Split steroid dose?

[Alberta69]

I am currently on 17mgs steroid for PMR which I'm taking in the morning. I'm finding the pain and stiffness lasts at least 3/4 hours for the steroids to kick in. Doesn't help that RA is also playing up.

I've read comments about taking some in the evening to help balance this out and as I will be travelling to Cyprus on a morning flight next week am thinking of trying this to help cope with the flight and travelling.

I was thinking of possibly 7mgs before bed and 10mgs in the morning. Has anyone found this helpful?

I would add that myself and my GP wanted to continue at 20mgs for a few weeks longer which was the starting dose we agreed (I was already on 8mg plus weekly tocilizumub long term for RA pre Pmr) but my rheumatologist wanted it reduced to 15.mg. Dropped to 18 immediately for 1 week and then 16 as per rheumatologist. At 16 all symptoms returned almost as bad as first so with gp agreement I went up to 17. Slightly better. I'm intending to stay there until return from holiday march 26th. Will be 4 weeks at this level.

Then to reduce 1mg a time as symptoms allow. But at least 2 weeks at each level.

The GP who has seen how ill and disabled I have become since Christmas is definitely more helpful than the rheumy who hasn't seen me recently. Also the GP is very switched on with Pmr and was able to say to the rheumy that the fact my inflammation bloods (crp and esr) were nearly normal were almost certainly caused by existing steroids plus toczilumb causing a false negative. We think rheumatologist is questioning the diagnosis of Pmr but I can definitely tell the difference!

GP would prefer slow but sure reduction and I would agree, especially with all the excellent advice on this forum.

[DorsetLady PMRGCAuk volunteer]

You may find splitting may helps -many do. Usual advice is 2,/3rds morning & 1/3rd later in day.

But I wouldn’t be changing things just before travelling - too much for body to deal with. Leave any changes until you get back.

Two weeks at any dose is not really long enough -it can take that long for you know it’s sufficient before you drop down.

[Alberta69 in reply to DorsetLady]

Thank you for your speedy reply. I also think 2 weeks isn't sufficient time as has been the case with the symptoms returning within days of the lowered dose. Fortunately my GP has left that discision about reducing with me and is willing to prescribe accordingly . Obviously we both want it as speedy as possible but not at the cost of pain and stiffness returning.

I have a few more days before travelling so hopefully I will feel a little better again by then. I leave the split rise until I return. It may well be that I don't need it by then.

[piglette]

Normally people take pred in one go, but some people find taking it in two goes a day works well, it really is a matter of trying to see if it works for you. Your GP sounds great. I had a rheumatologist who wanted me to reduce like there was no tomorrow and my GP said ignore him! I hope you enjoy yourself in Cyprus. I have only visited it once and that was when my plane was diverted!!

[Alberta69 in reply to piglette]

Thanks for the speedy reply. I must admit my GP has been so supportive. It really helps when you get to a stage where you just don't know what to do for the best.

I really appreciated him standing up for me when dealing with a supposed expert but he said he said he had a duty of care to me as his patient but managed a compromise.

The hotel in Cyprus has an amazing indoor pool with easy step access and warm water. Best physio ever!

[piglette in reply to Alberta69]

I love swimming. I am a member of a club with a swimming pool. It has proper steps to get out but they do not start until the top of the water which always worries me a bit, you have to grab onto the rails above and pull yourself up!!

[Alberta69 in reply to piglette]

This pool has 4 lovely layered steps with strong rails so it's really easy to get in and out. I just can't handle the conventional ladders as I had a lot of surgery on both feet when my RA was rampant and caused horrible deformation on both feet.. The surgery was extremely successful but I still have to be careful how I place my feet on steps.

The other advantage of this pool is it can also be accessed from inside the hotel and so I can just wrap up in one of the lovely gowns provided and get back to my room without stressing about getting changed. I'm really looking forward to getting there now. This is our 5th visit and I have always come home feeling so much better.

I used to go to a lovely hydrotherapy pool locally but it never reopened after covid and the local leisure centre pool is too cold. All part of cost cuts.

Still it gives me an excuse to find warmer climes and suitable pools.

[piglette in reply to Alberta69]

I don't think I could get out of a pool with a ladder any more! I think we should have a lot more hydrotherapy pools available. I am sure it would help a lot of people. The pool I go to does provide towels and gowns and a canteen supposedly with 'healthy' food, although I am not sure about their paninis!

[Alberta69 in reply to piglette]

Our nearest golf club does have an indoor pool but apart from the cost of club fees and taxis it's very busy and a few friends who tried it said it so overcrowded it felt uncomfortable.It's unlikely to become quieter as there is a long waiting list for just the pool subscription.

