coping with the pred drop

[Sue8]

Hi all, I hope you are all relatively good. I have now been on 17.5mg pred for 3 days after buying a tablet cutter. Hopefully the doc with give me different strengths when I go on Tues but for now the pill cutter is good. I do have some degree of stiffness returned in my neck and the odd sharp pain in my shoulders and shoulder blades but all is copeable for now.

My new pup is keeping me on my toes and of course as he is mine I have to get up with hubby at 6am to sort him out (pup not hubby)

I also think some of my achyness is due to me sewing a lot. I hand embroider tote bags and have a facebook page to sell them on. I do kids and adults and personalize with names on one side and a transfer character on the other. I have done a cake stand of cupcakes on one also which takes time. So I am sure it is not helping with the achy neck.

I have been asked to do personalised Santa sacks so ordered 8 and already have 6 orders for them so no rest yet. lol

My hands and knees have been ok the past few days so that's good.

I just want a nice lie in to catch up on sleep but not a lot of chance of that this weekend as they have asked hubby to go in work for 6am tomorrow so up at 5am so he expects me to do the same

Anyway I will love yer and leave yer for now, have a great weekend and above all...............

Keep smiling xxx

[Hidden]

Well done Sue. You are doing really well. I wish I felt the same, but since I dropped to 7mg I have gone from bad to worse. My partner and I motored 25 miles to Exeter tonight to do a big shop. I felt a bit weak when we left, but OK when we arrived. I told him I would try to do the shopping on my own and off he went to browse the other shops in the area. Half an hour later he arrived back, expecting me to have finished and be waiting for him. I was not there. I was in fact virtually on my knees in the middle of Tescos, hardly able to stand and, thank heavens for mobiles, asking for help.

I can hardly believe this has happened to me. What the hell has reduced me to this. PMR, pred or both?

It seems that the lower I drop the worse I feel. My partner says that I must reduce by only one quarter or a mg in future. He sees me go through this and I think he might be right.

Sorry to be such on such a downer.

Pats

[Sue8 in reply to Hidden]

oh Pats no.................... this blasted illness really takes over our lives doesn't it?. I have my shopping delivered as I don't drive and to be honest I don't know how I would cope doing it in a supermarket.

I spoke to soon last night, I have woke this morning with what feels like a flare. My arms are like lead weights and painful and my neck and back are hurting.

So do I increase back to 20mg or see how I go? Not sure what to do.

You however rest up and increase your pred back up to a level that you were good on.

Take care Pats.x

Sue

[janimaths in reply to Hidden]

It really is the most frustrating/infuriating thing this PMR. Your episode sounded so like mine some days after I got home from Sicily, and found I could neither stand up nor sit up (so no PC) without truly awful pain and spent 4 days lying on my back and hobbling about the house. Getting results of a scan soon, but clue is that I woke in the morning with it, and now think its not a slipped disc - PMR again. Son, who has an eye condition which precludes him from driving, took a taxi 20 miles to here in the emergency and stayed for the best part of a day to give help. I am coming to the realisation that really we women have to treat ourselves like babies in swaddling clothes. We're used to activity and multi tasking which lets face it we like - its who we are, what we do, and we have to remind ourselves to do very, very little. Its so hard to curtail our activities when life is here to be lived. You've been on my mind as I go about today and hope very much you are a bit better today Pats. Reading about Sue's busy life makes my brain nip. What a phenomenon you are Sue, but maybe your activities are adding to your painful arms and neck? Who knows. Its all such a distressing guessing game really. Thinking of you both. Just heard that my daughter in London and grandchildren went on a Maggie's cancer care night walk last night in London - must have been the same one as Kate was on we're thinking. Janimaths

[janimaths in reply to janimaths]

this should have appeared after Pats blog but seemed to skip - its for Pats and Sue both.

[Celtic PMRGCAuk volunteer]

Pats - I'm so sorry to hear how much pain you are in. It does sound as though the 7mg dose is too low for now and you need to increase back up to control the inflammation, perhaps to 10mg for a short while before trying again. It can be easier to get back down to where you were the next time around. Flares are quite common in the first 18 months or so and if you increase the dose now it may prevent you having to go even higher if you allow the inflammation to really take hold again.

I remember when long car journeys were a no no for me. On one occasion we went on a coach trip to Canterbury - I had felt fine beforehand and on the coach but within less than 10 minutes of stepping off the coach I was in agony and unable to walk. I sat inside the Cathedral whilst hubby walked around and then we found a hotel where we had lunch and where we stayed until it was time to hobble back to the coach.

If you do decide to increase the dose, perhaps next time you reduce you could try a half mg reduction on just a couple of days at first to test the water so to speak. Good luck.

[Annodomini]

Sue8, bending over your sewing for hours on end, even at the best of times, is sure to create tension in your shoulders - much more so with PMR. I may be preaching to the converted, but you do need to take lots of breaks. Maybe do some shoulder rolls, if it's not too painful, to relax the muscles. Sorry to hear your sleep pattern is so distorted. Do you manage forty winks at all during the day?

[Sue8 in reply to Annodomini]

sleep during the day? you have got to be joking lol I home educate my almost 7yr old and my 13yr old along with the dogs I don't know where time goes.

I don't bend over a machine even though I do make my daughters PJ's from time to time on the sewing machine and overlocker. Not been able to lately. I hand embroider tote bags and at present Santa sacks with names so I do roll my shoulders often and my neck.

I have just really struggled to hoover through even though Henry (hoover) rolls across the laminate floors with ease. All done now so going to rest up for a while.

[Vickie50]

Great to hear from someone similar age to myself and getting on with life regardless. I work full time as a CPN but had a week off last week a spent my time gardening. This week had a bit of aflare up and back to 20 mg of pred. Not sure if this is because I did to much last week? But I felt fine and really enjoyed myself.

Try a reduction again next week and hope for the best!

Thanks for been so positive you are really a great motivater

Vickie

[Sue8 in reply to Vickie50]

aw thanks Vickie

I have to carry on or my household will come to a standstill lol. My mum often says to sit down when she comes visiting but I just tell her I have a life to live and this illness is not going to stop that. I think it is probably harder to rest as I have the younger kids but if it does get to much like today for instance then I go sit in the lounge in the quiet for a while.

I did the 17.5mg again today and took the naproxen also so tomorrow back to 20mg me thinks.

Really need to take the pup for a small walk but he will have to wait til tomorrow also bless him.

[Hidden]

Hi everyone who answered my message.

This is the second time I've been on 7mg and failed to hold it together. The last time I even got below that to 6.5mg - what a disaster. I went up to 8mg for 4 days and then reduced to 7.5mg and then 7mg.

Until today, I have been on 7 for 2.5 weeks. The first 2 days seemed OK and then bang, the same symptoms returned - not so much the pain of PMR, but elbows, knees, and collar bones from which the pain spread down into my chest. But the overwhelming effect is the most awful tiredness. The worst kind of burnout. I get out of bed and feel pretty good, come down for tea and toast and pred. After about an hour I get up and start to do housework etc. Within about 15mins I begin to get tired and soon the tiredness gets so bad I have to sit down again. This is the pattern. I don't know if it's the PMR, the reduction in pred or a combination of both.

Today I went back up to 7.5mg and have felt ghastly all day except when I am resting. I think that tomorrow I'll go up to 8mg like before.

I could ring my GP I suppose, but I think I'll just talk to you guys until I see my rheumy next month.

A very fed up, Pats. xxx

[Sue8 in reply to Hidden]

hang in there Pats

Keep smiling