Experiences with tapering with steroid sparer, GC... - PMRGCAuk

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Experiences with tapering with steroid sparer, GCA and PMR?

Cally55
Cally55

Is the tapering experience with a steroid sparer different from that without? Now down to 9 mg from 14 when started 125mg azathioprine last October.

Just beginning to get symptoms, muscle aches, slightly tender scalp and jaw pain. But i don't feel the usual exhaustion that goes with the territory. Inflammatory markers are slowly rising but still well within normal ranges.

So I don't know whether to stay at 9 for a bit or press on, as I am keen to get off the pred as it is destroying my bones. The family has noticed my new found energy so the muscle problems may be using them more, the jaw and head pains are harder to explain away although I sure the rheumatologist will do so, see previous posts about invisible neck problems!

23 Replies
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PMRpro
PMRproAmbassador

In some people it may be smoother, in some people it may result in being able to manage with a lower dose of pred. But no steroid sparer is guaranteed to do either or, especially, replace pred. Even Actemra doesn't get all patients entirely off pred. Azathioprine has little background - all reports of success are anecdotal.

If the markers are rising that is a sign the inflammation is increasing - and in tandem with the symptoms you describe I would be very wary of reducing further since either alone should be a signal to be careful, both together ... If it were simply mechanical neck problems interfering with blood flow that would be one thing. But that wouldn't result in increasing inflammation.

Cally55
Cally55 in reply to PMRpro

Thank you, I think I shall stay where I am for a week or two, since 9mg is not that much. Next rheumie appointment is in april! I got the marker tests added onto the monthly liver and kidney function tests for the azathioprine.

PMRpro
PMRproAmbassador in reply to Cally55

Good idea

York54
York54 in reply to Cally55

I have ulcerative colitis, fortunately no flares for a long time. I used azathioprine to get me off the steroids then and it worked!! Came off it after a couple of years as my consultant didn't want me immune suppressed any longer. Had 2 years or so then PMR hit me, nearly 3 years in, can't reduce my pred long term , so rheumy has sugges ted hydroxychloroquin. Taking one tab every day till I see him in 3 months and trying to reduce from 9mg, 8 mg at moment. Don't know if it will help but to m trying!!

Have a history of auto immune illness. Starting with UC, then interstitial pneumonitis ( also had pred for that!), uveitis ( steroid drops), now PMR, so throughout my adult life I'm pretty peed off with pred!!

Cally55
Cally55 in reply to York54

Thanks for your reply.

Poor you ,one thing after another!

Interesting, I have gut problems as well, diverticulitis and IBS , although these are not auto immune they have been much better since taking the azathioprine, although this may be coincidental as I have been taking max codeine for vertebral fractures from the unspeakable pred! I see from various internet searches that azathioprine is used for people with Crohns. Whatever the reason I definitely feel better so it has helped with something.

Blearyeyed
Blearyeyed in reply to Cally55

Diverticulitis and IBS are not autoimmune as a primary condition, but many people with autoimmune syndromes get these as part of the group of conditions they suffer from , depending on which part of the body is under attack at the time.

Many people , like myself , are diagnosed early with these conditions , are checked for causes and then it is put down as cause unknown .

It is only later in the course of your autoimmune or autoinflammatory disease when more and more symptoms seem to add in that these will have been the cause for your early , milder symptoms all along. If you are getting some relief for your IBS and Diverticulitis from the Azathioprine , that is likely to have been the cause of your conditions too.

I just noticed you are on Max Codiene , this may actually be adding to your pain issues rather than helping them , especially if your worst pain is just before you need you next dose of painkillers. Codiene based medications become highly addictive because they can cause something called the Codiene Circle , very quickly in your use of it. As it leaves your system , even after a short use , it causes strong side effects of headaches , earaches and stomach and kidney pain in many people .

That's where the addiction comes in , you feel so bad as it's levels reduce you feel you must take more of it , not realising the drug itself may be adding to your pain.

Is it possible for you to try a non Codiene based painkiller instead for a while to see if it makes a difference . My OH found it better to do that change by alternating his pain meds between Codiene and non Codiene for two days , then giving a week on the others to gauge the change . He never goes near Codiene now.

