Am I right to do this?

[August7]

Having read many of the really informative posts on here I just wanted to ask another question please of you expert souls!

As my previous post I am suffering with quite excruciating ? Sacroilitis bilaterally. I can only hobble around my bungalow and using my walking pole. It feels as if the joints are dislocated which I know they cannot be. However I have read that with both PMR and Psoriatic Arthritis Sacroilitis can be one of the joys.

I have tried hard to get my oral Pred down to 9mg and been on that dose for 2 weeks. I have an MRI booked but no follow up and I know it will take at least 10/7 for that to be reported on. The MRI is for the whole spine so may not pick up this area?

I am not due to see the ANP to be shown how to use Methotrexate in injectable form until March so it is just the Pred till then. The best I have ever felt with the PMR etc was on 15 mg but was intensely told I must reduce as quickly as possible due to the s/e.

Could this be a flare? Or at least adding to the general shoulder pain, rib pain and the new sx of sacroilitis. I am aware however that with Osteoporosis of the spine there could be a fracture or disc problem and the increase in Pred would not be a good idea

Paracetamol does nothing, I did take ibuprofen (I know I shouldn’t with Pred ) basic dose of 400mg and a very slight edge off the pain. Bloods wise all I have been told is my Monocytes ‘are a bit high but acceptable’ 2.20 when normal range 0.2-0.6 and CRP starting to rise again…..

ideally I would like to see the Rheumatologist but waiting for an appointment.

Long winded explanation but I wonder if I should up my pred (even though I do not want to give in) and then taper down as I have seen advised prior. Really just to eliminate any adverse effect of flare that could be contributing to current sx ..

And thanks, because for the first time I don’t feel I am alone fighting on all corners. Means a lot🌈x

[PMRpro Ambassador]

The bottom line is that you need enough pred to manage the symptoms - if you are on too little, the inflammation escapes. It is all very well them telling patients to reduce the pred but that then often leads to the patient being unable to function.

Nothing has changed from what we have told you in the replies to your previous posts. WHY were you told you must get down from 15mg? Having a blank moment s/e??????

[August7 in reply to PMRpro]

The GP told me I needed to reduce due to the Osteoporosis of the spine but I’m not convinced he even believed I had PMR. The Rhuem indicated that at 10mg (after a year of sx) was too worrying for the s/e profile and addition of PsA, hence the Methotrexate. There is absolutely no follow up re: GPs, more or less get on with it.

[PMRpro Ambassador in reply to August7]

Instead of forcing you to reduce the pred and bear the return of symptoms - they should have you on appropriate medications for the osteoporosis. But they really need to get their act together - if they want to add MTX, it could have been done ages ago and maybe helped the reduction process. And administering the s/c injection is hardly the stuff of getting a degree! Took my rheumy nurse about 5 mins to show me how to do the Actemra jab which is much the same.

[August7 in reply to PMRpro]

Re: injection totally agree, it’s not rocket science.

Maybe I’ll put the Pred back up to 10mg and see if that helps any, and the MRI should at least rule out any vertebrae fractures.

Thanks as ever for your thoughts and ‘Ciao’ …since you’re living the Italian dream. Not jealous at all..😊

[PMRpro Ambassador in reply to August7]

Probably not the Italian dream you envisage!! Halfway up a mountain in a ski resort ...

[August7 in reply to PMRpro]

Some view tho…and a quick shimmy down😉

[PMRpro Ambassador in reply to August7]

Not much shimmying by me any more!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Really?? 🤣😂

[PMRpro Ambassador in reply to DorsetLady]

Not down a ski piste at least ... 😕

[August7 in reply to PMRpro]

The mind boggles….🤔😊

[Tappo in reply to August7]

I would put the pred dose back up until you get definitive answers and the methotrexate sorted out. Just tell your GP that your current situation is intolerable and it’s about quality of life and managing the risks that immobility causes through extreme pain as well.

Sounds awful and I hope you get some answers soon 🥰

[Lovesport in reply to PMRpro]

I guess sometimes we have to be told again and again. I so completely agree with you though about this insistence by professionals to come down as quickly as can be. As if we want to be on large doses anyway!? That is what has been so helpful to me from this forum- trying to fight on and be brave etc. - we don’t have to suffer so much.

[August7 in reply to Lovesport]

You are so right. I just spoke to a Gp and he advised that with the sx to go back up to 10mg (I’m on 9). To contact them if doesn’t work. So the guidelines not being used.

[DorsetLady PMRGCAuk volunteer in reply to August7]

But guidelines are only just that-not set in stone.. and open to interpretation. First suggestion actually is to go back to previous dose…. to see if that works.

[August7 in reply to DorsetLady]

I will do that Dorset Lady. Makes good sense.

[August7]

Thanks for your reply. It came just at the right time. Haven’t slept, pain now in L.hip and couldn’t weight bear initially, very scarey and pain off the scale. Add into the mix back, shoulder and neck I feel a flare is here. Despair as I am not this moaning person so I thank you again and hope your holiday is sunny, bright and restorative. x