Update with some pleasant news! I think? and a question

[catdance]

I went to my rheumy yesterday and was supposed to be at 5mg. I am just beginning the taper for 7.5mg. Needless to say she was not happy. She had to push the issue because; "my GP doesn't like it that I am still on the pred." I thought that was curious because the only reason he even got involved was because she put a note in my records that she was not happy. I asked her if being on a moderate dose and with pretty much all the pred related issues were resolved or resolving was really that bad. She said yes and kind of got red in the face, clearly looking like she was about to blow up but maintained her prowess and continued to push getting down to a lower dose. Anyway, I told her that I was still feeling achy and that I am and will be going through some pretty big stress factors so I would like to stay where I am at for a bit because of it. She approved when she found out what the stress was and extended my next appt from 3 months to 4. Then she asked if I could taper any faster, like every 4 weeks. I told her it was closer to 6 weeks. I told her I was having some back pain from sitting at my computer typing too long. Too long is like 45 to an hour. She suggested I try ibuprofen or Tylenol a couple times a day. Then she offered to put in for physical therapy and asked which areas would I like to work on. I said neck, shoulders, lower back and hips were the main areas. She put it in right away and yesterday afternoon I got a call from PT to schedule it. Of course they are a month out but I thought that was pretty quick response. She also said, which I thought was the amazing part, that she wasn't going to push it to get off the pred after 5 mg because some patients just can't. Sometimes they have to stay on a low dose. :0 I also had an ESR test result of 7 down from 14. She hadn't done any other tests because with the CRP test, the labs in our town don't do the ones they need. There were some other tests that hadn't been run on my blood RDW, RBC, CDW, etc. that were quite high both times but I had an abcess tooth that is now resolved with a few courses of antibiotics and I thought maybe that should be checked and I also asked to check for anemia. She said that was a good idea. Sooooo,

My question: I've been waking up with very minimal soreness or stiffness, unless I over do it, but I seem to get achy as the day wears on, along with overwhelming fatigue. I have been achy in all the usual PMR places, with the added back pain and quick exhaustion. Some days it seems as if my legs weigh a ton but if I "push" through it, I'm ok. I had gotten my walking up to 2 miles but between, rain, ozone action days and the Canadian wild fires, I haven't been able to get out to walk much lately. I've also lost some weight! 5 lbs since my last appt, 12 lbs overall. I feel like I've reached a plateau in energy levels. Some days I barely have enough to do anything at all and I have to choose between exercise or housework, one chore in one session. I'm napping more than I used to. I'm wondering if it could be that my adrenals are beginning to give me some issues or am I tapering too fast? Or is it the stress of the situation? Any advice or suggestions is most welcome.

[DorsetLady PMRGCAuk volunteer]

Unfortunately probably a combination of all three…..

But now she’s eased up a bit on pushing you to reduce, that may make you slightly less stressed..

If it is adrenals, then it’s a matter of slower tapering plan, as small a steps as you can (depending on tablets available in US) , resting as much as you can ( not easy I appreciate when working), time and patience.

info on adrenals and tapering plans - if you aren’t already aware -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Good luck…

[catdance in reply to DorsetLady]

Thanks DorsetLady for the quick response and info! I was aware of some but never hurts to have a refresher on it. I definitely appreciate it. FYI in Michigan, US. Still being affected by the wild fires from Canada. It makes it difficult to breath when walking/jogging, doing gardening or mowing. Yes she has eased up but she tells me she's giving me special exception. I feel sorry for the other patients she has then! Not to go backwards but I wonder if maybe a step up to 9 or 10mg for a few days to a week to mop up the inflammation would help? Then go back to 8mg and try the taper again?

[DorsetLady PMRGCAuk volunteer in reply to catdance]

Might be worth a try -and sorry got confused when I mentioned tablets available in Canada -will amend to read US…

…and yes fires been ongoing for long time now ..

[PMRpro Ambassador]

We believe the lower you get, the slower you need to go if you have ANY problems. I can exercise or do housework - can't do both so I have a cleaner for an hour a week for the things that cause problems and do exercise as I can - and some days I can't.

