Advice re letter from consultant

[Suffererc]

Could someone explain this to me please .

Previously investigated for autoimmune disease. RF was negative, ANA negative but inflammatory markets up.

Seeing GP tomorrow. Am currently on 7mg tapering to 61/2 with DL system

[MrsNails]

Your Consultant has done a Full Work Up but is basically just giving the results.

RF - Rheumatoid Factor

ANA - Anti Nuclear Antibodies

They test for RF as sometimes LORA ie Late Onset Rheumatoid Arthritis can present like PMR

When they test for ANA Levels they are looking at other Autoimmune Diseases such as Lupus.

Is there any conclusion in the letter as to why your Inflammatory Markers are up other than it’s caused by PMR?

MrsN

[Suffererc in reply to MrsNails]

Thank you for that. No. That was the letter I received after a landline call. He made predictions on the answers my husband was giving him. I am to see the GP tomorrow so she can discuss me being given Methotrexate because they are saying I should be off Pred by now. I am tapering with DL taper and all going very well. I have been down to 5 before but then did something stupid ie over exercising.

[MrsNails in reply to Suffererc]

You are at a low enough dose now to not warrant Methotrexate but I’m stuck up at 12/12.5mg & on MTX but for me in the past it has worked to lower the dose 7.5mg being the most realistic dose l’ve achieved. My previous Consultant (who very sadly died) felt l’d probably be on low dose Pred indefinitely, l long to be back on 7.5mg but at this time it’s just not possible, my Consultant has just recommended an increase in my MTX Dose so yesterday l bit the bullet, so l’ll see how l get on.....

Once you get to the lower dose(s) which you are at now, you have to be even more careful as you are at the levels where your Sleepy Adrenal Glands are not contributing at all..... So anything above your normal day to day existence is extremely difficult as you don’t have any reserves so you will become extremely fatigued & your PMR will flare. I can lay Testament to this 😉

[Suffererc in reply to MrsNails]

I am feeling really good physically, but tiredness creeps in and I have to stop and nap for a few minutes to recharge. I am not over exerting and find everything going quite well. Have bad days too. My GP , I don’t think she agrees with me, she thinks I should be lower. Getting stressed just thinking about this appointment. Was hoping to drag out seeing her so I could be on 6

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

agree with MrsNails, think it sounds like adrenals stuttering.... time and a slow taper will address that - unfortunately some docs just see the dose of Pred and are fixated on that.

[Suffererc in reply to MrsNails]

Ps. So what does this Meths do. Do I stop taking Pred, do I carry on tapering with the DL taper still. How much lower will it get me. 3 months course they are talking about. But just using DL taper I could be below 5 then anyway. And apparently Mwth is not good for your liver?

[MrsNails in reply to Suffererc]

Hi, if you have a look at my Profile, just click my Avatar (photo) & it’ll lead you on to my Profile you can read my MTX Story there, it’s intention is a Steroid Sparer, they don’t know how it works but doesn’t suit everyone.

Yes it can affect your Liver & it had mine but it’s now back to normal. You have monthly bloods tests & if the levels raise they stop the MTX either for a short time or indefinitely depending on the levels.

I certainly achieved the required results the first time from 18mg -> to 7.5mg but currently struggling at 12/12.5mg but as of yesterday l am now on an increased dose of MTX so hoping for good results 🙏🏼

[PMRpro Ambassador in reply to Suffererc]

At this stage it is not only the PMR symptoms that limit your reduction, it is also returning adrenal function and THAT will only return in response to a lower corticosteroid dose than you need daily to function. Theoretically 5mg pred is plenty - but it does depend on how much of it you absorb and the fatigue bit your are experiencing is almost certainly that you are a bit on the low side for you.

Using methotrexate at this dose won't speed up you getting off pred and it does NOT entirely replace pred in PMR. They are probably working on the science fiction in the medical literature that claims PMR lasts 18-24 months. In fact a study published a bit back by the Mayo clinic found the median duration of steroid management of PMR is just under 6 years and only about a third of patients are off pred in under 2 years - a very different scenario than your doctors are plugging.

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are 2 articles about the same work, the link to the original paper is at the bottom.

It is unreasonable for any doctor to push another immunosuppressant drug onto someone who is on 5mg pred - a physiological dose which is accepted as doing little damage. Prof Dasgupta says he likes to keep some patients on 2-3mg as it reduces the risk of relapses.