Paninis are lovely as a treat.. And I'm sure the coffee and cakes I'll be having next week won't hurt!

[piglette in reply to Alberta69]

I suppose if you don’t play golf it would be rather pricey. Mine does have a gym I don’t use, but not quite the same as golf! I often have the pool to myself. It is a 25 metre pool so not bad. They don’t do cakes as such but I think they do puddings!

Have a lovely holiday.

[PMRpro Ambassador]

I would stick with your GP who seems much more clued up than you rheumy!!

The splitting can be done by taking 2/3 with breakfast and the rest late enough to extend the effect to the full 24 hours - even lunchtime may be late enough and avoid disturbing your sleep.

Have a lovely holiday.

[Alberta69 in reply to PMRpro]

Thank you. I'm starting to think a week in the sunshine and the lovely heated indoor pool will be a form of recuperation. I rang earlier to book airport assistance and Easyjet were very helpful and even moved us nearer the front of the plane to be nearer the entrance and toilet.

Luckily my GP also agrees about the holiday. I know I've struck lucky with him! He seems to understand we all have different body reactions and need individual treatments. Plus, he took the time to read my notes and realised how well I've been able to deal with the RA and the various side effects over the last 40 years and said I knew my own body best.

Will start with a 5 /12 split and see if that helps. Then to stay 5 at night and drop the mornings to 11 then 10. As I said earlier I will only reduce when I feel I'm ready. I know I have also got RA playing up at the moment so I can't expect to be totally pain free but just being able to brush my hair will be a good indicator. Hubby has been brilliant with taking on cooking and cleaning duties but he's not the best hairdresser!

I'm convinced the sudden drop made things a lot worse. I had started to really pick up after 2 weeks on 20 mg. So dropping to 16 in the following 4 weeks was too much. Especially as I've suspected the Pmr has been there a while. I've had bicep and shoulder pain on and off for at least a year but I suspect my existing drugs were keeping it at bay. I was originally on 6 to 8 mg Prednisolone depending on symptoms but since last summer Ive been unable to stay below 8. Plus, weekly tocilizumub injections.

I've had to stop the injections for the time being as my platelet count has dropped. That's happened a few times during the 2 years I've been on them. I'm not sure how effective they are for my RA but maybe I should stay on them until I've stabilised and decreased the steroids.

It's not been a good start to the year.

I hope you enjoy your holiday soon. You may be lucky as I think the UK weather is due to pick up.

I have found this site invaluable and really appreciate all the time and effort you and the other ambassadors put to pass on as much as possible to help fellow sufferers cope.

[Wizards]

I split my dose because at about 5pm or earlier some pain/ stiffness would reoccur. I split my dose in 1/2, morning and 3pm.

As for dropping I had issues from my 1st drop. I used the Dead slow method and allowed however much time in-between to feel well and make sure my crp was were it needed to be for me.

That could take a couple of weeks to months.

I never flared and yoyo'd by listening to my body. Rest when it's telling you and never over extend or your body will tell you.

2 +yrs off.

[Alberta69 in reply to Wizards]

Thank you for reply. I took a 5 mg dose last 'night and I felt a big difference this morning. I usually go through a basic stretching routine before getting getting up but it's been impossible this last 2 months. But was able to do some of it today.

I agree about allowing your body to decide about reducing and I'm sure the quick reduction my rheumatologist insisted on initially made things worse. My GP started me on 20 and I was responding well to that but by dropping to 16 in 2 weeks I was back to square one. I was supposed to drop again to 14 but luckily my gp intervened and said to up to 17 and stay there until I stabilised. He did give me the option to increase to 18 but I decided not to. But he will support me with a reduction plan suited to me.

I will probably never get off steroids completely as they were the only drugs that stopped severe deformities when my RA was extremely severe. As it was I had several operations to repair the damage caused. I started on them as a permanent low dose of 5/6 mg about 17 years ago as I was allergic to methotrexate and it took several years to get onto biologics.

One thing I noticed was the difference in polymyalgia and Rheumatoid arthritis pain. Both horrible but the polymyalgia seems more debilitating as it affects so much at the same time. I could usually find a work around with an arthritic flare up but not polymyalgia. So I'm taking all the good advice to rest, rest rest!

[Wizards in reply to Alberta69]

I too on my 1st drop had problems, not a complete flare but pains. I stayed put for 2 mos until I felt good. From then on I could only do 1mg at a time with time in-between drops.I stood my ground with my rhumitologist. When she'd say I was good I'd say no, I can feel it and my #'s are high. She'd argue they were within normal. I'd say not my normal. Over a couple of years we got to really know each other and she realized I knew my body. Eventually she'd ask me questions and I'd share research.

