Can't seem to get below 4.5mg!

[AyJayBass]

I made it to 5mg Pred nine months ago, having taken nine months from diagnosis when I started on 15mg and very quickly got to 10mg following GP's plan. I found this forum and GP was very happy to let me titrate at my own pace following DSNS. (He even picked up DSNS from me and used it for other patients).

I was down to 4.5mg seemingly without a hitch by 1st Feb this year but flared on the first week of a taper to 4mg. Back to 5mg where I stayed for 6 weeks. Another DL taper helped me to arrive at 4.5mg by 20th April where I sat for 3 weeks before attempting the next ½mg. Two weeks into that taper another flare so back to 5mg where I stayed for 6 weeks before starting a 7 week taper to 4.5mg. This was interrupted by a chest infection and so sick day rules which meant I started that taper again. I finally made it back to 4.5mg on 23rd August and a week later I commenced another DSNS to 4mg.

Last Saturday I had my flu vaccination. Treading carefully, I spent the rest of that day in my recliner chair followed by most of Sunday and then all day Monday in front of the TV as most of you will have done. Over those 3 days I had experienced an abnormally runny nose and productive chest (I have perennial rhinitis and bronchiectasis so am so stranger to excess mucus). In addition there was some piriformis pain in bed, particularly in the right hip - a weak point. (Not greater trochanteric pain, I have had that in the past and know the difference).

Tuesday morning, bilateral pain in buttocks and shoulders and right leg weaker than usual so I am now back up to 10mg for a few days and will then see if I can get back to 4.5mg and stay there for goodness knows how long! It looks as though this is the dose I need to stay on top of the inflammation.

I have not reported this to my GP as, with all the wisdom and knowledge I have absorbed from this forum, I believe I am on the right path. I have never seen a Rheumy. My Pred dose is low enough not to be too concerned about and MTX is probably not indicated.

AND I have my Covid booster (bivalent I presume) booked for this coming Saturday! Apart from the first dose which was the final straw that triggered PMR I have not experienced anything more than a sore arm with doses 2 to 5.

Thanks for reading thus far!

Does my story echo anyone else's experience? Do any of our experts have any advice to offer or possibly feel able to bless my approach?

Arthur

[piglette]

Can you check if your vaccine is the new bivalent and let me know, as I am very suspicious about what vaccines they are using? Thanks.

[Bridge31 in reply to piglette]

I had mine last Sunday and I was told it was the new Moderna. I felt a bit fluey that evening and a sore arm for 2 days (Mind you she did jab it in very roughly 😅.)

Otherwise no ill effects at all.

[piglette in reply to Bridge31]

Moderna have said we are not going to have their latest vaccine available until the end of the year. Perhaps things have changed. I am still suspicious.

[AyJayBass in reply to piglette]

I have just returned from the vaccination clinic. I was given the Moderna "Spikevax bivalent Original / Omicron". Nothing to be suspicious about! I was pleased to receive it. I had the original Spikevax last time.

[piglette in reply to AyJayBass]

That sounds good. I have heard there is a new version of omicron the BF.7, Omicron Spawn!! I am not sure it has hit UK or not.

[PMRpro Ambassador]

Looks fine to me - when you flare repeatedly at about the same dose it is your body telling you you have arrived at the interim destination. You will get lower - just not yet ...

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro, it may be frustrating, but if your body needs 4.5mg, then it needs 4.5mg….

[Poshdog]

agree with experts above. It took me 2 years on 4mgs and at last I think I have managed 3.5mgs.

[Ozziedays]

I flared at 4.5mg twice (bloods revealed it, no symptoms). My rheumatologist put me on MTX and I’ve just dropped to 1mg with no side effects and no problems. I appreciate it doesn’t work for everyone but maybe worth a chat with your doctor? Mine wasn’t keen on me yo-yoing on pred indefinitely.

[ProcrastiBaker]

Hello…you feel pretty certain that the Covid vaccine triggered the PMR? I have been wondering the same thing in my case. Is there any evidence of causation rather than just correlation? Does any agency keep statistics to see if there has been a spike in PMR since the pandemic started? I am in the USA, by the way,

[HeronNS in reply to ProcrastiBaker]

They will have been keeping track of reported adverse reactions and I suppose at some point there will be a picture. However a vaccine trigger for PMR most likely was the final trigger which led to symptoms. Most of us when we look back find that there may have been a number of stressful events in our lives leading up to that thing which we blame, whether a vaccine, a fall, an illness or a divorce. The causes are as varied as we are!

[PMRpro Ambassador in reply to ProcrastiBaker]

The vaccine probably HAS triggered cases of PMR and GCA - but only because it, like a lot of other things, has an effect on an already stressed immune system that would have reacted similarly in response to a flu or shingles jab, to actually having flu or shingles, to any other illness, trauma - emotional or physical - and a load of other potential triggers. The vast majority of cases of PMR happened long before Covid - Covid itself has resulted in millions of cases of Long Covid which in many cases bear great parallels to autoimmune disorders, most of them far worse than PMR. One of the benefits of the vaccine is to reduce the incidence of Long Covid.

There is no single causative agent for PMR - it is the result of a lifetime of insults to the immune system and eventually it goes haywire. The Covid vaccine is just one and it is obvious because so many vaccinations have been carried out in a short period of time.

[Molefosey]

Hi I have recently dropped to 4/5mg and to date its ok- i intend to stay on this dose for a month and then drop to 3/5 etc - getting the flu injection in a week or so- did not even think that this may cause a flare up! maureen leathem