Learning by trial & error

[magmapearl3]

I am so pleased I joined this forum after reading about it in Kate Gilbert’s book. I read the posts daily and follow everyone’s journey with interest and empathy. I’ve learned so much and feel I have a better understanding and depth of knowledge about PMR/GCA than I had when I was officially diagnosed back in March. Of course each person’s journey is unique and there is still so much I have to learn about my own body’s reaction to PMR and response to Prednisone. I now know from personal experience how stress is very definitely a trigger for a flare of symptoms which, for me, have been under control (no stiffness & pain free) since beginning treatment. I tapered down to 12.5 mg 2 weeks ago and everything was ok until my car broke down a few days ago and I was left stranded. After a lot of stress and cell phone calls I was finally ‘rescued’ but was without transport for a few days. I had to walk to work (not far but an uphill walk) and needless to say the weather decided to turn cold and wet. Work also turned out to be stressful and yesterday I started to feel pain in my hips etc. which I thought might be due to the extra exercise of walking to work. But today the rest of my body has started to ache a bit more so I think it’s a flare. I should have taken heed of the posts I’d read about increasing the Prednisone when undergoing stress but thought maybe it’s too late AFTER the event and I wouldn’t have known how much to increase it by and for how long. At least I know it’s a flare and not a response to the tapering 2 weeks ago. I’m going to put it down to valuable experience, learn to take heed of my body and not to be a martyr. Hopefully the flare will settle on its own if it’s too late to increase the Pred especially as I think it’s a minor one.

[Zoesquare1]

Well all that would have certainly tipped me right over the flare edge!

I'm on 12 mg/day. Often I seem to be able to prevent a stress-induced minor flare from becoming a major flare by immediately reducing the stress and taking a mandatory day or two of complete downtime. If I can't do that and I know the stress or over-exertion will continue, then I usually find that a day or two taking 2mgs extra pred will settle things down enough. Doesn't have to be a big dose jump for me and the increased dose usually doesn't have to be taken longer than 1-2 days.

Not too late to take an extra small dose, in my opinion. Having said that, I Really restrict taking an extra dose (very rare) bc I don't want to get into a pred yoyo routine.

[magmapearl3 in reply to Zoesquare1]

It sounds like you have a ' crisis management plan' that you can fall back on when necessary which you've been able to test along the way. I'll certainly have to monitor things a bit more sensibly and be prepared to take a slight increase temporarily on occasions so thanks for sharing your plan. I was wondering what I would do if I caught a cold or the seasonal 'flu which I'm exposed to frequently working in a school. The doctor gave me a course of antibiotics to store and have on hand if I feel like I'm coming down with a chest infection which I had last year ( before the PMR diagnosis) but I forgot to ask her about increasing the dose of Prednisone if this happens. I expect an infection would mean an increase of longer duration? Thanks for replying Zoesquare1

[Zoesquare1 in reply to magmapearl3]

Hi magmapearl3. I guess I do have a crisis management plan! Makes me sound very organized, doesn't it? LOL. I'm not, but pain prevention is a big motivator!

Of course you've heard the saying: "life is what's happening while you're making other plans"? Sometimes I have to muddle thru and I take the extra dose. This weekend is 3-day holiday here in the states, and I'm way overbooked with activities . Am already feeling the shoulder burn, but must keep on, so this is a good example of a possible mini-dose-boost day for me.

[trish29 in reply to Zoesquare1]

