Just wondering!?!

[Lizzery]

I've had PMR now said to be LORA since November 2010, and have had a few ups and downs in the pursuit of getting off pred. Since January this year I've been doing really well, and slowly slowly reducing and at present I'm between 4 1/2 and 4 mg pred, but also take 20mg Leflunomide. My CRP and ESR so far this year have been the best they've ever been, but the last blood test showed them as being on the rise again. I think I've just had a virus in that I had a one sided sort of headache, which when I swallowed I could feel on the right side of my head, together with jaw pain. This has now subsided, but I do have some pain and stiffness at the base of my neck when I turn my head. I'm not certain whether this is just one of those things, and will ease off, or whether it may be best to go back to 4 1/2mg for a while, before trying to reduce again. I haven't been sleeping well so it may just be tension. I do have a blood test appointment next week so maybe it's best to wait for the results of that. It's the old old question I suppose trying to determine whether it's reducing too quickly, or whether it's just the aches and pains of getting older.

[DorsetLady PMRGCAuk volunteer]

Hi Lizzery,

"In the pursuit of getting of Pred" is not the way to look at it - should be "taking enough (but not too much) to control the pain/inflammation".

Your recent troubles may be due to virus but would guess some due to reducing too quickly.

Might be wise to go back to previous dose until test results in, and then take it from there.

Take care

[Lizzery in reply to DorsetLady]

Thank you. I've never been particulalry bothered about getting of the pred, and have learned through all of the ups and downs that the slower the better. It's rather the rheumies keep saying it is the aim to get off pred, and then who knows the Leflunomide also. Even though I've been going really slowly it may be that I should have stayed at 4 1/2mg for a while longer. It's such a difficult balance as you think you're doing ok, and then it creeps up on you again. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Lizzery]

I know it does, and of course you've got the adrenal glands throwing their ha'porth into the mix - plus the medicos nudging you along!

Life again't easy!!

[Klah in reply to Lizzery]

I have found that whatever dose of prednisone I am on that it can be fine, but any increased activity or stressful event can make the dose ineffective. As much as you want to slowly taper, you have to monitor your activities. Hope you feel better soon😊

[Sandy1947 in reply to DorsetLady]

Your posts have given me courage to experiment with dosage. I decreased for second time this past Wed., just have same shoulder and arm discomfort when I wake up that improves during the day but stills let's me know it's there, so I'm staying on it for 10 more days before trying next decrease. Now I realize if it doesn't work I take a detour back!

[DorsetLady PMRGCAuk volunteer in reply to Sandy1947]

Hi Sandy,

Good, that means you are now understanding your illness better and getting some control over it, rather than the other way round!

I won't say total control, because I don't think that's achievable for any of us, but at least now you're confident enough to make your own decisions, and that, hopefully, will make your life easier.

Take care.

[Sandy1947 in reply to DorsetLady]

Yes, I'm building my PMR muscle!

[PMRpro Ambassador]

You can have both you know - and leflunomide doesn't always replace the pred for the PMR if you do have it. What are their grounds for deciding now it is LORA?

[Lizzery in reply to PMRpro]

Hi, I'm not sure why it was decided really, but it was mentioned about 2 or 3 years ago (or even longer) by Dr Kelly, and also the new rheumie I'm now seeing called Dr Myers. I've never been hell bent on reducing for the sake of it, but rather have tried to follow how I feel. I did feel at some stages with the first rheumie that I was being badgered into reducing much quicker than I should, however Dr Myers said when I saw her last just to keep on doing as I was, but that the ultimate aim (but with no pressure whatsoever) was to get off both drugs in time. So we think it's back to 4 1/5 mg or possibly 5mg for me for a while. Thank you.

[Lizzery in reply to Lizzery]

Grr... I think it's back to etc.

[PMRpro Ambassador in reply to Lizzery]

You can edit you know - click on the righthand box with the downward pointing arrow

[Lizzery in reply to PMRpro]

Thank you. Its auto what not that does it, and you think you've checked it, and then you see what you think you've written!!

[PMRpro Ambassador in reply to Lizzery]

Strange concept saying the aim was to get you off both if the dx is LORA. That would be the aim if it were PMR...

[Lizzery in reply to PMRpro]

Umm I have to say it's a mystery to me what they actually think I have, but last rheumie mentioned Dr Kelly starting me on Leflunomide at 10mg in 2012 because of peripheral Arthropathy.

[GOOD_GRIEF in reply to Lizzery]

I'll tell you a secret....it's a mystery to them, too, whether you have PMR or LORA or both.

[PMRpro Ambassador in reply to GOOD_GRIEF]

Or even possibly - neither... Though that is less likely!

[jinasc]

Yes, I would like the answer to that question as well.

Our Rheumatology Nurse told us at a meeting, that Methotextrate is the best treatment for LORA.

Which part of the UK please.

[Lizzery in reply to jinasc]

Hi, Northumberland although I did originally go to Gateshead QE for treatment.

[jinasc]

Go to this website pmr-gca-northeast.org.uk.

[Lizzery in reply to jinasc]

Thanks. I'm a member of the Gateshead group and go to their meetings when I can. Their site has been a life saver when I was first diagnosed. It's just you think you're doing ok, and then every now and then a blip comes along out of nowhere. Thank you.

[jinasc]

See you September 18th...........don't miss it............

[Slosh]

'Scuse my ignorance but what is LORA - I assume the RA is Rheumatoid Arthritis - what dies the LO stand for?

[Lizzery in reply to Slosh]

Hi, LO stands for Late Onset RA.

[Slosh in reply to Lizzery]

Oh of course - thank you.