pain in shoulders and legs

[Calypsocat]

I was on Prednisolone from October 2021 until a week ago. Reducing dose, 1 mg a day for the last month. For 2 months I have had very painful shoulders and my legs are very stiff and achy especially right at the top. If I sit for any length of time I am very stiff and can hardly walk. The pain is quite severe.

I went to my (new) GP and she said to go for an X-ray to see if it is arthritis and that was all. No mention of putting me back on steroids and no mention of seeing a rheumatologist.

I now have a three week wait for the X-ray results. I am taking paracetamol to help with the pain but surely I should have been referred back to rheumatology? What do you think?

[DorsetLady PMRGCAuk volunteer]

Certainly sounds very much like your PMR has flared…..and should have be treated as such.

Could ask -why did you continue to reduce if you were in pain, and not seek help from your Rheumy department? As you say referred back, I’m guessing you were under the care of one… or have you moved, as you say new GP?

You need to discuss again with your GP - and approach the subject of PMR and Pred…16 months is a very quick taper, most cases of PMR last a lot longer than that….

[Calypsocat in reply to DorsetLady]

I did say I thought it was PMR flaring up again but she did blood tests and said they were normal.

[DorsetLady PMRGCAuk volunteer in reply to Calypsocat]

well as we all know that doesn’t mean you aren’t flaring -as you only stopped pred a week or so ago -and they very often lag behind symptoms.

Another chat and maybe a repeat of tests called for..

Good luck

[Calypsocat in reply to DorsetLady]

Thanks!

[DorsetLady PMRGCAuk volunteer in reply to Calypsocat]

..and a comment that PMR can last a lot longer than 16 months! 2-6years …

[Calypsocat in reply to DorsetLady]

sorry I should have added I moved house and new GP. Rheumatologist discharged me to my GP

[Seacat30]

1mg drops also seems rather fast for the final stages on reduction. 0.5mg might be more appropriate if you do go back up and then try to go down again.

[SnazzyD]

Hello , I rather fear you have come off Pred far too soon. Assuming you do have PMR, 15 months is rather unrealistic and your doctor really should know that but some don’t. Some doctors think it should be all over in two years but it’s often more like 5 and for a few even more. The Pred is there to hold back the inflammation while the body carries on attacking itself in its autoimmune upset. It doesn’t cure you and it isn’t the case that you reduce to zero and that’s it. You have to get to the lowest dose that controls the pain which you lower carefully to try not to overshoot what you need until the PMR burns itself out. It is a safety net to give you some quality of life, not the treatment that makes it go away.

How were you diagnosed and what was the history up to the start of Pred? What dose did you start on and how did I it feel?

[Calypsocat]

it started on holiday, I was driving so I thought the pain was from doing that all day. Then I started with headaches and my then GP sent me straight to rheumatology with suspected GCA but they said it was PMR. Started on 20mg and pain had gone within 24 hours. Reducing dose down to 15mg next month, 10mg the next then reducing by 1 mg a month.

[Purpleazalia]

Hi Calypsocat, welcome to this very helpful forum. You might find it helpful to take a look at the FAQs section, especially about PMR flares and slow reductions.

I'm sorry to hear you have a return of PMR symptoms after coming off your pred - you must be feeling confused and disappointed if your rheumy indicated you were fine to continue reducing without taking into account your symptoms.

From what you describe, it was when you dropped from 3mg to 2mg that your symptoms started to return - so ideally you should have gone back to 3mg for a few more weeks before trying again, and perhaps only dropping by 0.5mg at a time from that point.

GPs do manage patients with PMR, but will refer more complex cases to rheumatology, also cases of suspected GCA.

It sounds as though your GP is starting again and carrying out routine tests to rule out other causes of your symptoms - my doctor did this before prescribing pred. Three weeks for x-ray results sounds a long time though - it's a week in my area.

I hope you get the answers and treatment you need very soon.

[Calypsocat in reply to Purpleazalia]

Thanks Purpleazalia, I was a bit shocked when they said 3 weeks too!

[PMRpro Ambassador]

You were never reducing the dose relentlessly to zero come what may. You were looking for the lowest effective dose - the lowest dose that gave the same result as the starting dose did. When symptoms started to reappear that was telling you you had arrive and to stop tapering.

The PMR is not in remission - it is at a low level of activity and you need a small dose of pred to manage it. That is all pred is - a management strategy to allow a decent quality of life until the autoimmune part burns out and goes into remission. You probably need to go back to 5mg for a couple of weeks and could probably drop straight to about 3mg and work from there. But you are not ready for zero pred yet - only about 20% get off pred that quickly. 3 to 5 years is much more usual.

[Calypsocat in reply to PMRpro]

I realise that now but that was the plan of my previous GP I was told just reduce it to zero and that’s that. I don’t feel I can increase my pred without telling the GP and I don’t have enough anyway. She seems to think it is arthritis and that’s what she is looking to prove. I was told I can have steroid injections in the shoulders to help with the pain. It’s so frustrating, I can’t force them to treat me for PMR. Thanks for your advice though

[PMRpro Ambassador in reply to Calypsocat]

No, you can't, but you can usually manage to see a different doctor and if not, we provide the background information that your current doctor appears to be lacking, You are entitled to demand a referral too but being able to put your case to them helps.

[Calypsocat in reply to PMRpro]

Thanks, I will try again. Fingers crossed

[Iamfedup]

I really think your problem is that you have got off steroids far far to quickly!! My friends doctor did a similar thing to him and now he is back to the beginning at 15mg