Flare-up!

Poor you! I know just how devastating these flare-ups are and just how low they bring you. The consolation with Pred is that once you are on the right dose it does then make you feel that you can cope, even if it is with a sigh of resignation and a feeling of \"back to square one\". I found that the only way I could manage the time between was to concentrate on each day as it came along and try not to worry too much about tomorrow. I did try to arrange little treats, I'd ask myself if there was anything that might make me feel a little better or give me something to look forward to, but it's sometimes difficult to focus on anything other than the aches and pains and general depression. I so hope you begin to feel better soon, do take it a day at a time.

Shastajak

So sorry to hear about your flare-up with which I can so sympathise having only just had the same experience and increased back up from 3 to 5mgs a couple of weeks ago, and this is exactly where I was over a year ago!

To use your words of \"frustrating, depressing and a feeling of having made no progress\", they echo my thoughts exactly two weeks ago, but somehow we seem to (or maybe it's just because we HAVE to) accept the situation and, as Nefret says, take one day at a time.

Take good care to get plenty of rest during the flare-up and until your new dose kicks in........hopefully, if the blood test results on Friday show that the inflammation is not too high, then you may only have to go up to, say, 15, and it will probably only be for a short time. If I remember rightly a year ago, I had to increase back up to 10 for only 2 weeks then down to 7.5 for 2 weeks and then 7.5 and 5 on alternate days for 2 weeks until back down to 5 (I had to make good use of the calendar, as you can imagine!). It appears that once you have lowered successfully to a certain dose, then even though you may have a flare up it is quicker to come down on the increased dose next time around.

Also, as Nefret says, a special treat can help or even a good old get-together and laugh with close friends.

Good luck and let us know how you are getting on.

MrsO

Shastajak

So sorry to hear about your flare-up with which I can so sympathise having only just had the same experience and increased back up from 3 to 5mgs a couple of weeks ago, and this is exactly where I was over a year ago!

To use your words of \"frustrating, depressing and a feeling of having made no progress\", they echo my thoughts exactly two weeks ago, but somehow we seem to (or maybe it's just because we HAVE to) accept the situation and, as Nefret says, take one day at a time.

Take good care to get plenty of rest during the flare-up and until your new dose kicks in........hopefully, if the blood test results on Friday show that the inflammation is not too high, then you may only have to go up to, say, 15, and it will probably only be for a short time. If I remember rightly a year ago, I had to increase back up to 10 for only 2 weeks then down to 7.5 for 2 weeks and then 7.5 and 5 on alternate days for 2 weeks until back down to 5 (I had to make good use of the calendar, as you can imagine!). It appears that once you have lowered successfully to a certain dose, then even though you may have a flare up it is quicker to come down on the increased dose next time around.

Also, as Nefret says, a special treat can help or even a good old get-together and laugh with close friends.

Good luck and let us know how you are getting on.

MrsO

Yes I am also sorry to hear your news You feel as though you are making progress and then wham its back !! I am on my 3rd time of trying to get lower than 7.5 The Ist twice I knew after 4days it wasnt working This time I have done 7.5/6 for 10 days and fingers crossed I feel OK but then yesterday I felt exhausted too tired to even email you last night !!! Off for a blood test today again and we shall see People dont seem to understand why we are loath to increase the steroids they dont realise how long it might take to get back down again to where we were As with previous advise rest seem to be what it all about a lot of the time Hope you dont have to go up too high Best wishes

My CRP and SED results came back as \"normal\", I saw my GP two days after the blood test and I still had a lot of pain in my arms and legs. He is referring me back to a rheumatologist as he thinks I may now have fibromyalgia.

Strangely enough the following day my pain disappeared like someone flicked a switch. It was 8 days after I'd increased the pred to 12mg - about the same amount of time it took to take effect originally. I've been more-or-less painfree since although I have no energy whatsoever. It keeps crossing my mind that I may be suffering from depression - isn't it a side-effect of pred?

I'm also wondering if somehow if there was a couple of days delay before my symptoms caught up with the actual state of my body. I'll just have to wait and see what the Rheumy says.

Yes, depression is a side effect of Pred and I believe it's also a side effect of PMR! I've been battling with it for a long time. Even though you feel lethargic, do try to get outside and walk even if it's just for a few minutes, and do it as often as you can. Just a trip round the garden or the block can make a difference. I've also found ginseng and St. John's Wort helpful, but do make sure your doc knows what you are doing - and why, in case there are any contra-indications with any other meds you may be taking.

I've also found it helps to keep my hands and mind occupied as much as possible - it makes no difference what it might be, whether it's watching soaps on the TV, knitting something complicated or reading.

It's one of the (many) reasons why I'm trying to minimise the Pred dose - in my case it's now causing more problems than the benefits are worth.