I've had loads of back problems for the last year and pain relief has really been a problem. I have finally found the right mix I think - 1g paracetamol/Tylenol before bed, 600mg ibuprofen in the morning seems to do for the day. It is important to catch the pain before it starts.

I would say the dose is meaning struggling adrenals and that is being added to by the stress factors. Never underestimate how much any form of stress impacts - because it increases the PMR, needs more corticosteroid when you are at lower doses and messes everything up!!

[catdance in reply to PMRpro]

Thanks PMRpro! I do take a lot of frequent brakes but sometimes it's just too much and I need to rest anywhere from 15 mins to 1 1/2 hrs. It's not so bad when it's shorter naps but when it is the longer ones it takes up so much of the day and I feel like I'm not getting anything done.

[darkred in reply to PMRpro]

I'm wondering if stress gave us this condition in the first place. In general, it seems too many people are stressed, and I believe many conditions and disorders are caused by stress, not just PMR.

[PMRpro Ambassador in reply to darkred]

IMHO, there is a lot of guff talked about stress. Ordinary living is not stress. And it is entirely up to anyone of they give in to pressure from others which seems to be termed stress.

[darkred in reply to PMRpro]

Caring for my dying husband in our home was stressful for me. 24-hour care. Then, there is the adapting to widowhood after so many years of being together. Giving in to the pressure of others? Maybe too much overtime in order to complete assignments at the job? This happens to some people so they can keep their job and pay for things. (In the latter case, I am thinking of a loved one.)

[PMRpro Ambassador in reply to darkred]

I do know all about that - my husband was ill at home all through the Covid period with no option of assistance because of the constraints of closed care homes and lack of staff and beds. When he finally died we'd been together for over 50 years - I had never lived on my own before but this is a lot easier than that 2 years of caring for him along with no family within a thousand miles and all subject to restricted travel because of working in the NHS so the risk of having to be isolated on return because of Covid was a no-no. Coincidentally, they arrived on the Wednesday night just over a week before he died - the only nursing help I had in that time.

But that wasn't the cause of my PMR - I've had it for nearly 20 years! I needed more pred while he was ill because ot the physical requirements when I had to do everything, But I don't think it was the underlying PMR that worsened - it was the myofascial pain syndrome part of PMR,

[darkred in reply to PMRpro]

I think what you're saying is that people with no or very little stress get PMR. Is that right?

[PMRpro Ambassador in reply to darkred]

They can yes. I didn't consider the life events previous to PMR to be particularly stressful. And there is no single cause of PMR - it is the accumulation of insults to the immune system over years that poke at it until it goes haywire. But that can be illness, chemical, environmental and a whole host of things including stress - it is not the sole cause.

[catdance in reply to PMRpro]

I was told that the stress of my husband passing, in the way he did, and having been the one who found him was the cause of the PMR. The symptoms showed up about 5 months after he died. I wasn't diagnosed for 10 months after. I can't say that anything else was a factor. I was pretty healthy but overwhelmed with everything I had been left to take care of on my own.

[darkred in reply to catdance]

Certainly, the way in which one loses a loved one is a major factor in how we react to this very stressful event. I am sorry for your loss, and it sounds like there was no time for "anticipatory grieving" as there was in my case, where one is somewhat prepared that a loved one's symptoms point toward a hospice phase. In your case, it does sound like the death of your husband plus everything you had to take care of on your own, was a contributing factor or (as you were told) a "cause of your PMR." It does bsound like you were on stress overload.

We are all different in our genetic makeup, and some commenters do not see stress as predictive in who gets PMR. I am not an expert -- just contributing my "two-cents."

[Mayadill in reply to PMRpro]

Depends what you mean by 'ordinary'. Orderly living sounds better to me. We all talk of people having stressful jobs. Requests coming at you from all sides, the 'necessity; of doing two things at once. It is not in the workplace entirely up to you if you surrender to pressure and to fast forward to many a scenario here ordinary living might comprise visiting one's doctor in the approved fashion and finding that doctor to be a blithering idiot apparently intent on making one's life worse. Both QOL and supply of Pred may be at stake. I call that stress. .

