It's been a while!

[JulianJ]

Hi folks,

I haven't been about for a while, nothing wrong, just not logged on!

I got down to 7mg several weeks ago and then took a holiday as last time I tried for 6mg it was very painful and I didn't want that again.

Well last night I took the first step on heading for 6mg. To my surprise my neck is feeling better than it has for a while. My knees are a lot better than they have been, I can straighten my legs again, haven't been able to do that for weeks. That wasn't so bad, but the stress on my calves was a tad unpleasant to say the least.

I have to admit I am apprehensive after my last stab, but then I was following doctors orders and going down 1mg every 4 weeks, not doing that now, i'm in control.

Well here goes 6mg, with the doctor ready to give me a script for 2.5mg tablets if I feel the need to go for 6.5 instead.

[markbenjamin57]

Hi Julian

Thanks for the update, I was wondering what had (or hadn't) happened to you recently!

All sounds pretty good from what you report, and my own similar experience of these things! All I can say is that the Pred reduction process / Journey is invariably a case of Trial and Error, despite the best / most recommended advice on methods (e.g. DSNS).

And.. as you suggest, the best Expert is probably yourself in terms of knowing how you react (+/-) to the combination of your PMR Symptoms, making sense of any aggravating factors, and / or your efforts to manage them simultaneously. Ohh, the stuff of Brain Ache for many of Us Lot?! ;-/

Keep going on the 'Slow' Race to Zero Pred, and keep us posted. Fingers crossed for you!

Best wishes and keep smiling on the PMR Journey

'Uncle' MB

[JulianJ in reply to markbenjamin57]

Thanks Mark

Keeping smiling is a big part of my life, it's easy to look at all the stuff i can't do instead of what I can. I've spent more time on one of my hobbies this year than I did all of last. It was hard work walking yesterday after the efforts on Sunday, it didn't feel like I was doing anything much, but Monday told me I had.

I do try to keep track, well remember, all the little things that are going on, what pain is an old one coming back etc. And yes it is a brain ache on times, but good to know what is new and what is old.

My biggest problem is standing up from low seats / bed, that hurts my knees and shoulders, but I have to get up or the game is lost!

[Soraya_PMR in reply to JulianJ]

Chair and bed raisers might give you 4” of ease?

[JulianJ in reply to Soraya_PMR]

I've just taken a look at some of these, they look good, but for my bed it looks like a bit of DIY will be needed, job for the weekend I think

[markbenjamin57 in reply to JulianJ]

I can relate. Standing up straight, bending, leaning, sitting for long periods, stretching etc - even at close-to-Zero Preds - can still seem like a massive effort sometimes after a long and debilitating illness of whatever type.

But I agree: a bit of gentle and sensible 'pushing through it' physically and not giving-up completely can only be good for the Body and Mind. A sense of 'Yes, I CAN do' it must be a good thing.

And, as you say, keeping a healthy SOH helps too!

[Soraya_PMR]

Good luck dropping to 6.

I stayed on 9 for 6 weeks, as felt ‘wobbly’ (rather than 4 weeks as indicated by rheum) I did a straight drop to 8, eleven days ago, and no steroid withdrawal pains for the first time ever! Still not sure what happened, and keeping fingers and toes crossed I stay ok on 8, so far so good.

I think you’re right about being ‘in control’, well as much as PMR lets us, rather than all the clashes with doctors.

[markbenjamin57 in reply to Soraya_PMR]

'Miracles' CAN happen - even with PMR.

Keep on carrying on - and it's sometimes better to trust your judgement than that of people / some medical professionals who might know less than you about the complexities of PMR or GCA ..

[bunnymom]

Great to hear your progress. Next to decreasing pred our next order of business is to slowly get our muscles going again. I realized the other morning I can now lie in bed upon waking and not have to jump up to take pred because I feel so bad. What an eye opener and a good one at that. I feel I am making great progress. I am at six.

[Peggles in reply to bunnymom]

When does this happen???

[bunnymom in reply to Peggles]

For me...I am now at 6 and don't have pain just stiffness. I know you hate to hear it but we are all different but take hope. I do get very tired for a few weeks when reducing but not pain.

[SheffieldJane]

I cut my 1 mgs in half. This is a really tricky drop I find. Nice to see you again! You’ve missed a lot of high jinks from some quarters. Good luck with your taper. I am right there too.

[JulianJ in reply to SheffieldJane]

I can't cut mine, I'm taking gastro resistant at night.

But the doctor will give me some 2.5mg if I need them. With them I could get to 2 in .5 mg steps. Time will tell, see how I feel.