Hold your ground and with this sites help you can show research etc.

Good luck

[Alberta69 in reply to Wizards]

It seems that some rheumatologists are sticklers for speedy reduction but come around eventually.My own consultant wouldn't listen last year when I was describing what I now know to be pmr. Even said the bicep a nd shoulder pain was a result of Covid jab even though it was in both arms and I was only jabbed in one!

It will be interesting to see what happens when I see him on July.

In the meantime I'll stick with the GP.

[Wizards in reply to Alberta69]

Good luck on your journey and stick to your guns.

[Sophiestree]

Not sure if this is a repeat as my reply disappeared so apologies if it is. Do you have GCA and PMR? If no, then you could let your rheumatologist lapse and just deal with your GP going forward. They sound much more switched on to me and know you far better. I believe if you cancel 4 appts they automatically take you off the list if you didn't want to say it directly to them. Just a thought. But as I say, not sure that works if you have GCA as well.

[Alberta69 in reply to Sophiestree]

Thanks for your reply. Unfortunately I also have RA and have been under the rheumatology clinic for 40 years and this rheumy for about 15. He's usually very good but I think this time he's miffed that the GP picked up something he's missed. I have mentioned the bicep, shoulder and hip pains in the last 2 clinic visits but he's ignored them as my inflammation blood were nearly normal. I've since found out that the toczilumb injection I have weekly can cause a false negative blood, amongst other problems.

I think I just about coped between the jabs and 8 mg Prednisolone which is my RA treatment.

I'm due a callback from the rheumatology unit tomorrow as the injections had to be stopped as my platelets dropped very low and caused a bad purpura rash on my legs. Again GP saw and diagnosed it with blood test confirming how low they'd dropped. Not direct connected to Polymyalgia but all contributed to feeling very poorly.

Hopefully my consultant will have revised his opinion re speedy steroid reductions as it would appear the toczilumb has been more at fault than the steroids.

I do love the support this site gives us. It makes you feel it's not just you on your own.

[Sophiestree in reply to Alberta69]

That sounds tricky. I can only think that playing the 'I really value your opinion, and was wondering what you thought if I...' route so that they feel it was their idea.

This site has got me through 100% and also made me relax a bit after my initial panic.

Good luck tomorrow.

[PMRpro Ambassador in reply to Alberta69]

"I've since found out that the toczilumb injection I have weekly can cause a false negative blood, amongst other problems."

Not CAN - DOES! No exceptions - I cannot believe how many doctors don't know that!!

[Alebeau]

I too was in that position years ago and splitting my prednisone was a life changer as I became pain free all day and all night.

I am still splitting at my present 5.5 mg/day and it’s still working great.

[Alberta69 in reply to Alebeau]

I did take 5mg before bed last night and definitely woke up in less pain. So I think this may also be the way forward for me.

I'm so glad that I've found this site as most medical sites say it had to be taken in the morning. It's so reassuring to hear how other people with the same illness cope.

[DorsetLady PMRGCAuk volunteer in reply to Alberta69]

We also say take in one dose in morning for most people as per general instructions -but suggest splitting if that doesn’t work for you.

[Alberta69 in reply to DorsetLady]

What I have found strange is that I have been taking a morning maintenance dose of between 5 /6 mgs for long term Rheumatoid Arthritis for the last 17 plus years and it seemed to be working OK then. Although crept up to 8 thus last 2 years.

I was on Prednisolone because of uncontrolled joint deformities and I was unable to take methotrexate. After several (thankfully successful) operations to correct both feet I was put on biological injections which combined with the low dose steroids stabilised me . But I was told to stay on steroids permanently by the same consultant who wants me to reduce so quickly for pmr. He wants me down to 8 before I next see him in July. I'd also like to be at that level but only if I stop flaring.

Obviously I'm aware of the perils of steroids but have personally seen more of the benefits during my illness. They have given me a quality of life much better than I could have hoped for when I was first diagnosed nearly 40 years ago. Life seemed very bleak then.

I think having the RA as well has complicated things but I can definitely tell it's 2 different conditions. My GP and this forum have given me the confidence to say so! As well as discovering new ideas on treatment.

Many thanks for your help

[DorsetLady PMRGCAuk volunteer in reply to Alberta69]

In that case hope the splitting works for you...

