Back again after a while

Not bad these Taureans then!

Feeling ok today , drinking plenty , so hoping it was a false alarm.Cant take cranberry juice apparently while I am on Warfarin.

Pity as I used to drink it a lot before then.

Cheers Amycakes.

Hello Amycakes

I am only catching up now as I lost the will to live trying to get into this site a few days ago !!

Pleased you are making progress I am heading to 3mg but managed to fall over hurt foot wrist and all sorts so as bloods were up a bit Dr said to go carefully for now I am 3 yrs 3 months in now to this bout

My husband and I will both be 65 next year so hope I will be fit enough to go somewhere to explore a bit as all my holidays at present are to get extra Vit D !!

Hope you havent got another infection but it does seem common for people on steroids to get them

Best wishes

Rosemary

Thanks Mrs G.

So sorry you have fallen, as doc says take care.

Lovely that you are on 3 mg, hope this time it does the trick for you.

The U.T.I I thought I had has'nt materialised , so good news there.

I remember sometime ago that I had frequent urination, & I think that was caused by the steroids , as I feel it does give you water retention , hence the swellings on the body, so I am thinking along those lines again.Maybe my body s trying to get rid of the water .

Take care of yourself & thank you for replying .

Amycakes.

Oh you are so lucky to have got down.

I was on 5.5 daily until my husband had to have an urgent op 2 weeks ago. He already has parkinsons disease so life is quite stressful anyway.

woke up one morning and really didn't want to live. So I upped to 8 but with no joy so I am now on 10 since Monday and feel fab. Obviously having a flare up, first one ever in 2 years. How long do you think I should stay at 10 before going down again. I certainly don't want to go through that pain ever again. I forgot what 'that' pain was like.

Koukla

Hello Koukla

I'm sorry to hear that you've had a blip and had to increase back up to 10, but as you now feel so much better it does prove that you did the right thing.

I also had a massive flare around the 5mg stage, and, like you, about 2 years into PMR. It may help you to know how I managed this on the advice of my rheumy:

Increased Pred to 10mgs for 2 weeks, then 7.5 for 2 weeks, then alternate days of 7.5 and 5mgs for 2 eeks, then 5mgs for 10 weeks. At this point my ESR and CRP blood tests readings had returned to normal. I was then advised to stay on 5mgs for another 3 months. As this was the point at which things went pear-shaped previously, the idea was to keep me on this level for a longer time to ensure that the inflammation was totally under control before reducing further. Following this I continued to reduce but only in 0.5mg decrements, staying at each new dose for 2-3 months. I did still yo-yo a bit up and down between 5 and 3 for a while but it seems that 5mg is a sticking point for many of us.

I'm sorry to hear that your hubby has Parkinsons - we had friends visiting for the day yesterday and the chap has Parkinsons so I know exactly how difficult like can be with that. It's possible that th stress you suffered as he went through surgery triggered your flare. I do hope both you and hubby will feel better soon.

MrsO

Hi Koukla,

So sorry to hear about your husband,do hope he is feeling better now, Stress seems to be a trigger I guess for flare ups.do hope you too will improve soon.

Take care

Amycakes

Koukla - welcome back ;-) Hope you can find your way about this new version :-( Also very sorry to hear your husband has been poorly - is he recovering OK? That is quite enough to cause a flare and MrsO has suggested your next step to reduce. It really shouldn't be too much of a trial getting back to where you were providing it was the stress that did it - not like the original reduction. What does seem to be important is to hit it hard - 5mg above your current dose is what experts suggest and then reduce quickly. Just edging the dose up a bit and a bit more when that didn't work is fraught with problems and you do better upping the dose noticeably and then reducing as noticeably.

Good luck, all the best to t'other half and hope he's lots better soon - well, within the confines of the Parkinson's. How has he coped?

Eileen

Hi

thanks for that advice. as for hubby he is only 54 and has parkinson's for 10 years. 4 years ago we went for deep brain stimulation which helped initially as he took less medication, he was nearly at the top dose. he falls over a lot and I feel useless at times when my shoulders are bad and can't help him up. of course I have to do a lot for him like prepare meals for when I'm at work and I haven't had a cup of tea made for me for ages its tough but thats life. thanks for asking not many people do.

love Koukla

Hi Koukla

Apart from the friend I mentioned the other day, I also know of someone else with Parkinson's and as he is not responding well to his present medication, he has been put on a list for brain cell stem surgery of some sort at a London hospital. I believe this procedure may still be in its infancy but thought this information might be helpful although do apologise if you are aware of it already. It is difficult enough coping with PMR without having the added stress of watching a loved one suffering but sadly that seems to be the case all too often - my heart goes out to you, and let's hope that better days are ahead for you.

MrsOxx

yes it's being done at the same hospital the national neurolgical Hospital in Queen square we did ask but because he has has DBS and has implants he can't have it yet until they know it works well for others

its all very interesting

Koukla

Koukla

Something positive to hang on to then - fingers crossed for him.

MrsO