Happy New Year

[marionofnorwich]

Not much to post here but felt motivated to greet this helpful community into 2024, my fourth year living with PMR or at the very least the dregs and after effects. Indeed I often feel as though I have a hangover!

I have been pretty much signed off by my rheumatologist on a permanent 4mg of pred as he doesn’t think my adrenals will wake up enough to get me off totally (based on a short synathecen test). I don’t believe this is true so I will continue to decrease slowly currently hovering between 3.5 and 4mg depending on how I feel and how active I need to be.

Leg muscles are still stiff but supporting ‘dodgy’ knees although not apparently bad enough to justify joint replacement which I am wary of anyway

so, just going to see how next few months go as I am definitely better than I was a year ago. Hope that you are all improving too

Marion

[SnazzyD]

My Synacthen test was far from ideal at 4mg and I certainly felt like it, but my Endo said to keep reducing.

It took a good 18 months to start feeling more normal but I also had had a couple of covids with one long Covid in that time. I would say there’s still a lot of room for improvement at your stage. I think there is far too much promise put on low doses of Pred and the effect of a long term systemic illness is underestimated. I would hesitate to say this is the best you’ll be. One day at a time.

[marionofnorwich in reply to SnazzyD]

Yes I agree. I was still on 4mg when the test was done and I must say that although I get more tired than I used to, I still can’t describe it as deathly fatigue or even near that. I would say that I now feel tired more like a normal person as before I was rather superhuman in that regard. However I do find that exercise has muscular repercussions even though my muscle tone is ok but I think I am just going to give it all some more time

[DorsetLady PMRGCAuk volunteer in reply to marionofnorwich]

I didn’t suffer like some -just random bouts of fatigue -but still took about 8 months to get down from 6mg to 3mg using VERY slow taper. At 3mg all fatigue went…

[Den73 in reply to DorsetLady]

Good morning everyone, dont post much just trying to get through this ups and downs.My third attempt of decreasing, taken advice from this lovely group with much appreciation.

Reducing Pred by 2.5mg evety 2 weeks, this morning my head feels tender on my temples, not a headache as such, I am so desperate not to just abort and up the dose again......is it OK to have some pain and tenderness, very worried about GCA no jaw pain, just a heaviness in my head.....I only started decreasing on Tuesday so down to 47.2mg

Been a roller coaster ride. Rheumatologist very difficult to talk to and quite frankly fetting more sound advice from all who have so much experience, so very glad I am connected! And thank you for the asvice given x

[DorsetLady PMRGCAuk volunteer in reply to Den73]

As you have some discomfort only a couple of days since reduction would say it’s likely to be steroid withdrawal [SW] rather than a flare - so give it another couple of days and see what happens. If it is SW then it should go away… however if it’s doesn’t and increases in intensity then it’s more likely to be too low a dose. If that’s the case, then you have no option but to return to 50mg, and giving it a bit longer.

I can appreciate why you are are decreasing by only 2.5mg a time, but the problem with doing it every 2 weeks is that you cannot always be sure that is long enough to know that current dose is enough, as it can take that long for a flare to materialise. Any chance of stretching it out to every 3 weeks?

[Den73 in reply to DorsetLady]

Thank you DorsetLady for your advice, I am also suffering very sore eyes which makes me think its withdrawal symptoms, although thats also difficult as with Sjorgans syndrome sore dry eyes is part of the disease.But every 3 weeks sounds well worth a try, shall give it a go., thank you as always.

[DorsetLady PMRGCAuk volunteer in reply to Den73]

.. every 4 weeks would be better 😊.. but Rheumy might balk at that, so if so negotiate 3.

Are you regularly using drops or heat pads for your eyes?

[Den73 in reply to DorsetLady]

Oh well he is 'unavailable' dont think it would matter to him hee heeI will try the 3 weeks if it doesnt work I will go to the 4 weeks.....thanks

Yes I am using drops 4 times a day but not heat pads...will get some today on Amazon I think, sore eyes leaves one feeling very despondent....what a road!

[DorsetLady PMRGCAuk volunteer in reply to Den73]

I got these after advice from optometrist last year - used it daily initially, but now just as and when - not cheap, but still going strong.

Mask

[Den73 in reply to DorsetLady]

Thank you x

[SnazzyD in reply to marionofnorwich]

Took me 3 years after stopping Pred to greatly reduce muscle payback. Now, if I don’t use it is lose really quickly. However, I am 6 years older and Covid a few times in the last 2 seems to like hitting my muscles.

[DorsetLady PMRGCAuk volunteer]

Not sure Rheumy is correct-unless he had a new crystal ball for Christmas.

I was on Pred at much higher doses for GCA and for over 4 years -and they are an absolutely fine … 7 years on.

I’m sure if they hadn’t been, after my 3 replacement surgeries carried out 2,3 and 4 years after coming off the Pred I would have noticed.

But as SnazzyD has said we are all individuals -so just take each day as it comes -and have hope.

[marionofnorwich in reply to DorsetLady]

Yes! I told him that I thought I could reduce further he said great if I can and he is willing to do further tests in 6 months time. So I am just taking it steady

[SnazzyD]

You could try no more than 0.5mg and over a minimum of a month.

[marionofnorwich]

Yes, I am going slowly. I do have a bit of stiffness in my neck and shoulders which I think is PMR so I think I am hovering on the brink of 'enough' but I am not organised enough to do one of the more structured tapers so I think 3.5 with an occasional boost might be best for me, over a longer period even than a month

[PMRpro Ambassador]

I'd say that 4mg is loads to interfere with a synacthen test and you should keep on with a Snazzy-style slow slow taper and see what happens. But if nothing else - you have a rheumy who isn't going to force you off pred come what may,

[marionofnorwich in reply to PMRpro]

Yes, and also I am on 'patient referral' so I can contact him at any time. I have been lucky here in Norwich as I have also just seen an orthopaedic consultant about my knee. Also quite flexible and not leaping to do a knee replacement but will put me on the list if I want to have one. Jury is out as my knee doesn't seem to be getting worse although my mobility isn't great but waiting to see what the PMR does seems to make sense. It seems to be shoving off but hasn't gone yet

[Gossiplady]

hi Marion! Oh dear! These clever people! You listen to your body, you know what to do. It is a slow process, but you will get there. A very happy New Year and a healthier one too. Stick with this marvellous forum, we are all pals together,

[marionofnorwich]

Yes, I like to think of PMR as a kind of jazz improvisation - you have to feel it and work with it, always ready to adjust! Happy New Year to all and let's all try to keep each other's spirits up as we are all resilient folk at heart