Hope you find the answer and sorry for the long answer, hugs , Bee xx

Cally55
Cally55 in reply to Blearyeyed

I have thought along these lines but I have never been able to get doctors interested. Maybe I should try again.

I did reduce the codeine yesterday and the only effect seems to be the back pain. GP always lectures me about getting addicted. I always take less on days I know I will not be active, I am lobbying for a referral to pain clinic as I think the codeine has less effect as time passes. I can't tolerate NSAIDS and they don't mix with steroids anyway, and paracetamol doesn't touch it. Acupuncture worked for about half an hour what else is there?

Blearyeyed
Blearyeyed in reply to Cally55

Funny what you say about acupuncture , many of us get no relief from it , some of us react very badly to it at the needle sites because of the nature of our autoimmune symptoms.

Massage also isn't great unless it is done in small amounts by someone qualified or experienced to do massage on people with these sorts of conditions . Many of us have suffered the consequences of a bad reaction or flare to massage too.

Heat therapy is quite effective and more medical research is being done on it as a treatment for joint and back pain , those heat bags placed on the area at night or wheat bags do help .

The trouble with Codiene is because its nature is to give you a pain response when you start to come off it it becomes difficult to tell wether the pain is from your actual condition alone or the Codiene withdrawal.

I wouldn't stop taking it entirely if it gives some relief until you have discussed a better substitute with the GP. Are you on any other pain assistant medications like those that numb neuro receptors , they do give certain anticonvulsant and antidepressants for pain if it has a neurological cause , like Amytriptyline or Pregbalin . The GP may consider it but you do usually need to go to the pain clinic to get that sorted properly.

When you go to the GP just tell them your continued symptoms and tell them , firmly but politely , that you are sure you would like a referral to the Pain Clinic to get this sorted out. If they are still reluctant , ask them why , they won't have an answer and may choose to just do it.

If your GO is still unwilling tell them you will need to get a second opinion from someone else in the practice or if there isn't one , you can request a second opinion at another surgery.

We these illnesses getting pain under control is key to your physical recovery and you don't want to have a medical team who drag their feet.

Take care , Bee xx

I have reduced to 12.5 mg of prednisone from being on 15 mg for two weeks . And I am waking up with shoulder and chest/ rib pain, shaking inside and feeling generally awful.

When I reduced from 17.5 to 15 mg I had to back up for another two weeks

My GP is not very helpful really .

Also having to adjust my diet due to newly diagnosed with type two diabetes.

We lost our wonderful son in law four months ago all in all I am feeling really fed up at the moment

Sorry I just needed to offload it somewhere

Cally55
Cally55 in reply to Emerlad_70

Sympathy... I know the feeling GPs just tell you to get on with it. I was doing really well with the steroid sparer then got this awful flu that lasts weeks, just got to the coughing bit and my ribs hurt! This disease is really 3 steps forward and 2 back.

Have you tried a slower tapering? Your reductions seem a bit of a challenge to me.

Emerlad_70
Emerlad_70 in reply to Cally55

I think I will go back up to 15 mg for a while

PMRpro
PMRproAmbassador in reply to Emerlad_70

When did the symptoms start? Was it immediately you dropped from 15 to 12.5? And I'm assuming you drop from every day 15mg to every day 12.5mg from one day to the next?

I'm so sorry to hear about the loss of your son in law - that must be hard for you all.

Emerlad_70
Emerlad_70 in reply to PMRpro

Thanks the symptoms were there from day one of change to 12.5but only slightly 4 days ago I thought I would persevere but it has just got worse. Yes from 15 one day to12.5 the next this is what my GP said I should do

PMRpro
PMRproAmbassador in reply to Emerlad_70

Try something more like this:

healthunlocked.com/pmrgcauk...

DorsetLady also has a version.

It is a big jump going from one dose to the other like that - by spreading the change over a longer time your body doesn't complain as much! Although it is only 2.5mg change, over a week that is well over 15mg, more than a whole day's dose. You would expect to feel stiff and sore if you forgot to take a dose for a day!

