Please

[Doughface]

Have PMR over a year was on 60 then 50 then 40 then 30 and finally 20. Also on I’ve every 4 weeks Everything I do is an effort and have to lay down after 20 min. I am 76 but was a very active person before this do you think I will ever back to somewhat normal?

[SheffieldJane]

Yes I do.I hope your drops were not 10 mgs at a time. They shouldn’t be more than 10% of your dose. Use a gentle tapering programme as shown in the pinned posts. Is it pain that makes you have to rest after 20 minutes of activity?

[Doughface in reply to SheffieldJane]

Part pain part exhaustion

[SheffieldJane in reply to Doughface]

I would say that, that is unusual and maybe due to reducing Pred. too quickly. Doctors can sometimes advise unrealistic tapers. Unfortunately these diseases cannot be rushed much as we all want to get off steroids. I also battle the fatigue and find that a nap after lunch is a lifesaver and it allows me an evening ( 90 minutes) body’s decision. What was your tapering plan?Has your doctor looked for other conditions that maybe contributing to your symptoms?

It is so wearisome, everyone on here understands.

[Purpleazalia]

Yes I do, it will get better, but slowly over time and when your body is ready. Steroids can have many side effects, so it's worth discussing/having a health check with your GP.

My reply to family and friends who ask how I'm feeling is 'I'm okay as long as I'm not doing anything!'

I don't know what type of activities you're referring to, but as an example of my experience, above 15mg/day of pred, I found it a problem to stand at a kitchen work surface to prepare vegetables (my solution was to do them sitting in my comfy chair), also to sweep the kitchen floor (so I did 5 minutes, had a sit down, then another 5). I'm now down to under 10mg/day and it feels like an achievement to have built up to sweeping the kitchen floor in one go (and other household tasks). I had to change my mindset to not expect to be able to do much in one go - 10-15 minutes of activity, then a half hour sit down.

[Kendrew]

Hi Doughface. As others have already said.......yes......you will get back to some kind of normal. I managed to taper down to 2.5mg and found my energy levels definitely improved, but when I had to increase back up to 15mg after a flare, the combination of PMR and a higher dose of pred left me feeling wiped out again. The slightest thing would quickly leave me heading for the sofa and my stamina and momentum were definitely diminished. It's so frustrating to have invested much time and energy into staying fit and healthy as I approached my 60s, to then suddenly have the results of all that hard work snatched away in a moment by PMR.....but there's still much you can do to minimise the effects of both the condition and meds and it's important to do so. It's a slow process though and needs careful consideration.

My motto.......Progress through Pacing and Patience!

[Telian]

Hi Doughface,

You’ve had some good advice but please listen to your body - if it’s screaming at you don’t ignore it and give it the TLC it needs

[PMRpro Ambassador]

Are you sure it is only PMR you were diagnosed with? Those doses are what are used in GCA. Or are you not on prednisone/methyl prednisolone?

One of the diagnostic criteria for PMR is that it responds to a moderate dose of steroids (usually 15-20mg pred/day) and if a patient requires more than that then the diagnosis of PMR must be questioned.

You obviously got hijacked by the website gremlins - what else have you been on every 4 weeks? Is it ACtemra? And are you on 20mg pred now? That is the usual starting dose, not a dose to be at after a year.

[Doughface in reply to PMRpro]

Yes ACtemra

[Doughface in reply to Doughface]

I also had Lyme disease and broken neck with rods and screws which I guess can contribute

[PMRpro Ambassador in reply to Doughface]

I would suggest you need to find doctors who will think a bit differently. If it were really PMR that is causing your problems, being on Actemra should get you to a much lower dose of pred. Since Actemra, as a biologic, is very specific, there seems to be a great deal that is not PMR going on if it needs 20mg of pred to manage it and there may be something better.

It seems that a notable side effect of Actemra is fatigue and it is also a long term effect of Lyme disease. If you have another autoimmune disorder as well, that can also cause fatigue, it is an inherent part of a/i disorders.

Maybe the links here will help you understand the fatigue and pacing:

healthunlocked.com/pmrgcauk......

[S4ndy]

I am just like that if I don't pace myself. For example on Friday my reclining chair was taken for repairs. After the two men carried it out, to my horror, the carpet underneath was filthy! So immediately got the hoover and then the carpet shampoo. Took me about 15mins to get it up to an acceptable standard. By the end of it I was having a head sweat and looked like I had just come out the shower! By the time I went to bed my back, hips and bottom and thigh muscles started to spasm. The pain was horrendous.

It has taken me all weekend to get back to my regular pain level, mostly by lying on the bed. Am I never to learn? 4 years in and you'd think I wouldn't do this to myself. Pacing in everything. Sometimes I get so frustrated with myself. It's very hard to not do things that I would have found a breeze pre-pmr.

Guess I am not alone with this frustration and for the most part I have become good at pacing but sometimes I am straight in there without thought 🙄

[MrsNails]

Hi, just wondering why you started at such a high dose for PMR? That’s usually the dose for GCA.....

What do you take every four weeks? It’s not clear from your post then maybe we can offer you some further help.

Kind Regards

MrsN

[Doughface in reply to MrsNails]

Actemira had both PMR and GCA