Effects of steroids

I bet Gone Girl wished she'd never asked.

All of us in "The PMR Pred Club" apart from the few fortunates will have some side effects FACT!!. For me any side effect beats not being able to get out of bed, shuffling to where ever I want/need to go, taking forever to get dressed & I could go on & on, but won't. We all have our cross to bear but we need to stay positive & if possible, KEEP MOVING!!! Without Prednisolone I would still be laying on my bed. Just done my second taper from 25mg to 20mg, started PRED mid June (30mg.) my side effects have remained faily constant throughout, I will live with them for the rest of my days, if thats how it has to be.

Constance I imagine that Gone Girl has so much to go on now she will have come up with a very well informed & balanced conclusion.

ATB to all who read + contribute to this forum, long may it continue be a great sourse of information & support to each & everyone of us.

Richard ( Mr Solo UK Lancs.)

 

 

I so agree Richard, I lie in bed now and still cannot believe that I have not got that excruciating pain, so I literally could not move without that horrible muscle pain. I also have lovely curly hair and super nails. I am not sure that is so important to men though! 

Well there is a support group operating in the North West, follow this link to the pinned section on this site http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

 Then follow the link to the North East Website and you will find out where it is located and a lady called Ann Chambers.

Well I can add to that list and include ending up in a wheelchair etc.

There are 82 listed side effects and two more common ones not listed, called 'treacle brain' and 'steroid brain fog'.

Did I care about the wheelchair and other side effects, nope, pred saved my eyesight.

5 years down the line, remission and now well into my 4th year.  

No wheelchair, no zimmer frame, no walking stick and for the last two that is because of Bowen Technique, the wheelchair was a very very rare side effect of pred.

Hallo Richard.  Can't remember hearing from you before.  Don't you think, however, that it might frighten the life out of some of the newcomers?

Totally agree with your last paragraph.

Constance

I wonder!  Is the wheelchair so very rare?  It would be interesting to find out how many of us had to resort to one at some time or another.

I have encountered on other, who like me, was in a wheelchair off and on for some months.  I have yet to meet anyone else over the past 9 years and I do so hope never to meet anyone either.

Just so you don't think I don't know many people, I am a member of a charity and attend a support group.

Last paragraph, I know and admire your commitments.

As I mentioned, I had to resort to a wheelchair after a few months into PMR. I only used it a few times as my husband was 77 at the time and I was afraid of HIS health.  It made me concentrate on my rollator, which I still use and think I always will from now on.  It makes me feel so 'safe' as I can always sit down if I feel tired.

Constance

Yes, I have my eye on a rollator as I find there are less outdoor seats around these days and my 'getting older' bones don't want to keep going like they used to do.   As my Mam used to say, 'old age never comes alone, it brings along unwanted friends'.   Us usual she was right. I only wish rollators had been around when Mam was alive.

I did wonder if you knew, but was unsure - put it down to memory cells going walkabout. 

 

Do buy one!  They are great, and not expensive.  At first I was a little embarrassed, but not any more.  If I get tired I find a tree or corner and just sit down, no matter where it is - even in a shop.  Get many smiles and even envious looks (from old people struggling along).

Three years ago I had just about decided to get a mobility scooter if things didn't improve soon - at the tender age of 60! The rollator wouldn't have helped me then, the pain was in my hips from walking at all. There is one very neat little thing that folds up - German and pricey of course but it would have been worth it to be able to get further than just the village. You have to be almost dead to get a blue parking disc here! And the disabled spaces are never close to the shop door - which seems to miss the point a bit.

Still regret not having got one - would have been brilliant for shopping with the camper...

I know the scooters, they even fold up for the car.  Am still contemplating one, not the cost, although they are expensive , but with our new flat we have no garage, and you can't keep such a thing outside in the winter.  Such a nuisance!

Yes - didn't I give you the link before you moved? Keep it folded in the car boot - I assume you have one? We do have suitable storage - but the best thing I did in the flat was a handmade bed which is basically a box with bed slats on top. TONS of space under it for the things you need seasonally. Leaves space elsewhere for other things.

Forgot to say - same here for parking discs.  They do a lot in Germany in the national health system, but if you are disabled you have to fight for any appliances.  Great for re-hab though!

Never thought of the car boot!  Afraid it may be a little heavy though, OH is 80 now and I NEED him!?!?! (As well as I love him to bits).

Our new flat is only 65qm, 28 of which is sitting room, so no space for an extra bed.  

Same size as ours - and ours includes the balcony and cellar! 

Car boot - and both of you lift it in and out?

Yes I used a wheelchair last year, due to PMR symptoms. Friends used to think it a great joke pushing me round. I stagger around OK nowadays without one. 

Use a rollator (or walker, or whatever it's called in the UK).  You won't regret it.  It takes the "staggering" away.  You walk up straight and can walk at your own pace and not shuffle.