Good luck and best wishes,

Nefret

Thank you for the tips Nefret. I have to walk at least twice daily as I have 3 large dogs - they are wonderful motivators for getting me out of the house. I have a pocket sized camera which I take with me and use that as an excuse for walking more slowly and stopping frequently. :wink:

I also like to get out in my garden and photograph the flowers and then spend a lot of time on my computer going through them. Before I was first diagnosed and had a month off work, I really got into jig-saws. I love reading and always have a book on the go, I love knitting and crochet, but I'm not a great TV fan. I'm going back to work on Wednesday as I'm feeling so much better. I hope that it will kick start me - to get back into my regular routine.

Jak

Glad to hear that you are feeling good enough to go back to work and lucky for you that you have dogs - I've only a cat who turns down any suggestion for a walk. It is the one thing I find difficult to sustain - I have to have an objective, can't walk alone for the sake of it, so I try to turn every errand into a walk. The camera is an idea though, I will consider that (not very camera minded) so thank you for that!

Before I was diagnosed when I was really very ill, I built, decorated and furnished a dolls house - something I have always wanted. It really doesn't matter what the occupation is as long as it it riveting! I have a very, very bad book habit and keep running out of fixes, as I can read and knit at the same time it gets expensive and the constant search for \"something to read\" gets trying! (I don't do any telly, either).

Hope you keep up the improvement, do let us know.

Nefret

When I was first diagnosed with PMR I did an awful lot of sitting around feeling sorry for myself but have now learned, reinforced by everything the rest of you say, that I need to have at least one expedition out a day. Just walking did feel strange, Nefret, as you say - I feel as if I'm going so slowly!!! I felt very self conscious about neighbours watching me. Luckily a bus stops pretty much outside the door and I get it into town and can either window shop slowly or visit the library (averaging 4 books a week). Yesterday I felt so miserable, worse because it was my birthday, and thought I had just done too much, but reading other's comments I think maybe it was just that it seemed so wet and COLD :cry: And today I am still feeling it. But basically, in my case, I was much more depressed before I was on Pred. than once I started on it. Can't knit though - makes my shoulders ache. Saw physio today who used a little machine that gave me tiny little electric shocks in my neck, didn't hurt and felt better for it. I asked whether it was similar to acupuncture and she got very enthusiastic about that and said a lot of physios use it (acupuncture I mean). But people can be suspicious apperently because of all the complementary therapies that are a bit more mumbo jumbo! Anyway this was done through my GP. He is also going to do more blood tests as he think I should be responding more to the Pred. - this is to do with fatigue rather than pain which is not too bad at all. just a dull ache more than anything.

I might try ringing round health clubs to see what temperature they keep their pools at - just as swimming is getting free in council run pools for the over 60s!! The thought of changing and shuddering as I get into the water has put me off so far! But what varied lives everyone seems to lead. I suppose where there's a will there's a way. Marvellous!

Keep going everybody, Green Granny

I'm finding my camera quite addictive and the beauty of digital ones is that you can take as many pictures as you like and can see the results instantly. You can even tweak them with image enhancing software, but I admit I'm of the \"that's cheating\" school of thought (most of the time!). At the moment I am fascinated with water droplets in my garden. I love taking pictures of my two cats as well.

Green Granny, I also felt more uncomfortable yesterday and put it down mostly to the change to cold and wet weather but also to the fact that I had a birthday on Friday and burned the candle and was out and about here there and everywhere for a few days, and needless to say it caught up with me. I could not stay awake in the chair after dinner yesterday so I'm now trying to relax a bit and give some respect to the PMR! I did try returning to the pool last year but found it too cold not being able to move fast enough to get warmed up. As I'm now increasing my mobility and movement from attending Tai Chi classes, I may give the pool a try again during the summer. Definitely recommend Tai Chi to everyone out there.

From one Taurean to another, Happy Birthday for yesterday Green Granny!

MrsO

I am really sorry to hear of your setback. In time, once you get the right dose of Prednisolone you will feel fine again!But it can be a slow process!

I've had PMR for 3 1/2 years now! Mostly I feel fine though I worry about the long term effects of steroids. Sadly, just when I thought it was time to wave good bye to PMR I have suffered another flare-up! My newish GP is not certain it is PMR but I am! It feels the same as before!! In the meantime I am stiffening up again and am going to increase my own dose before I go away on Monday. I dont have time to wait for GP to get the blood tests! In any case I expect these to be borderline, if that, as my ESR and CPR were never very high. This does happen! I do feel frustrated by the time it has taken from reporting the symptoms, which in any case are getting worse, to being authorised to take the right dose to relieve the stiffness. At its worst it makes me feel like an old old woman before my time!

I never actually communicated with someone else who has PMR, I have had it for 3 years with a diagnosis 2/2/11 starting prednisone at 20 mg then stayed at 10 mg til now. The prednisone gave me a big relief in less pain in shoulders and legs and less stiffness plus able to eat and become less anemic.

Now this week my ESR is 120 and seem to have an upper G I inflammation with esophageal spasms and great difficulty swallowing

I don't know yet what the treatment will be and will see my rheumatoid MD by Friday