Steroids upped again!

[birthday1]

Hi Guys

Another feeling sorry for myself post again I'm afraid.

I had a follow-up appointment with my GP last night after having my prednisolone upped 2 weeks ago from 15mg to 20mg. Had my bloods repeated last week and my CRP was 17 and ESR 33 (only gone down minimally from the month before ESR34 CRP20). I am in terrible pain still with all my joints and she could see that I had gained weight since she last saw me and that I was all puffy and stiff everywhere. Anyway....she says she doesn't want to give up on treatment yet as I had such a good response when I was first diagnosed and asked if I would agree to up the prednisolone to 30mg for 2 weeks and then to see her again.

I'm feeling really fed up. I was doing so well and now everything seems so much worse now. I did ask her if this could possibly be something else and she said she didn't know and that if I had no improvement on the 30mg dose after 2 weeks she would have to refer me back to Rheumatology for further assessment. I just feel that with everything else medically I have going on that I am not being treated for the right thing ( I may be but that is just how I'm feeling today). Has anyone else gone backwards before they have seen an improvement or been later told it wasn't PMR and that it was something else completely. I just don't know where to turn. I just cried after my GP appointment last night.

Any advice gratefully received.

[DorsetLady PMRGCAuk volunteer]

Hi birthday1,

Sorry to hear you're having such a tough time at the moment. I can understand how frustrating it must be for you. You haven't mentioned any head pains in this post, does that mean you don't have them any more? If so, then that may be a good sign.

At the moment I think all you can do is up your dose as GP recommends, and see how that goes. But I think you need to be referrred back to Rheumatology anyway.

It is very demoralising when you have to increase the Pred after a period of feeling okay, but these things happen so you have to think of it as just a blip, and start again. It happens to most people at some time, if it doesn't then you've very lucky.

Do hope the increased dose controls the pain, that can be very debilitating I know. You will improve, but sometimes it takes longer than we'd all like.

[birthday1 in reply to DorsetLady]

Thank you DorsetLady for your reply.

I wake most days with a terrible headache but that does resolve and I now have intermittent numbness and tingling down the right temple where I previously had the pain, but the Dr doesn't seem too concerned about that at the moment.

I'm desperately hoping it is just a blip and that this increase goes someway to getting me back on track with things.

Thank you for your kind words.

[PMRpro Ambassador]

It is said that about 1 in 6 people who are originally given a diagnosis of PMR have it changed at some point later on. Overall, about 1 in 6 people with PMR later find it progressing to GCA (which suggests to me, it must be more than 1 in 6 who get a different diagnosis - unless they don't count it if it is GCA).

However - personally I would be a bit concerned about that head ache. If it is there in the early morning and then goes soon after taking your new dose of pred that could be GCA that isn't fully managed by your current dose, which is fairly high for PMR.

I agree with DL - you need to go back to a rheumy. I asked last time I suggested this might not be PMR whether Leeds is too far? Sheffield is also potentially excellent for PMR and closer than Leeds.

[birthday1 in reply to PMRpro]

Wow 1 in 6.....that's quite high!

I'm sorry I must have missed you asking about Leeds, yes for me that would be too far but Sheffield could be a possibility. Like everyone else I guess I'm just keen to feel well and frustrated that I'm not. I have definitely been doing some swearing over the last couple of weeks

[PMRpro Ambassador in reply to birthday1]

healthunlocked.com/pmrgcauk...

In this paper there is a mention of this Professor:

Professor Adewale Adebajo, Department of Rheumatology, University of Sheffield, Sheffield, UK.

[e-mail]

I'm told he is still there, or was a few months ago, and you might imagine he is pretty clued up on PMR.

arthritisresearchuk.org/abo...

[birthday1 in reply to PMRpro]

Thank you PMRpro I will take a look

[Judigardener]

If not Rod Hughes in Chertsey.

[birthday1 in reply to Judigardener]

Thank you judigardener

[PMRpro Ambassador in reply to Judigardener]

Well yes - bit if Leeds is too far (and they are as good as Rod, honestly, they work together in research on PMR) Chertsey would need a real road trip!

[birthday1 in reply to PMRpro]

Yes, Chertsey would be way too far for me

[christine2715]

Hi, I too had to go back to 30 mg for a while and am now down to 21 mg but feeling really ill much of the time. Its a slow process and like snakes and ladders. It does seem as if you are going backwards and it is depressing but in fact its a slow process forwards really. All my best wishes - many of us are in the same boat.