"Deathly Fatigue!"

[Paulagcl]

Aptly named. I am in the midst of tapering and was doing fine but that aptly named fatigue has hit. I guess there is nothing to do but stay the course. I'm urinating a lot, which I read is one side effect of lowering the pred dosage since made the body retain more water. Any magic bullets to suggest? I assume not!

[Merryfield]

My advice is to stock up toilet paper and take naps.

[HeronNS]

Stay the course indeed, but maybe slow the taper a bit to give adrenals a chance to catch up?

[Paulagcl in reply to HeronNS]

Yes I thought of that -- I'll give it a couple of days and see how it goes. I have nothing much going on this weekend so can just rest. Last time I reacted to a lower dose I had a little pain for a couple of days -- nothing severe -- but then it passed.

[HeronNS in reply to Paulagcl]

The fact that it passed is a good sign, just steroid withdrawal, not breakthrough PMR pain. But also a hint that you might want to go slower. How are you tapering at the moment? Dosage? Frequency?

This might make you feel better: my second time approaching zero. Have been approaching it for months. I take half a mg for a few days, then have a zero day. So far I can manage one day zero, three days half a mg. Who would believe that .5 can make such a difference? This morning I checked my bottle of pred. Prescription was filled, 100 1 mg tablets, mid-August. I still have half of them. Now that is a slow taper!

[Exflex in reply to HeronNS]

Yes, me, I’m with you on the 0.5mg.

About 6W ago I ran into trouble tapering well into the 5 week 0.5 to 0.25mg taper. Increased to 1mg for 7 days, then dropped back to 0.5mg. I’m trying the 0.25mg taper again because doctors won’t allow me to reduce my dose of omeprazole 20mg until I’m off steroids.

[HeronNS in reply to Exflex]

Do you have a medical condition which requires the use of a PPI? Less than 1 mg is so vanishingly small a dose... .

[Exflex in reply to HeronNS]

omeprazole started nearly 4 years ago when Pred was prescribed for PMR, but the GP doctors don’t want me to reduce the dose of the PPI until I’m off steroids. I’m also taking Aspirin 75mg but at a meds review with a pharmacist he said I should be ok taking it without stomach protection. So another 2 months 🤞 and I hope to ramp down omeprazole and finally be off it.

[HeronNS in reply to Exflex]

Interesting. I wouldn't take either pred or aspirin witout food, but indeed food is all I've ever needed! Yoghurt best I think, but even a slice of bread and glass of water serve the purpose. Is this common, I wonder, to automatically expect a person to be on PPI for the full duration of pred treatment, or are they maybe mixing this up with people who have to take a higher, potentially more damaging dose of pred for a different condition but for a very short period of time? Don't mind me. I've spent my life like a three-year-old always wanting to know "Why?"

[PMRpro Ambassador in reply to Exflex]

Strange isn't it - low dose aspirin used to be advised for GCA patients but at the last lot of recommendations they took aspirin out because the risk of gastric bleeding far outweighed any benefits. But the pharmacist isn't bothered ...

[HeronNS in reply to PMRpro]

Some aspirin is coated. Hubby got low dose ones for some reason, and they're not the nice tasting kids' aspirin, but something with a coating. When I first was diagnosed with osteoarthritis my doctor told me I could take coated aspirin every day. I don't remember the dosage. I don't know why he told me to take it. Initially I thought it would help. Perhaps he thought it would help with pain? I never complained of pain, only Heberden's nodes! And somehow in pre-internet days I came across information that aspirin could interfere with cartilage regeneration. So I promptly stopped taking this unnecessary aspirin. Probably not much later started with the glucosamine. A while ago I cut the dosage by 25% as my blood sugar had become a bit high again and I'd learned that glucosamine can cause that. It's probably no coincidence that my OA is feeling exponentially worse these days so starting today I'm upping the glocosamine again, although blood sugar had indeed declined back to normal last blood tests. Seems like there's always something, but in the big picture I'm still a lot better off than many.

How have you been lately? I hope the AF is behaving.

[PMRpro Ambassador in reply to HeronNS]

It has its moments - did you see the first ablation appointment was postponed as the doctors were going on strike! It is replanned for 9th January - hope it happens then! I have been given lignocaine/lidocaine patches to try for the back pain - very successfully thus far, not perfect but pretty good, and one of the side effects is to calm arrythmias! It does seem to have been quieter the last few days, Side effects can be positive! I have a pacemaker so no worries about bradycardias ...

[HeronNS in reply to PMRpro]

I missed that. Was the strike a short one to make a point or is it ongoing?

Yes, I hope you get your appointment in January. Actually not that far away now. I might have to think about Christmas

[PMRpro Ambassador in reply to HeronNS]

Just the one day - but another single day tomorrow as well. It's to make a point to the Meloni government who are trying to mess about with the doctors pensions, I'm hoping that even if they continue with one day actions, they will be on a different day so Monday and Tuesday have been done for now ...

