referral to rheumatologist

[Barnaby2]

I had my phone call appointment with GP today. I have been trying to reduce my prednisolone from 10mg to 9 mg and a lot of my symptoms have come back. I have a very painful shoulder and hip and stiff all over if I sit too long and when I wake up in the morning. Stairs are difficult and I am back to feeling like a hobbling old lady (as my son said -but you are an old lady!-hmm thanks! I am 72 and was previously before christmas very fit and have a horse and a dog.

The GP has had a word with the Rheumatologist as she was going to refer me when she had the results of a blood test that i had last week and they have suggested that I go next week for a steroid injection and then (i think i understood this right) stop the Pred until I see the Rheumatologist so that they can see me without symptoms being masked.

She also said that I have to be shielding because steroids make me vulnerable for Covid19. I have been mostly doing this apart from walking the dog where I am very careful.

I feel a bit worried as to what I am going to be like and how mobile I will be. When I was first diagnosed (?} it was just after Christmas and blood tests did not bring anything definite up so not even sure what all this pain is about but it goes when I am on a higher dose of Pred.

Has anyone else experienced having the injection and then coming off Pred?

[PMRpro Ambassador]

To be honest I'm not in the least surprised at PMR symptoms returning at going from 10 to 9 after barely 6 months.

Before I was willing to stop the oral pred on the basis of an intramuscular injection I'd want to know a definite date to see a specialist. Does the GP think this is an inflammatory arthritis rather than PMR? Do you know what the test was?

[Barnaby2 in reply to PMRpro]

When they did my initial blood tests unfortunately the inflammation one was missed so in the second lot of tests they did this but it showed up nothing as I was already on Pred. I have just last week had two tests -one of them was for inflammation but neither showed up anything again. They did not suggest how long I would wait for the Rheumatologist appointment but GP has spoken to them and this was the suggestion for me to do so hopefully will not wait long for appointment.

[scats]

I'm with Pro. It's taken me four and a half years to get from 15 to 9mg, and for most of that time I have had trouble walking. My PMR seems to be mainly in my legs, perhaps yours is too. Remember pred does not get rid of the condition, only the symptoms. I was offered steroid sparers after 4 years and refused for various reasons. I would give the pred a chance to do it's job.

[Barnaby2 in reply to scats]

I was feeling so much better on 10mg but now I have pain in shoulder, hip and down my left arm. I also get a funny burning type of hotness pain in my feet and hands

[scats in reply to Barnaby2]

I have never had trouble with my hands and feet so I can't comment.

I reached 10 mg quite easily, but could not get lower. Stress has always effected my PMR and I had several stressful life events during this time which caused me to flare. Infact for the first two weeks of lockdown the stress caused me to flare again, but since then I have been able to 9mg in 0.5mg stages. I am about the same age as you and found it difficult not being able to walk well but eventually came to accept walking with a stick, if it meant I could get about. I live about a mile from the sea and my ambition is to walk to it, not easy because it is across country. I'm still trying, this is not a fast journey we are on.

Remember if you stop taking any pred you will be in pain again, is it worth it for a blood test, discuss it with your doctor.

[Koalajane in reply to scats]

I use a stick when I am out walking. I don’t use it in the house but I can still be unsteady if walking on uneven ground or if I walk a longer distance than to the end of my road (about 250 steps)

[SheffieldJane in reply to Koalajane]

I realised today, during my regular telephone catch up with my GP, that I argue the toss with every aspect of my treatment, every piece of advice, every medication offered. I know that I wasn’t like that when it all began 4 years ago. I have learned so much from this forum and the people on it and from reading around the subject. I question everything politely and assertively. I realise from various GP inputs, that they simply don’t know all the ins and outs of our diseases, the latest research findings, even the current treatment protocols.

The GP I have chosen is really up to speed and seems to respect my viewpoint ( he also puts me in my place when I need it). We are having a 3 way video conference ( Zoom I think) with my Rheumatologist ( a leader in this field) my GP and yes the patient me. Together we are going to decide on the way forward and I get an informed vote. It has taken me a long time to get here but it is worth it. The sense of control makes PMR and now GCA much more tolerable. I will be an on- board participant in my own journey towards recovery.

Sorry for going on, a bit born again. But!

a) taking you off Pred so that the Rheumatologist can see what’s going on is just callous and of doubtful value. If either of them spent one day at your level of pain. They wouldn’t dream of it.

b) the steroid injection will help for a little while then wear off. If it didn’t there would be nothing for the Rheumatologist to observe.

c) you clearly need 10 mgs now and to stop tapering.

d) All this is happening far too fast, the disease can last years.

e) you need to understand exactly what your doctors are thinking is going on with you. What condition they might suspect. Whether this makes a painful ordeal worth it. You need to be at least an equal partner in decisions about your body.

Sorry your post just touched a nerve, and then I thought, I would have gone along with that once. Unable to get out of bed, into and out of the bath, walk far, lift my hands above my waist. Fight back. Xx

[PMRpro Ambassador in reply to SheffieldJane]

What a brilliant idea - 3-way consultation! She must be getting into the way with the rheumatology conferences being on-line.

Very good points in your post SJ!

[SheffieldJane in reply to PMRpro]

You taught me to question from the outset.

With Sarah you are pushing at an open door. My young GP is really up for this and it is newish for us all. Some good will come out of new ways of working due to the Pandemic, I feel sure.

[Lochy in reply to SheffieldJane]

So well put SJ. I’ve become a bit like that too but love the idea of a three way Zoom call. Great idea.