where is everybody?

[kingharold11]

I have noticed that there doesn't seem to be much activity on here is it the weather or is everybody on holiday?

[PMRpro Ambassador]

It's something that happens on all forums - all it needs is a couple of days with noone with a new question/post and it suddenly goes all quiet! Many people only post in response to another post, no starting post - no answers!

In my case it could be the weather (20C at 10am and barely a cloud in sight) - weren't you all washed away in the UK yesterday?

[kingharold11 in reply to PMRpro]

We had rain yesterday morning (in Notts) but we weren't washed out by any means and it cleared up in the afternoon and was fine for the rest of the day don't believe everything on the TV. Don't know what happened in the rest of the country. On the health front I have been having problems as you know have tried upping the dose for a few days then slowly reducing, didn't work ended up feeling really bad again, aches everywhere dizzy, exhausted etc. so yesterday went back up to 9mg again am going to stay there for at least a week and see how I feel. Then I will try to very slowly reduce. Am seeing my rheumy on 18th June not that I think she will make any difference, the only thing she has ever carted on about is alendronic acid and osteoporosis which I refuse to worry about as I have enough other problems and don't have any symptoms. Wendy

[venezia1]

Here in Cumbria it rained all day! My poppies are all ruined...No further comment or the forum will turn into a weather forecast site....actually, that's not a bad idea!

My history - 5 years RA, two years GCA, need two new hips but can't get below 15mg on pred which surgeons don't like - yesterday I started on Azathioprine and stopped methotrexate. Concerned about the possible side effects of nausea and vomiting etc, but slept like a log,(unusual) and this morning woke with worse joint pain than usual, and feel dizzy and trembly. Early days I know, but has anyone any info about this drug, which I'm taking to try to reduce the pred? e.g. how long before benefits felt etc?

[PMRpro Ambassador in reply to venezia1]

I think most of these things take some time for the effect to be apparent - always supposing they do help, which in itself is questionable. How have you tried to reduce? Many people seem to be very sensitive to reducing their pred - and steroid reduction causes problems that are so similar to the original problem that it is difficult to know whether it is a flare or the reduction - but several have managed to get lower than ever before by spreading a 1mg reduction over a few weeks. I have never been below 9mg without return of symptoms until I did that - now at 5mg and falling - and a consultant in the northeast is also trying MrsK's version of my dead slow and almost stop scheme and having success.

The best place to look for info about azathioprine may be an RA site as that is the typical place to use it.

It may be worth shopping around - some surgeons will operate on people taking pred, realising it may make things even worse to insist on getting off it and I do know people with new hips who were still taking 10mg at surgery for exactly that reason. After all - is there any point in saying less pred only to have a poorly patient who can't do the rehab? At least 2 ladies had their new hips and were off pred within 18 months - they noted an immediate improvement so we wondered if the reduction in pain contributed.

[ritter in reply to venezia1]

venezia 1&wendy

[bowler in reply to venezia1]

I saw my Rheumy last week who was concernd about the length of time I have been taking Pred, [ 14 years ] and my frequent flares of GCA,[ I am having another flare at the moment ] After having a lot of thought I decided to try Azothioprine [ I did say I wouldn't take it after reading about all the side effects,] but thought " if I dont try it I wont know" I tried Methotrexate several years ago but that didn't suit.

So ar so good, but it's early days yet as I only started them 5 days ago. I take the tablet after my main meal on a full stomach with a glass of water.

It will be interesting to know how my blood work is when I go for a blood test on the 17th. June.

I understand that it could take 2 to 3 months to get any benefit ? The leaflet that comes with the drug should give you some info about side effects/etc.,

The Rheumatologist gave me a lot of info on it [ 9 pages ] to give to my GP which I printed off and kept a copy for myself.

Keep in touch as to how things go.