Good Morning Zoesquare1 ..I was very interested to read your reply to Magmapearl 13 and it is certainly definite that Stress plays a major role in PMR flare- ups .. I have been up and down like a yoyo through the long winter months and although I still have problems I think I've just got a little bit of respite from flares at the moment .I have been using the same plan as Zoesquare 1 by allowing myself an extra mg or two of prednisolone when required..I used to be stuck on 14.05 or 15 mg steroid alongside 12.05 mg Methotrexate injections and i have also been back up to 16.05 but I am now staying on 13.O5 mg steroid for a bit longer because yesterday I had a meeting with my Rheumatologist who as Always was very kind to me and made me laugh when he said I probably could give him a few tips re managing PMR.. We decided that Methotrexate could be causing the flares and sore legs so its back to Amitriptyline to see if that can help . Like you I don't want to get into the habit of taking extra steroids unnecessarily . I was really worried before my appointment as my weight is always an issue and I hadn't seen my Rheumy since January and my weight gain was slight about a couple of llbs which he put down to water retention ..I have shed so many tears in recent months where I am in pain and can't walk but he made me feel good about myself and the way I handle this awful condition. I like what Magmapearl says about being a martyr.. I try and rest as much as I can because this condition responds so well to rest but even after 11 years with this illness I still feel that I have to push myself to keep up with others. Life is a bit better since I have two lovely ladies who come in and do things for me .. General housework ..ironing etc as I am too exhausted.. The help and advice from this Forum has got me through this awful winter and Kate Gilberts book has been wonderful to refer to. I also find that when I am having a flare or infection that I write how I am feeling in my diary and it helps to reassess things if I need to refer back .. All the best to you and good luck on the steroid reduction .. That's the good thing about this forum ..Everybody Cares trish29

[magmapearl3 in reply to trish29]

11 years is such a long time Trish29 ! I'm newly diagnosed so the idea of struggling with this for 11 years is a daunting prospect! I know some people appear to have it for life whereas others seem to be able to go into remission in a year or two. I would have thought that maybe you should be on a dose of steroids that would be controlling your pain better? I am so sad to hear that you have shed tears due to the struggle and pain although your sense of humour seems to be intact. The diary is a good idea and one that I might also try. I agree with you and many others posting on this site that it's wonderful and the best support for us all. Keep your chin up Trish29 and don't be a martyr !

[trish29 in reply to magmapearl3]

Hello again magmapearl13 ..fingers crossed you will be fortunate enough to have your condition fizzle quickly I certainly hope so. I have had better times and I've got down to 5mg steroid a few times but flare-ups just seem to occur and we are all different . Sometimes its trying to manage everyday life and a hiccup comes along . As long as I can pace myself and listen to my body particularly with the exhaustion I manage to get through the day. Our problem is that most of the time we look well but feel generally unwell inwardly. You say that maybe that I should be on a higher dose of steroid and Yes I get less pain if I go above 14.05-15.05mg but its defeating the object of reducing which is why when I can no longer take the pain I give in and start with an extra mg but sometimes I compromise with half a mg..I hate the extra steroid euphoria when I go higher and it seems to effect the water retention that developed through so many years on Pred. Sometimes I lose my sense of humour because I really do hate this condition but then I get days like yesterday when my Rheumatologist said well Done for managing and I'm always here for you .After many years of neglect by a previous medical team I can tell you that it was magic to my ears. The title of the post Trial and Error is certainly true .. I hope you have a nice Bank Holiday Weekend. trish29

[Zoesquare1 in reply to trish29]

Thank you for your reply, Trish29. I love that you write your feelings in your diary -- it must be helpful to look back and review the effects of various doses and activities (again, I'm interested in research, so that kind of "data" appeals to me.

You are so lucky to have such a supportive rheumy. That's a real blessing amid all the ups and downs of managing PMR. That you've been doing this for 11 yrs astounds me. It seems you are very good at managing-- getting help is so important.

I'm wishing you well today!

[Annodomini]

It's certainly a good idea to step up the pred dosage by a couple of mg when you have some kind of infection. For the past six months I have been beset by sinus and chest infections and initially didn't increase the dosage. My CRP went into the 40s, so the GP put my dosage up from 5 to 10mg. When the next infections hit me in March, I did increase the dosage from 10 up to 12 and my CRP and ESR continued a downward trend. It's been like life on a see-saw, but I think I have a grip on it now.

[magmapearl3]

Thanks for your replies Annodomini and Trish29 . It's always interesting and helpful to read about other people's experience with PMR/GCA. I'm in New Zealand Trish29 so no Bank Holiday for me unfortunately and it's coming into winter here. I'm originally from Yorkshire so I have the Northern European susceptibility to PMR factor ! One of the reasons I'm finding this site so useful is there's nothing equivalent in NZ. Sometimes the time difference ( it's 9.50 p.m. Saturday here) makes it frustrating when following posts or waiting for replies but that's just a small detail really.