The Diary Of Onebrokelady Aged 60 And A Half

milann

Hoping the new medication helps you. I’m so pleased you’re getting answers 👍

Onebrokelady

Suffolksue said:

q Delurking ( again ) when I had polymyalgia starting in 2014 ,the rheumatologist I saw said it wasn’t a race to get off steroids and the slower I went the better it would be .
i finally finished in 2019 - if I tried too quickly I had a relapse and at one point he was bringing them down by 1 mg/ every two months .
he also said that if I needed to remain on a small dose for life that was fine .

ive had no problems since ,so maybe a long slow reduction might be better .

hope you get a good improvement quickly ,it really is a very debilitating condition 

Hi thanks for the info😀 The doctors I spoke to who first diagnosed and treated me made it sound like the faster I could get off them the better so I think my treatment was rushed. I am going to be very pro active in making sure that doesn’t happen again. I’m on day 6 today and feeling back to normal 😀

Onebrokelady

dawnybabes said:

My original only symptom of being coeliac was the lack of iron, it’s only when I started having the more normal symptoms that it suddenly made sense. 

You can buy gentle iron (my DH used to have this as he couldn’t tolerate the ‘normal’ iron.  

I’m actually doing ok on the iron at the moment so will see how it goes 

Onebrokelady

Cherryfudge said:

Goodness, everything is suddenly happening! Please don't go for an infusion if it makes you sick - I'd not realised it could do that. I hope the prescriptions you've collected today start to make you feel better soon.

The other treatment I'd seen mentioned was one of the new biologic drugs which are now being used in other conditions but I've no idea how much they've been trialled for yours. I'm only mentioning them because it's good that new lines of treatment are being explored.

Emergency supplies for the bad weather, then bed with a cat and a book sound ideal. You will be able to listen to the wind howling and lie there turning pages to your heart's content (until the cat wants to go out).

I don’t think it’s a common thing for the infusions to make you sick 🙂There’s lots of treatments coming out now but they won’t put you on them if steroids work because steroids are dirt cheap and do the job. 

Onebrokelady

debtfreewannabe321 said:

After the hospital I did a bit of shopping for emergency supplies for over the weekend so I don’t have to go out if the weather is horrible. So me and the cat are set up with treats 😀 and now I’m off to bed to read my book 

This sounds bliss to me 🤩 
So glad they got to the bottom of your ailments. I used to have iron deficiency but also used to be sick if I took the prescribed iron - I used to buy spatone which was really good. It's liquid and works better and quicker than tablet but the downside is you have to pay for it.

Have a lovely day 😁

It was lovely 😀 I don’t get on with spa tone either 🤢

Onebrokelady

Makingabobor2 said:

iron used to make me constipated when I needed it. Horrible stuff.  Try liver and spinach, much nicer

I don’t normally get constipated from taking iron luckily but bit does make me feel sick 🤢 I can’t have liver because I’m vegetarian but I do eat spinach and kale 

Onebrokelady

Sunshine_girl2 said:

Just catching up on your diary. Really pleased to hear you may finally have a correct diagnosis , and that the pain may lessen. 

Thanks I’m so relieved I can get back to normal now 

Onebrokelady

milann said:

Hoping the new medication helps you. I’m so pleased you’re getting answers 👍

Thanks Milann it certainly has improved things so far 

Onebrokelady

Today’s update is good and bad I will do the good first. 

The steroids are working and I am virtually pain free again so I’m going to message the Rheumatologist on Monday to let him know. It’s day six today and I feel so much better. I went for coffee with my friend and was able to walk up the stairs to the coffee shop instead of using the lift and I could carry my tray 🍾🥳🍾 even the pain in my wrist isn’t as bad,it’s still there if I do to much of a repetitive movement but not like it was.

 I can also lift my arms up over my head again after not being able to move them above shoulder height for the last four months. I’ve spoken to my boss and I should be going back to work after this sick cert runs out. I have a weeks AL the following week  so my first day back at work will be Christmas Eve, what a nice day to go back to work. I will be going back on a phased return so will do shorter hours for a couple of weeks to get back into the swing of things. I am going to keep an eye on my left knee which was what actually caused me to go off sick in the first place and if it causes problems I have that appointment on the 19th of December to go and see about it. I think the knee issue is a separate problem to the Polymyalgia but I won’t know until I start walking again.i walked for half an hour on the flat today and it was ok. 

The bad part of the day was that I got a call yesterday to go to the hospital to have a CT scan of my chest at 9am this morning so I booked a taxi because it’s not my hospital where I work but one further out and my taxi let me down so I missed the appointment. I was so angry 😡😡I booked that taxi in advance and I told them it was for a hospital appointment. I booked it to allow plenty of travel time so it was due to are I at 8.15 but it didn’t turn up until 9am 😡I phoned them several times and they said it was on its way. Then the driver phone me from outside to ask if I still needed the taxi so I went mad at him and said no I’ve missed a very important appointment now and there’s no way you can get me there in five minutes😡 I had to phone the hospital to ask them to cancel it and re arrange it. It annoying on two counts because not only did I miss my appointment but someone else could have had that slot instead of me.

I’m going out tomorrow for a Christmas lunch with some of my work colleagues so that will be nice. I’m off to bed now though because I’m knackered after getting up early this morning for the appointment that didn’t happen 😟

Cherryfudge

I'm so pleased the steroids are helping and you no longer have to battle with feeling so grim. That's terrible about the taxi though.