Yes - have been trying to get the brain in gear as the daughter arrives on Saturday!

[SnazzyD]

No magic bullets, just hang in there and don’t over do it. The urination isn’t necessarily the lack of Pred and could be a number of things, so it’s worth thinking about. Do you mean you are urinating frequently or in large amounts or both?

[Paulagcl in reply to SnazzyD]

Frequently, small amounts. But the timing came right with the next taper level. I'll see how it goes. I emailed my dr about it. I've had this before and urgent care kept putting me on antibiotics but finally my dr did a different kind of culture and took me off them, gave me a drug to calm the bladder and that has worked until now. My DEXA scan shows osteoporosis so that means a different drug -- it's all feeling overwhelming right now, which I assume is the lack of energy. I also let my physical therapist work me hard yesterday, which was bad judgment, and she seems to know nothing about PMR so I should have stood up for myself. Oh well!!! Maybe I'll learn by the time I'm 100!!!!!!!!! Thanks for answering!!! I haven't been on the network for awhile -- all was going well taper-wise until today.

[DorsetLady PMRGCAuk volunteer]

Maybe slow down the taper a bit - in steps, so 0.5mg a time rather than 1mg.. and a slower tapering plan as linked below - just select who one you fancy-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

…and as suggested, have a break from tapering for a month a. To allow adrenals to catch up, and b. winter months always make it more difficult.

And find a therapist who knows about PMR - one that doesn’t can cause more harm than good.

[Paulagcl in reply to DorsetLady]

Yes, thank you -- I slowed down the taper the last time you suggested it and that worked fine until now, but if I don't feel better in a day or so, will slow it again. I had a good talk with my rheumy and our communication is much better now and he's fine with whatever will work me, though he's concerned about the osteoporosis so of course is hoping I can keep reducing the prednisone at a decent rate. I have an appt with an endocrinologist next to discuss that, so the timing is good for her to give an overall opinion. It's interesting that not one physical therapist I've talked to has even heard of PMR. I don't know about other countries, but here medicine has become ridiculously specialized. For example, orthopedic drs who will treat the foot but not the ankle, the ankle but not the knee -- etc. Crazy!!!!!

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

Yes that is crazy -don’t think UK is quite that far yet… and I think most of our physios are in or have been in the mainstream NHS so maybe more aware of PMR etc.. although won’t say they all are!

[Paulagcl in reply to DorsetLady]

That's interesting. I did notice that when I had a pt who was part of a hospital-based medical system, they knew more about the body in general. That was where I last lived. Here the pts I have gone to are in private settings, not where my medical doctors are -- that's just the setup. This one is quite young. I liked her at first but I see now she is quite impatient with my warnings that it is not good for me to push too hard. I think I will take a break from her for now -- there's enough I can do on my own.

[Paulagcl in reply to DorsetLady]

I've noticed that pts from other countries have a wider range of body therapies they are trained in, including the not-strictly-medical such as Feldenkrais, and that health coverage has taken care of. That is not the case here in my experience. Here in Los Angeles and also San Francisco, where I used to live, clinics could emply such body therapists and they could get paid by insurance under that umbrella. Maybe other places, too. Anyway, it is what it is, wherever we live, and we have to learn our way through it.

[PMRpro Ambassador in reply to Paulagcl]

Yes, I was just thinking while reading your replies - the physios here where I live in northern Italy are mostly locals but they trained in Germany or Austria and are far more aware of PMR and also have a wide background of what the UK or USA would regard as alternative treatments like Feldenkrais but they choose the best approach for the patient, not a one-size-fits-all set of exercises to do on your own.

[Paulagcl in reply to PMRpro]

Germany especially seems to have a lot to offer in that way, in psychological areas, too. Interesting. Though in Israel the physios are also trained in what we here call alternative methods but are included in their training, according to one I had here several years ago. Though in this country, especially if one is not yet on national heath ins (Medicare), there can be wide variation state to state on what insurance will pay for.

[PMRpro Ambassador in reply to Paulagcl]

My orthopaedic specialist in German had trained in chiropractic as his mentor at specialist training was of the opinion that you couldn't be a fully rounded orthopod without a knowledge of it.

[piglette]

I just gave in to the deathly fatigue. I had trouble lifting my arm to scratch my nose I felt so weak. I did not reduce for several months. In fact at one point I did increase by 1mg as it was so bad.

[SheffieldJane]

A regular after lunch nap, whether I want one or not, every day, 90 minutes, saves the evening.

Urinating a lot worries me less that not urinating much, which I have also experienced. Drink lots of water though.

Some of this just has to be tolerated, lived through and of course moaned about here in our safe space. X

[Paulagcl in reply to SheffieldJane]

right!