Feeling the pain (2)

[Carrot1]

This was written by PMRPro in 'Feeling the Pain' post.

there are a few things that present very similarly to PMR and which respond far better to other drugs.

Can I ask what these similar things are please? And what drugs they respond to?

[PMRpro Ambassador]

I was going to list them - but to be honest, this:

uptodate.com/contents/clini...

lists them and explains them very well so I suggest you go to it and scroll down to Differential Diagnosis. Each possible option has a detailed description but if you aren't interested in that just read the headings in bold type.

Then it depends what the underlying cause of the symptoms is. It could be a cancer. It could be RA or another inflammatory arthritis and RA responds to DMARDs far better than to just pred. In RA there is a hierarchy of medications which is usually worked through - everyone responds slightly differently and what works for me may not work for you. Other inflammatory arthritides may respond to one DMARD and not to another, or to one biologic better than to another. The article also suggests that persistent symptoms while on 20mg may be a sign it is GCA you are looking at rather than PMR - though where PMR finishes and GCA begins is a rather blurred line.

Then there are other diagnoses that also respond to pred - but sometimes at a far higher dose, myositis for example. Hypothyroidism can also cause similar symptoms - but obviously that requires thyroxine. And there are other forms of vasculitis - which can be got into remission with chemotherapy.

It isn't good enough to just measure the ESR/CRP and look at the symptoms. That is just the start - before you can plump for PMR as the diagnosis there should be a fair bit of investigation first. The skill is in knowing which blood tests to carry out and how to interpret them.

[Jackoh in reply to PMRpro]

Thank you for this PMRpro.

Dr Hughes confirmed that I had developed GCA on top of PMR last May but have since found it very hard to reduce from 21 mg. I have got down to 18mg twice but have had to go back up again to 19mg because of bad headaches and generally feeling very unwell. My own GP recently said that "I am just going to have to bite the bullet" whatever that is supposed to mean?!! The other GP I saw in the practice got very annoyed at me for being on such a high dose for so long so it has really helped me, anyway, to see that 20 mg can be a sticking point for some folk with GCA symptoms. Unfortunately as we know some GPs for whatever reason can make you feel that you are not trying hard enough or are not bothered enough to drop your dose. To be fair I suppose the one GP was concerned about the number of infections I've had over the winter but again you can't reduce when you have an infection.and you can't stop an infection if you're taking all the necessary precautions. Think I'm still annoyed really with both their comments.

Was a very interesting paper.

[PMRpro Ambassador in reply to Jackoh]

For goodness sake - if that daft GP tells you to bite the bullet again tell him you will meet him in court if you lose your sight! Really - do they tell their RA patients off for still being on a high dose of whatever? I think not. And for GCA patients, pred is their only option. Do they think we LIKE being on pred?

It isn't a year yet. To be round about 20mg is fair enough judging by many people on the forums. And I would tell them that since you are under DrH you will take his word not theirs about biting bullets! Having an infection is small beer compared with visual loss.

I said somewhere else today I hoped some rheumies develop PMR at some point and can't get diagnosed. I'm not mean enough to wish GCA on anyone - but I'd like to meet a few of these GPs who blatantly obviously haven't a clue about GCA. And I'd tell DrH about them when you see him because a stiff letter from him wouldn't come amiss.

[DorsetLady PMRGCAuk volunteer in reply to Jackoh]

So you should be annoyed with your GPs, where do they get some of their ideas from!

As PMRpro says we don't choose to be on Pred, but we have no choice.

[klairv0yant in reply to Jackoh]

Hi! I, too, am having difficulty getting below 20. I've been stuck here since... August, finally went to rheumatologist who has placed me on methotrexate, to aid In the reduction of prednisone. I'm only two weeks in and I've had a tough time with side effects. But today, I feel better than I have in months. Actually wanted to workout, but I won't. Maybe tomorrow a slight walk . So there are ways to not " suck it up" , wow, that burns me, if only they knew the depths inside our core system the pain which is felt. I'll keep you updated. I hope you find relief my but trust yourself, and get another Doc. Psst.. I also have found I'm a magnet to illness which can be 500 ft away!! So, one doesn't necessarily relate to another; I guess I expect, with an autoimmune disease to have more ills in the winter? Call me naive? Hugs and health to you !

[jinasc in reply to Jackoh]

Getting down to 20mg in less than a year with GCA - I wish!!!

You can read this: pmr-gca-northeast.org.uk/st...

And there are more stores on the PMR&GCA Scotland website.

[Jackoh in reply to jinasc]

Thank you Sambucca for the link. It is good to read other folk's experiences. I probably didn't explain myself very well that I had PMR, got down to 10mg and then developed GCA symptoms in the side and back of head. I went up to 21 mg which controlled the head pains but since going up to 21 mg ( about 9 months ago) I haven't been able to reduce lower than 19 mg as head pains return. Thanks for the link though - will definitely read through some of the stories. Xx

[PMRpro Ambassador in reply to Jackoh]

It may well be you need a short period of a higher dose to clear out the inflammation. GCA would normally be started at at least 40mg.

[Jackoh in reply to PMRpro]

Have thought that myself in the past.

[Jackoh]

Thank you both for your supportive comments.

Jackie x

[Jackoh]

Thank you KlairvOyant for your comments and information. Will be interested to see how you get on. Keep us informed. Xx