I stopped steroids rapidly and all PMR symptoms returned - HELP!

[Megasorearms]

Hi,

I have only found this group today so I am really pleased to find ANYONE else who has PMR! I have difficult situation as I was responding really well 25mg of steroids per day, when I developed a CSR in my eye. I have had one before from Stress a couple of years ago and knew this was a risk, but wanted to try steroids in order to prove the diagnosis of PMR and reduce the disability and pain I was experiencing. Now I have had to taper my steroids very quickly, reducing weekly, 25mg, to 20, then 15, 12.5, 10. 8, 5, 2.5mg and now I am on 1mg, Next week I will do one day off, one day on 1mg to finally finish them (9 weks in total to come off them). Unfortunately I have had a relapse with PMR symptoms since I dropped below 12.5mg, so I am now in a lot of pain, very stiff and have limited use of my arms and difficulty getting out of the chair, standing and walking. ( I am still working at the moment as I have been able to work from home, but it is getting harder)

The eye specialist referred me to a rheumatologist in the same Trust as urgent and priority on 5th July. My GP also expedited this and I have been told by the Trust that I am on the urgent and priority list. However, the best appointment slot they can give me is in October at the earliest, so I have decided to pay to see a consultant rheumatologist privately. I can't bear the pain and lack of sleep any longer and he can see me next week.

Has anyone else had to stop steroids so quickly? if so how did you cope with it? what pain killers worked for you? and What alternative drugs were you prescribed for your PMR? I have read about Methotrexate and various '...uzamabs' but i am still unclear what is best and how it will work, as they all seem to be much less effective than steroids? any help or advice or experience in this area gratefully received.

many thanks 😊

[piglette]

Why have you had to reduce so quickly?

[HeronNS in reply to piglette]

I imagine it is the vision-threatening eye condition which was triggered by pred. I'd not heard of it before.

[Megasorearms in reply to HeronNS]

Yes it is, I had it before through stress causing a build up of cortisol in my retina and was told not to take or even use steroids on my skin, However I was in so much pain I convinced my GP to let me start it as a kind of diagnostic test to see if it was PMR and my symptoms improved. of course they did, so she agreed to let me go on it IF i agreed to highlight any eye issues asap. I was on them for 6 weeks and it was bliss - I felt lke me again !

Thanks so much for taking the time to comment, you can feel so alone with this disease x

[HeronNS]

If corticosteroids are out of the question for you, which appears to be the case owing to the retinopathy, as far as I know there is only one alternative. This is tocilizumab, brand name Actemra, which is approved for use in treating GCA (giant cell arteritis, PMR's big sister). I don't think it's yet been approved for treating PMR in the UK but there may be a way you can get it because you can't take pred. Methotrexate is often tried for people who have difficulty tapering their pred, and it does help some with this, but is not a substitute for pred. It appears for some patients to make the pred more effective so they can reduce the dose more easily.

I really hope the specialist can help you.

[Megasorearms in reply to HeronNS]

Thank you, I hope i can get it prescribed by my GO if the specialist recommends it? I will let you know how I get on

[WaltzG]

I have been given ACTEMRA in the UK plus methotrexate since can't take steriods.....I can only get a year of ACTEMRA and I don't know what happens after that. But has really helped so far

[Megasorearms in reply to WaltzG]

Why only a year? is it some sort of guideline or policy?

[DorsetLady PMRGCAuk volunteer in reply to Megasorearms]

NICE policy….

[WaltzG in reply to Megasorearms]

As DorsetLady says only licensed for a year in UK. I've got 6 months to go I have to hope MTX keeps it under control after that 😗

[Loyd]

Oh I do feel for you. I did exactly the same as you have done when Covid struck. The doctor advised me to keep reducing my Pred. I was on around 12mg at the time and had had PMR for over a year. I zoomed down to 3mg and had the most horrific flair and was put back to 15mg which didn’t do much so went back to 20mg which did the trick. 3 years later and two further flairs I am back up to 5mg and will try again to reduce to 3 if I can in the next few months. Not easy! PMR is in control not you.

You have obviously reduced too fast and too much. Have they told you why they want you off them? Seems terribly severe. Hope you get help soon.

[Megasorearms in reply to Loyd]

IT is because th prd has caused an eye problem that could threaten my sight, so no choice really - my GP says 'eyes before aches' which i agree with, but so hard when you are flaring

[Loyd in reply to Megasorearms]

Oh yes you can’t risk your sight. I thought they gave you Pred if you got GCA - really high doses but I must have got that wrong. I so hope they can do something for you. 🤞🤞

[PMRpro Ambassador in reply to Loyd]

Yes, high dose steroids ARE used to prevent loss of vision in GCA, you are correct,

However, it depends on the reason - in this case she has developed CSR, central serous retinopathy and it can be caused by corticosteroids so they need to be stopped.

my.clevelandclinic.org/heal....

[Loyd in reply to PMRpro]

Thank you and Dorset lady for that useful information. So much to learn!

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Well, you’ve come to the right place,…😊

[Loyd in reply to DorsetLady]

Indeed!I’ve got questions myself at the moment and may do a post to ask them.