[PMRpro Ambassador in reply to Alberta69]

Tocilizumab only works 100% for half of PMR/GCA patients - there are at least 3 mechanisms that create the inflammation, TCZ only works for one of them. I am still on 7mg pred despite TCZ,

[Alberta69 in reply to PMRpro]

I'm beginning to think that toczilumab may not be the drug for me. I have not found it particularly helpful for the Rheumatoid Arthritis and now have severe purpura on my legs and ankles. as a result of a low platelet count.

The consultant said to stop for now and restart when rash and bruising gone. But I think I will ask for a further blood test to check the platelet level is back within normal levels before I re start.

The strange thing is I was supposed to start Humira approximately 18 months but was changed at the last minute. Now he says toceimumab helps IF I have pmr. GP says he has absolutely no doubt it is and he's the one who's physically examined me. Also he was the one who knew crp and esr tests were no good!

I'm definitely picking up at a split dose of 5mg in the evening and 12 mg with breakfast. If this continues to improve I will reduce the morning dose by 1 mg a time until I'm at 10.mg total then reassess. I was hoping to get back to 8 by the time I see the consultant in July but now know I have to allow sufficient time between reduction to prevent a repeat of a few weeks ago when the consultant insisted I dropped from 20 to 16 in 2 weeks. That really set me back.

Between my really understanding GP and this forum I now realise I have to be more proactive and not just accept something that's not right for me.

[Sandmason]

Splitting 20 way the only way for me.

GP wins. They see more PMR than rheums do. One rheum I saw refused me as a patient, he told me I should have gone to an Internist.

[Alberta69 in reply to Sandmason]

Thanks for your reply. I will definitely be splitting for the foreseeable future as after just one night I felt the difference. I only took 5 mgs of 17 which is a bit under a third but as it worked I will stick with the 5 at night and rest in the morning. Certainly while I'm reducing.

There is so much helpful info on this site. It's reassuring that other people have been there and found ways of coping that doctors don't necessarily tell you.

[FraisyBo]

I too have a similar situation. RA for 40+ years and a few months ago accidentally got diagnosed with PMR which responded immediately to 25mg prednisone. I take a Biosimilar of Humira called Amjavita and have taken that since 2003.

Further complicated by a frailty fracture of my ankle,a vertebrae, and spinal stenosis of my lower spine. I had a full blown adrenal crisis in May 24 following the death of my husband.

My rheumatologist who had been away is adamant that I cannot have PMR as well as RA and that because of my fragile bones prednisolone is completely unsuitable for me and in any case as I take 15mg a day the PMR would be under control which is not true as I need 25mg as a base line.

This has left me in a terrible situation as the PMR affects both hips and thighs and knees which are stiff and painful particularly over night and mornings, it improves a little as the day goes on.

My shoulders and neck are stiff also.

The RA has flared up in my knees and feet plus hands and wrists. My consultant Rheumy is doing all the tests again to see if something g has been missed. I am to change my biologic and have another MRI on the base of my spine. To make sure the pain is not a fracture or a myeloma

I wish I had the courage to just up my prednisolone to 25mg to see if it would take all the pain and stiffness away.

Sorry for the rant,

Fraisy

[Alberta69 in reply to FraisyBo]

I'm so sorry to hear what a dreadful time you're having both with heath issues and the death of your husband.I also had an adrenal insufficiency incident over the new year and took it upon myself to up my steroid to 20 until I could get to see a doctor. Luckily I saw a hospital doctor in my gp surgery who then also diagnosed pmr as the trigger and said to continue with 20 until I felt stronger and in less pain.

This worked to about 75% improvement within 10 days and I'm sure had I either increased to 25 or continued a few weeks longer I may have got even better but when she informed my consultant as a courtesy he insisted it couldn't be pmr and said I had to reduce to 15 immediately.

I'm now on 17 as the reduction caused a big flare up. Not quite as bad a before but tit

[Alberta69 in reply to FraisyBo]

Sorry my message, sent early as my rogue arthritic finger got in the way.I really sy

[Alberta69 in reply to FraisyBo]

Sorry my messages going wrong as fingers getting in the way.I really sympathise with your predicament as for most people Prednisolone is a life saver. Certainly from the point of view of giving some quality of life.

Do you know what drug you will try next?, my original biological was enbrel and that was amazing for me for 6/7 years. It was only when I got switched to benapali, a

Biosimilar it stopped being effective. I was supposed to switch to Humira but at the last minute it was switched again to toczilumb.

I haven't found it as effective as enbrel but again the consultant says it's working. He doesn't have the pain!

I also hzv

[DorsetLady PMRGCAuk volunteer in reply to FraisyBo]

My rheumatologist who had been away is adamant that I cannot have PMR as well as RA

Sorry but they are wrong... and some on here will testify to that. But if 15mg isn't helping then yes they are right in testing for other things as well..