[piglette]

You might mention to her that steroids and ibuprofen are contra indicative which she should already know!! It usually slows them down a bit when you mention it. You could always try increasing by 5mg for a week or so to hit the PMR on the head.

[PMRCanada]

Glad to hear your rheumy is responding to your needs and discussing the tests/treatment that require attention. Ultimately patients and medical professionals should work as a team. Perhaps she will adopt better patient relation skills from her relationship with you, that then gets passed on to other patients.

Adapting to life with PMR/GCA often means prioritizing our needs and energy. Good for you for keeping up the exercise despite all the barriers of late (we’ve had some poor air quality days in regions here in Ontario too). I’d say the housework can wait as it won’t provide health benefits. You are also contending with fatigue (possibly related to adrenals), so this factors in when deciding what you are able to do and when.

A short pred burst might help, but so would minimizing stress, however I do appreciate that life happens. We become experts in our body/symptoms as time marches on and perhaps your test results and PT will help you find the best way forward.

All the best and keep us updated.

[sdowney717]

Prednisone does age your body, it is a good idea if you can lower it to do so. At what level does prednisone not have some bad side effects?

[HeronNS]

Because you are experiencing both achiness and fatigue it seems you really shouldn't be tapering at all for a little bit. If you do increase, when you come back down stay just above where you were for a couple of weeks to make sure the aches are under control. Fatigue, I'm afraid, comes with the territory and only tapering will gently nudge the adrenals back into full service. So concentrate on dealing with the PMR pains, and hope the adrenals start picking up their pace soon. I think it very encouraging that doctor will lay off the pressure when you reach 5. But we are all different and 5 may not be your magic number! Pred may have some drawbacks, but you are in single digits, and, as we know, inflammation has it's own health drawbacks.

One other thought though. When I complained to my doctor about fatigue (I was somewhat lower than you are, but we are all different and certainly the fatigue symptoms sound similar) she ran some tests and found that my iron (ferritin) was low again. Other tests she ran at the time (not including cortisol btw) were normal. Since then I take a liquid iron supplement from time to time just to keep the ferritin levels up. So maybe there is some other issue going on which, coupled with pred dose being in adrenal territory is making things a bit more difficult at the moment.

[SheffieldJane]

Any scope for saving a couple of mgs foe evening. This has saved me before.

[catdance in reply to SheffieldJane]

I tried splitting the dose awhile back but it didn't work for me. I was still waking up with the aches and stiffness and wouldn't go away until a couple of hours after taking the morning dose. Now that I am taking my total dose at 11/11:30pm, this seems to work best for me.

[Cosmos22Marigold]

Hi, nice to meet you. So sorry of the pain your experiencing and the conflick between the two who are advising you or trying to. I'm no expert on these things but i had pmr for 2 and half years experiencing all sorts of problems with steroids like cateracts, bone loss, blurred vision, shakes, and very bad headaches to say a few. I lost 3 teeth that just went loose, a Dr that only spoke on the phone. Never have an appt. Just told me I had pmr due to the blood test. After 10 months of really bad vision and headaches i changed my Dr for the better and for the last 3 weeks i am now off steroids. Yipeeeee. Fingers crossed i stay off them. I know they do help the pain so much when first diagnosed but getting off them is the hard part being as we have to carry on with our everyday jobs etc. I had a hiccup at 5mgsand had to go back to 6mgs for 6 weeks but i was happy with that. Dorset lady has been my saviour on this site. She went through 8 years of it but finally made it. Her help and advice has been marvellous. I'd forgotten all about adrenal glands kicking in but she reminded me and gave me references to read, all of which were so helpful.I had some physio for back muscle pain but it was minimal advice.

I am 84 and looking after my husband but i can say i feel like my old self now and back to gardening and housework in time that suits me and my illness that hopefully has gone.

The dentist however did tell me that if i need an extraction in the next year i will have to take 5mgs steroids for one day prior to the extraction and then off gradually in 4 days after. Always good to know these things i think.

Good luck with your tapering but slowly is the answer as Dorset lady taught me. Regards Rita 😘

[DorsetLady PMRGCAuk volunteer in reply to Cosmos22Marigold]

Not quite that long actually, but best part of 6 years -with a quarter of it undiagnosed . 🌸