflammatory diseases. However, needs must and you have my sympathy.

I have been taking Leflunomide 10 mg daily for large vessel vasculitis for around 18 months and have had no detectable adverse effects while tapering steroids slowly in small drops at fairly long intervals. The following link contains a Patient Information Leaflet for Leflunomide which you may find useful if you want to know more about the drug:

versusarthritis.org/media/2...

[Marko666 in reply to 123-go]

Thank-you 123 I go on holiness month and am worried about tapering or trying anything else before hand so think I'm going to stick with the pred for now also I hear you can't drink alcohol and at the moment it's my only escape 😀 thank you .

[123-go in reply to Marko666]

I thought about the Leflunomide for 4 weeks before agreeing to take it and my rheumatologist didn’t rush me. However, in my case (aortic involvement) I knew it would be for the best.

Alcohol 🙁! I loved my red wine and thought I would sorely miss it; I did for first couple of evenings but then barely thought about it. I do have a very small glass on rare occasions and my liver function tests have been fine 🤞. Enjoy the month ahead.

[Marko666 in reply to 123-go]

Thank-you, so you would recommend leflunomide in your case ?

[123-go in reply to Marko666]

In my case, yes, I would particularly as a recent PET-CT scan has shown no increase in size of aortic root and things are looking stable. I must add that everyone is different in their reaction to this type of drug but careful monitoring, eg regular blood tests and any other investigations requested by rheumatologist have been reassuring for me personally.

I must stress that you have to weigh up any pros and cons and make up your own mind, Marko. Decisions, decisions!

[Marko666 in reply to 123-go]

Thank-you for your help yes everyone is different I'm so glad things are working out for you I suppose if you don't try you never know , good luck in your recovery 😊

[123-go in reply to Marko666]

Exactly as PMRpro says-don’t change anything for the time being. It’s often the case with me that if I stop mulling things over in my mind a decision presents itself - just like that! Magic!

[PMRpro Ambassador in reply to Marko666]

But don't change anything BEFORE you go away! Only ever change one thing at a time ...

[Marko666 in reply to PMRpro]

Thanks good advice I really appreciate it 🙏

[tempusfugi]

Really sorry to hear of your predicament, Marko666. PMR must be so difficult to handle when you're working full time and, of course, require an income. I shall follow your posts to see how you fare if you do take Leflunomide, as it's been suggested that I take Methotrexate to help me taper but imo that's a no, no for me as it interacts with other drugs, I must take. I wish you well for the future.

[Marko666 in reply to tempusfugi]

Hi tempusfugi thank you for your kind words I did take methotrexate with my pred only side effects were upset stomach for a week that was it but didn't do anything for my pmr so stopped it .

[Missus835]

Hi Marko. I empathize. I too am off work at this time because of pain and brain fog from the PMR/Pred. Not so much the pain as it's fairly controlled. My work is not as physical as yours, but nonetheless involves sitting for 5-10 hours a day (10 hours when I'm good). At this time, lower back issues prevent that. I do emergency roadside assistance from home (which is good), but I need to have a clear head to do it as a lot of data entry and computer involved. Glad to hear you're getting your hours cut back and the tapering will be slower. I had eventually cut mine back to 20 hrs. per week (4 days on/3 days off). Have to go back soon as Employment Insurances runs out mid-August. All the best to you on this roller coaster ride.

[Marko666 in reply to Missus835]

Thanks missus my first day back at work today and they were alot better than I thought they would be have said I can work 3 day week if I need to so hopefully things will change I think pmr reacts to any situation if stationary or physical too much standing goes straight to my hips , all the best for your journey.

[Missus835 in reply to Marko666]

Same with the hips. Don't overdo it.

[Wizards in reply to Marko666]

Hi MarkI read your Bio and I picked up one thing you mentioned. You mentioned you have pain later on when you feel prednisone is wearing off.

I too had stiffness and some pain so I immediately started splitting my dose. I'd take half when I woke and 1/2 in the afternoon around 3pm. Made an incredible difference.

As for working it was impossible. I would be so unreliable because I wouldn't be able to get to work on time, to slow in mornings and went downhill fast in afternoon exhausted.

My job required a fair amount of standing but alot of brain power which I had complete brain fog.

Luckily I was close to retirement so went on full medical leave.

My hat goes off to you and others who work.

Good luck.

[Marko666 in reply to Wizards]

Thank-you wizards I have tried splitting my doses but get on better taking the pred before bed as I need to be able to walk for 7am but yes trouble is it wears off and I'm uncomfortable when I go to bed can't win really , I'm going to cut my hours down to perhaps get a longer weekend for recovery hopefully get a Friday and Monday off let's see and yes brain fog and tiredness with me also all the best wizards .