When the symptoms start immediately, the same day, and then improve then it is usually in response to the change in dose and is called steroid withdrawal. When it starts after a few days or more it is more likely to be the dose is now not enough to manage the daily extra load of inflammation that occurs in the early morning and eventually it builds up again to a level where it is enough to cause the symptoms. This is especially so if you haven't cleared out all the accumulated inflammation before starting to reduce the dose - and since your GP only left you on 15mg for a couple of weeks I doubt that has happened. Most experienced doctors would leave you at 15mg for at least a month, even 6 weeks. This is an article about a good taper the rheumatology department at Bristol found reduced the rate of flares from 3 in 5 to 1 in 5 patients:

rcpe.ac.uk/sites/default/fi...

Trying to rush the taper almost never ends well, at any stage, and the start is very important. The sinkhole of inflammation throughout the body must be cleaned out well and then you can work on finding the dose that manage each day's new top-up without it overflowing again. You won't be at a higher dose forever so everyone has to be patient, but if you try to go too fast you will have a flare and have to go back up - and in the end you have taken more pred than if you hadn't been in such a hurry.

Emerlad_70
Emerlad_70 in reply to PMRpro

Thank you for the reply and advice will act on it

This is the place to offload , with your friends who understand what you are going through.

I am sorry for your loss .

Unfortunately , grief can affect us all physically as well as mentally , and perhaps the emotional stress you will obviously have been under the last few months are increasing your physical symptoms , giving you something like a flare , it may be wise to wait until your mind and body have adjusted and your symptoms have settled again before you continue reducing .

You can tell your GP this is what you need to do and why and ask for their support and understanding over the next couple of months.

Again, very sorry for your loss , do post in if you ever feel that things need offloading , chatting about your stress or emotional symptoms on here and there causes will help for you to get the relief you need in mind to be able to get on with the recovery in body.

Take care , Bee xx

Thank you very much for your reply

It has been very hard seeing my daughter so broken and knowing. There is nothing I can do to make it easier they were married 31 years, she has four wonderful adult children who are a great comfort to her

I know it takes time after losing two sisters myself, and it is early days yet

But heartbreaking

Take care , it's an adjustment for everyone but the key to making sure it doesn't cause you added physical issues is to try to relax as much as you can , list the positives , and rest , keep calm and talk.

If you need to talk , we are here for you , hugs , Bee x

Hidden
Hidden

Hi Cally

Here’s a snapshot of my Journey with Methotrexate as a Steroid Sparer

I had Methotrexate added as a Steroid Sparer & went from 18mg-9mg by 1mg per month, then from 9mg to 7.5mg by 0.5mg per month but was stopped in my tracks with a diagnosis of Breast Cancer.

18months later l resumed Methotrexate & reduced from 7.5mg to 5mg it then became a bit of an up/down period until the MTX was stopped last August due to raised ALT Levels, l am now back up at 10mg & considering a reduction after l return from France in 10days aiming to get back to 7.5mg

Hope that helps you a little.

MrsN

PS I’m a PMR’er only

Cally55
Cally55 in reply to Hidden

Thanks, I think that I was getting this flu virus when the ease of reduction stopped. Nothing like as horrid as breast cancer but I suppose we have to remember that there are other illnesses about. I shall try again when I sop coughing.

Hidden
Hidden in reply to Cally55

Yes get yourself better first, our poor bodies can’t deal with everything at one. 💐

I just joined your group today and it may be too late fo r more comments. I know that cannabis is helpful for many people about Covid-19 e with pain of MS. (I live in the USA) Dr Sanjay Gupta a neurosurgeon often seen on CNN did a year long study of cannabis. He did 4 or 5 one hour shows on it. The last one had to do with opioids and pain He said that the way to GET OOF opiates was by using cannabis. He showed brain MRI;;s from people on opioids the desstution of certain receptor cells and the the baid of same person weaned off opioids through cannabis. Many doctors here are prescribing the synthetic marionol and many are also prescribing it for pain glaucoma etc. Jas anyone tried it for PMR?

Hidden
Hidden in reply to MsDirecto

Hi. This is a year old post. This is a UK based site and as yet cannabis use is still illegal. It's medical use is extremely limited.

Some people in Canada use it, but few and far between as PMR and pred has little similarity to opiate use or MS. I have no idea where covid19 comes into this and cannabis is not a treatment that is recommended by the charity and certainly nothing I I read about covid19- this far suggests it use would be beneficial.

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