[PMRpro Ambassador in reply to Loyd]

Have you had a look at the FAQs? It is worth becoming familiar with them as often you will find an answer there.

[Loyd in reply to PMRpro]

I will try that thanks.

[Loyd in reply to Loyd]

Sorry to be useless but how do find FAQs?

[HeronNS in reply to Loyd]

Right under this post, above all the replies, there should be a link to FAQs.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

HeronNS has replied, but it's also a Pinned Post - and have a read of this link -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Loyd]

At the top of every thread, immediately under the post, you will see a box advertising the FAQs, unless you have accidentally Hidden it. It is also listen in the Pinned Posts, at the right on a computer and on a phone scroll down to the very bottom, you will see Related Posts on the way down and Pinned Posts are almost at the very bottom. Always have a look at the Related Posts after you have posted a query - there will almost certainly already be something useful

[Loyd in reply to PMRpro]

Many thanks all! I’m sure I’ll find it.

[HeronNS in reply to Loyd]

Which is why it's useful to include a word pertinent to your actual question in the title of a post. This one for instance includes several words which trigger the rather patchy HU search function with advice about tapering. However adding words related to the actual eye condition might have brought up a slightly different list, (although not necessarily more relevant).

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

You do have high doses of pre for GCA to save sight, but that is not the same as CSR which is what  Megasorearms has , and can be caused by steroids.

[DorsetLady PMRGCAuk volunteer]

I’d agree with eyes over aches having lost sight in one through GCA, but it’s not quite as simple as that, and think GP needs to hassle Rheumy department on your behalf.. and what medication, if any, has he advised in the meantime.

if you haven’t already seen this -

rnib.org.uk/your-eyes/eye-c...

[WaltzG in reply to DorsetLady]

Sorry to hear lost sight .....I also have GCA ...

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

11 years ago, so pretty much used to it now 😊… you just get on with things don’t you….

[PMRpro Ambassador]

The only alternative that works reliably is not available to you for PMR in the UK - tocilizumab/Actemra. Only a specialist can prescribe it - and its use must be justified, It is only available in the UK for recurrent GCA and even then, currently only for a year, NICE claim lack of longerm studies on safety for the limit - they happily approved it for use in RA with no limitations though. It costs IRO £12,000 a year. Hence the reluctance to dish it out to all.

There are a few patients on methotrexate or hydroxychloroquine alone who manage well but those are exceptional cases where steroids weren't an option and the drugs were tried and worked against expectations. There is a paper about hydroxychloroquine which sounds great but is of rather dodgy provenance. Another possible alternative would be leflunomide - it has been used in better clinical studies and a few people are on it but mostly as well as pred,

No painkillers work for PMR pain. I had PMR without pred for 5 years as it wasn't diagnosed. I went to the gym every day Mon-Fri and did an aquafit class after which I was able to move more freely, It didn't do a lot for the pain but once I could move and kept moving the pain did recede into the background more. Sitting against a heat source improved the back pain. I worked freelance from home as a translator so had the freedom to do that.

[Sunnyday365]

I too developed CSR and ophthalmologist wanted me off prednisone but having been on this site for 2 years, I know I needed to taper slowly. I was able to get a shot of Eylia for the eye and have tapered to 2.5 since, and will hopefully get lower. I would ask eye Dr what treatment is available and complications for CSR whilst trying to taper the prednisone in the way this forum suggests, much slower than mentioned. You need to be able to function daily which the prednisone allows. Good luck.

[Megasorearms]

How long ago did you get your CSR and how long did it take to resolve? no other options than stopping asap were mentioned to me, I will certainly be mentioning this to the ophthalmologist, thank you.

[Nancydk]

I cant even imagine what you are going through! I have never experienced that kind of taper but just wanted to send a hug.

[Megasorearms in reply to Nancydk]

Thank you so much 😊 I really appreciate that, it’s so hard !

[CarolF1312]

I have also recently been told I have developed CSR most likely steroid induced. Currently waiting to see eye specialist.

I am a little further down the PMR road. Started 15mg prednisolone June 2020, currently tapering down very slowly from 1.5mg

I'm really hoping the eye specialist doesn't say I need to come off Pred immediately as I'm experiencing quite a lot of stiffness at this level and certainly don't want a full blown flare up of PMR.

I'd be interested to hear comments from any other PMR/CSR sufferers.

[Megasorearms in reply to CarolF1312]

How interesting, I haven’t met anyone with CSR before, let alone with PMR as well so thanks for replying ☺️ it’s really difficult as I was on 25mg when I was told to come off them, hence mine has been such a steep taper, hopefully with yours being so low already it might be able to be slower? I would love to hear what they recommend and we can compare notes! Don’t worry we are all different and as I am sure you know well, just take it one day at a time 🥰

[CarolF1312 in reply to Megasorearms]

My appt. Is 8th Sept. I'll be sure to let you know what the specialist says .

[Megasorearms in reply to CarolF1312]

Thanks, I have got over 6 weeks to wait for my nhs appointment so I am going private, seeing someone next week, so I will let you know how I get on too 😊