[enan-illuc]

Julian,

I am also at 7mg and am ready to drop .5 mg to 6.5mg in about five days. I think the slow method is best for me. Good luck to us both.

EI

[JulianJ in reply to enan-illuc]

I'm taking it slowly, I went from 6mg back up to 9mg at the end of September. No rush here, been there done that, not doing it again!

Good luck with your reduction.

[DebbieF1603]

I also started 7 down to 6.5 yesterday. Long day and crashed out at the end of it but that’s my normal! No other aches and pains.

[JulianJ in reply to DebbieF1603]

I only took 6mg for a day, now on 7 for 6 days.

No issues on the first day, see what comes as I progress through this taper.

[GCA1947]

Julianj

I've only got GCA-You should get the 2.5 mg tabs because it makes going down in half mg steps so much easier. I've been at 6.5 mg since 27th April having come down in half mg steps since my flare finished in October 2017 when I was on 10. Half a milligram is much easier for the poor old body to get used to and works for me. I flared at 3.5 mg in July 2017 hence the half milligram steps this time. My Rheumatologist wants me off Prednisolone as soon as possible no mention about levels of inflammation so I may have a fight on my hands. According to the leaflet in the box of Prednisolone the maintenance dose is anywhere between 2.5 and 15 mg but Doctors have not found a maintenance dose for me so my journey has lasted so far for four years and three months. I will suggest to Professor Watts (Rheumy), that I stop at 5 mg. That should go down like a lead balloon.

Sincerely hope yours works for you

Regards

Colin

[JulianJ in reply to GCA1947]

Hi,

I'm glad my doctor listens to what I say and hasn't, yet, disagreed with me.

At the moment the 7 to 6 is runing okay, only taken a single dose of 6mg. If I have any issues, I'll hold on 7mg and get the 2.5's.

I'm feeling better after the single dose, don't know why, but I do. Strange how things work.

[DorsetLady PMRGCAuk volunteer]

Hi Julian,

Boring I know, but I’m going to say it anyway.....reduce as slowly as you can. Each reduction as you get to lower figures becomes bigger in percentage terms - and as many of us have proved the difference between 1mg and 0.5mg is very real.

So juggle your tablets - even if you find you need to get a supply of uncoated 1mg for some drops - and use a slower taper - If you don’t already, although if memory serves me right I did forward mine to you previously.

Take care.

[JulianJ in reply to DorsetLady]

Yes, on your taper. I dot to 7mg and took a holiday for a full cycle. Last time at this level I had a flare and am only now back down, slow and easy.

I've got uncoated 5's, but next time I speak to the doctor I'll ask for a few boxes of 1's. Good to have if I feel the need for the extra without the wait. I think I will also go down in 0.5's after this one.

As you say, slow and easy, that is one thing I have learnt from this forum.

[Leilagirl]

Thank goodness for the site as we are en powered with knowledge based on others who have been through it before. Best of luck!

[JulianJ in reply to Leilagirl]

People talking about their experiences and of course the "aunties" is really good.

So much knowledge available to us as well as the help and support from others suffering as we do.

Finding this place was great, would hate to think where I would be without it.

[Polywotsit PMRGCAuk team member]

Hi Julian. Good to hear. It may just be that the disease is leaving your system and you are recovering. Good luck!

[JulianJ in reply to Polywotsit]

It would be nice if it is, but I won't be thinking of that,

[GCA1947]

Julianj

My 6.5 Pred. doesn't seem to be working for me because I'm getting repeats of symptoms I had originally. Aching forehead but just over left eye, aching sinuses below my left eye and upper left jaw. I had CRP tested yesterday morning (04/05/18), at the surgery and will get result on 08/05/18. LFT's test yesterday as well. My Healthcare Assistants are very careful LFT's have been raised for ten months. The only item that was raised was my CRP in July 2017.

I've just realised that my first flare happened at end of July 2017, when Liver Function Tests started to misbehave. As far as I am aware I have not got anything wrong with my Liver and to check Ipswich Hospital has tested everything that is attached or near and nothing has been found. I'm seeing Gastroenterologist on 09/05/18 for my 4-month recall so I may find out then. Original diagnosis was that a Gall Stone detached itself and passed through my tubes causing the raised readings, though why it has continued to raise readings after all this time I just don't know. They were still raised on 24/04/18 my last monthly blood tests.

The bulk of my low doses are by way of un-coated 1 mg tabs and they don't notice going down. But that may have something to do with 40 mg of Omeprazole that I take every morning because my system produces too much acid. The 2.5 mg coated tab doesn't notice going down at the same time. I hope you find a solution to your situation.

Regards

Colin