Regards bowler

[Runrig01 in reply to venezia1]

I was started on a Azathioprine 4 months ago as a steroid sparing drug. I am now on 125mgs daily and have suffered no side effects with it. I have Atypical PMR and Undiagnosed GCA type symptoms. The Aza has definitely helped me reduce Pred was on 9mgs in Feb now on 5mgs. I have not had any problems with my muscle pains during reductions, but the other GCA type symptoms it does not help. In fact as I reduce Pred more GCA type symptoms have appeared-vertigo and cramp in right arm since early April. I have decided to stop at 5mgs till Rhrumy or Neuro give answers for all these symptoms. But for simple PMR symptoms Aza is definitely helping, I'm due to increase next week to 150mgs. Hope it works for you

[ritter]

Hi venezia 1 and wendy,ritter here,yes it rained all day in the north east village called Norton,near Stockton on tees,did not get out with dogs as it was really poring down dogs fed up and me too.having said that am down to 7mgs next Wednesday yipee no problems yet still have pain in back to be expected seen rhumey last week and my spine reads like a shopping list TIw T2w then T6 to T12 and L1,so you can imagine the pain from that lot,but its not all bad feel quite good at the moment,ashed Rheumy about adrenals and he said they must be ok otherwise you would feel really ill,not sure about that remark,I still feel very tired most of the day,goingb to see GP on Tuesday see what he says, well girls it looks like a short sharp shower is on it way,will talk soon,kind regards to all of you Anne xxx

[kingharold11 in reply to ritter]

We must have missed all the rain here in the midlands it was fine for the rest of the day after rain in the morning. You say that you feel tired all of the time it would be interesting to here what your GP has to say. I've had PMR for 3 and half years and apart from the first six months before I had to reduce the pred I have been tired and dizzy most of the time. I have had a synacthan test to see if my adrenals were OK and they were. best wishes Wendy.

[daveD]

LO.I am thinking a lot of folk might be infront of a big Mirror dabbing there DRY skin. being a old grump with skin like sandpaper its something i have to live with.I have been pottering in the garden in between thunder storms. I am thinking it is a good sign when when not a lot of posts. the sun has just popped out from behind the clouds so time to potter. Best wishes to one and all Dave.

[trish29]

Hello kingharold 11. I've noticed this as well and I thought I had a problem with my i -tablet.. It seems strange as there was so much activity before.. Hope you are better today .. I'm still sore from my visit to the osteopath but I'm managing to get my feet to the ground which I haven't been able to do for a while .. No flare-up thank goodness.. I'm having another quiet day .. Love trish29 x

[polkadotcom]

As PMRpro said, weather is good, little rain here on the south coast and I have been out fluffing up my flower beds. I do check several times a day to make sure that no one is ignored.

Got a Rheumy appointment on Tuesday, hoping for some answers about my leg problems. but if answer comes there none I'll just carry on as I have been doing for the last two years! It probably won't be helpful anyway as I have now got severe osteoarthritis in my left hip and right knee...........leaves me without a leg to stand on at times.

[Trenny in reply to polkadotcom]

Good on you for your sense of humour, polkadot. I haven't been online because I have been concentrating on reducing Pred from 12.5 to 11.5 mg by the slow method. Nearly at the end now and wondering whether to risk another 1mg reduction or to be safe and go to 0.5mg reduction. Only I can decide! I am feeling very weak walkingDiag. with GCA in Feb 2012.

[iforget]

I have been trying to get to grips with this latest flare. GP checked bloods CRP = 44 (considerably raised from last test) and ESR = 78 (a slight drop on the last one) and decided best course of action was to increase pred for a while to try and settle it down. We agreed on a 2mg increase to see if that would do the trick (I don't want to jump right back up and have to fight my way down again) and it has helped (after about four days) but things are still not settled and the lower half of my body in particular is still very unhappy...add in the sudden heat rise and I have elephant cankles so I am hot and grumpy and not fit company. I have been checking in to see if there new posts but I had nothing to add and would have only been moaning if I had posted...

Hope everyone else is doing okay?

[PMRpro Ambassador in reply to iforget]

Many doctors feel the way to deal with a flare is to add 5mg to the current dose until the symptoms are under control and then reduce faster than you would usually to the previous dose where you felt well: so, for example, if you were now at 6 mg you would go to 11mg for a week and then go back by reducing 1mg every couple of days to 7mg.

But having a moan is also fine if you feel a trouble shared is a trouble halved - we all know what it is like so really can empathise.

[Skinnyjonny]

It rained in the North East but our Durham Raft Race went ahead and was an amazing success. The downpour would not dampen our spirits ... a bit like having PMR! Keep smiling and dancing in the rain

[jinasc]

Anne

There is a support group quite near you and its next meeting is on 2nd July at 1.30pm. The Guest Speaker is Skinnyjonny.