Flare or withdrawal

[Kiwisufferer2019]

Hello to all fellow sufferers and the wise ones wh give such wonderful advice. Ive been feeling really good, that at last I seemed to be getting somewhere with my taper. I have successfully tapered to 9mg, using DLs slow taper, then after week 5 I've stayed on the new dose or an extra two weeks until all headaches leg aches etc had gone. Saturday was the end of the 3 weeks at 9 and I was going to start the taper to 8.5, but Saturday came, and I felt terrible, the fatigue was so debilitating and Saturday, Sunday and today, I haven't had the energy to do anything other than essentials. I have been on prednisone for 3 years now and have found the tapering extremely difficult, the two covid years I yoyoed, I couldn't talk to Rheumatologist or GP and had to manage by myself. I don't want to go up in my dose, but will see how the next couple of days go. Can the withdrawal symptoms go for this long? I would really appreciate any ideas/ advice.

Janis

[HeronNS]

If your fatigue and aches are being caused by PMR it seems your dose is not high enough. What was the dose at which you last felt your symptoms were properly under control? Also, it might be a good idea to get some detailed bloodwork done because there might be something else going on, It need not be anything dire. Even low iron, or some other easily corrected deficiency, can cause fatigue, for example.

Have you been doing or experiencing anything else different and either more stressful of physically taxing lately? I have to say the last couple of weeks I've felt really tired, but I think it's a reaction to what was a really nice visit with my daughter who lives a 30-hour train ride away and I've only seen twice since 2019, but there was a huge amount of stress with travelling in covid times (much less safe than last year because all covid protections have been dropped) plus physical stress of sleeping in a different bed, and lugging my suitcase and backpack.

[Kiwisufferer2019 in reply to HeronNS]

Thank you Heron, at 9.5 i was fine, will get a blood test arranged if this carries on.

[Kiwisufferer2019 in reply to HeronNS]

only the fact that my Husband was in hospital last week, otherwise nothing different.

[HeronNS in reply to Kiwisufferer2019]

You know, as my experience shows, even something you think you are handling well can cause flaring. I do not know why it is, but although PMR is definitely not in our head, there is a psychological component in that our bodies respond to both physical and emotional stress. I hope your husband is doing well now.

[HeronNS in reply to Kiwisufferer2019]

Just saw your other post....

You have been under a lot of stress. Don't try to taper until you feel well enough to, and do get those bloodtests done, so you rule out anything else which might be affecting your PMR recovery. All the best.

[Kiwisufferer2019 in reply to HeronNS]

Thanks so much for your advice. My husband home now, and ironically is on 40mg pred a day for 4 days then 20mg for 5 days, but it has made him feel so much better. his colonoscopy was clear so that's a relief.

[PMRpro Ambassador in reply to Kiwisufferer2019]

Ah - I think that answers for a lot! You are under stress but at this sort of dose you are borderlining on the need for return of adrenal function - and even at higher doses of pred, the adrenal suppression means they can't respond to stress with a burst of activity to help out. The result is that you feel wiped out and it may not happen at the time but when the stress relents a bit.

[DorsetLady PMRGCAuk volunteer]

No withdrawal symptoms shouldn’t last that long - with probably all that’s been going on (and maybe getting into adrenal needing to work again territory) you are just below what you need.

So no more tapering for now…and even though you may not want to a return to 9.5mg might be sensible.

Once everything has settled with hubby (and don’t underestimate how much that can throw you off balance) then start tapering again.

[Kiwisufferer2019 in reply to DorsetLady]

Thanks Dorset Lady, I definitely won't be tapering any more for a few weeks, until Ifeel normal again. This morning I do feel better than yesterday but will be very cautious for a while. I don't want to go backwards. Janis

[confused2]

I am three years on prednisone and now down to 1mg. Below 10 was the hardest stretch. I stayed on 7mg for 3 months and 5 for several months and did the DL slow method. I had horrible fatigue during this time. I kept going tho as. I did not have GCA symptoms. No headache etc. The aches and pains were mostly arthritic and I had many and couldn't do a lot. After I got down to below 3 I started to feel some better. Still some pain but manageable. I have to have a knee replacement so some of the pain is from that. I stuck with the rule if it wasn't GCA symptoms it was just the withdrawal and I was gong to have to go through that even if I went up to relieve some aches, I was still going to have to come down. I finally see myself out of the main withdrawal symptoms and now simply age related symptoms. Hope this is some help.

[Kiwisufferer2019 in reply to confused2]

A great help thanks confused, I am feeling much better today, but will not taper any more for a few weeks. Ialso have osteo arthritis in neck, hip, one already replaced, hands and ankles, so that pain is rearing its head again, but apart from that the only pmr pain i have is in the thigh muscles. its the fatigue that is so debilitating. however, it could be worse. My husband has metastatic melanoma in the form of brain tumors, one removed 18 months ago, the second one being treated with keytruda. Thanks so much for your reply, it really helps hearing others symptoms/experiences and knowledge. Janis

[confused2 in reply to Kiwisufferer2019]

Glad to be of help. WE need courage to continue on this journey. Good luck.

[Kiwisufferer2019 in reply to confused2]

Yes indeed

! it's certainly not easy is it? And thank you.