My journey to a debt free life

Onebrokelady

Suffolksue said:

that that seems to be a huge drop in one go .they took me down only 10mg to start then 5mg a month ,I ended up with a rheumatologist who went even more slowly .
good luck 

I did think that myself but my GP said that the dose I was on was for treating the GCA which it turned out I didn't have. I was only on that dose for the week so she thought putting it down to 15 mgs would be ok as it wouldn't have knocked off my adrenal glands too badly. It seems to be working ok so I will see how it goes,I've got a review in 4 weeks with bloods to check my inflammation levels so will be able to see how well it's going then. I'm quite keen not to be on a high dose of steroids if I can get away with it. My mum was put on a high dose and it took years for her to be able to taper it down with the result that she is still on them 30years later and they have damaged her body now 😟

Onebrokelady

maggiem said:

So very pleased to hear your pain issues have improved and that you may have some answers too. 

Thanks it's good to finally have some kind of treatment that actually works 😊

Onebrokelady

Willowtree222 said:

I’m so pleased you’ve got a plan and are mostly pain free. That should hopefully make everything else so much easier for you now, at least some quality of life compared to the last few months
x

Thanks ,everything is feeling so easy now. I said to B earlier " look at me walking up and down the stairs like a normal person " she just rolled her eyes 😂

Onebrokelady

milann said:

It’s fantastic that you’re feeling so much better. I was on the bisosphonate tablets  you take weekly for several years, it was my Saturday morning ritual. I’d take them and sit up in bed for half an hour watch tv then it suddenly started giving me tummy agro so I had to move over to the infusions. They’re not bad to have if you need to go down that route. Have they scheduled you for dexa scans to keep an eye on your bone density.
I bet you’ll enjoy having a good session sorting out now you’ve got some energy again 😀

I'm taking mine on Sundays as that is possibly the only day I can fit in the staying upright for half an hour, you can't eat either so it would be a problem on a  day as I don't have half an hour spare before I can have my breakfast. It's only once a week so no hassle.
 If I work on a Sunday it's normally a late so that should be ok. The GP has told me to keep an eye on any stomach problems because I have reflux but I take Omeprazole for that so it should help. She said if I get problems to let her know and she will change me over to infusions instead. I didn't realise that he of the infusions is only once a year which sounds doable to me. They haven't mentioned DEXA scans but I will ask at my next appointment ,I know my mum has one once a year because of the steroids .

Onebrokelady

Makingabobor2 said:

Onebrokelady said:

Makingabobor2 said:

Everyone will make their own decisions on medication, but please be very careful of Bisophonates, they have so many side effects that may take a while to show themselves. I was prescribed them and politely told the GP what she could do with her prescription. I admit mine was just for Osteoporosis, so I chose to manage mine naturally and with supplements and exercise. I can see that your need is different, but please take care with the OBL. Hope you are feeling good today. x

Oh no, you have me worried now, off to check out the side effects😟

I'm sure a lot of people have had them and are fine, but as someone who won't take drugs unless absolutely need them to save my life, I decided against them. My attitude is that it is a Dr's job to hand out drugs, but I would rather always look for natural/holistic treatments. Dr's never even seem to know half the side effects that can happen on the drugs they hand out. Its all about deciding if the benefits of them, outweigh the risks. In my case I didn't feel they did and I know several other people who have said the same, but I equally know people who take them.  My risk of a fracture in next 10 years was something like 19%, so that means I had an 81% chance of not getting one....so in my opinion, no need for meds as long as I changed my diet and exercised more.  I was the same when the Dr prescribed drugs for reflux. I read up on side effects and stopped taking them and take a probiotic instead which seems to have done the trick.    
Just be aware, that's all and then you can decide. x

My GP did explain quite clearly the side effects and I've now also read some info myself plus taking my mums experience with them into account I've decided to go ahead with them. My life has been severely affected over the last 6 months to the point of thinking about ending it all a few weeks ago. If this treatment regime gives me back my life then I'm willing to take the chance. The decision is reversible so I can always change my mind in the future. It seems to worst side effects happen after you have been on them in excess of three yea

Onebrokelady

Sun_Addict said:

Oh to feel invincible and full of energy- pass the steroids 🤣🤣

😂😂😂I didn't see these comments 

Makingabobor2

Onebrokelady said:

Makingabobor2 said:

Onebrokelady said:

Makingabobor2 said:

Everyone will make their own decisions on medication, but please be very careful of Bisophonates, they have so many side effects that may take a while to show themselves. I was prescribed them and politely told the GP what she could do with her prescription. I admit mine was just for Osteoporosis, so I chose to manage mine naturally and with supplements and exercise. I can see that your need is different, but please take care with the OBL. Hope you are feeling good today. x

Oh no, you have me worried now, off to check out the side effects😟

I'm sure a lot of people have had them and are fine, but as someone who won't take drugs unless absolutely need them to save my life, I decided against them. My attitude is that it is a Dr's job to hand out drugs, but I would rather always look for natural/holistic treatments. Dr's never even seem to know half the side effects that can happen on the drugs they hand out. Its all about deciding if the benefits of them, outweigh the risks. In my case I didn't feel they did and I know several other people who have said the same, but I equally know people who take them.  My risk of a fracture in next 10 years was something like 19%, so that means I had an 81% chance of not getting one....so in my opinion, no need for meds as long as I changed my diet and exercised more.  I was the same when the Dr prescribed drugs for reflux. I read up on side effects and stopped taking them and take a probiotic instead which seems to have done the trick.    
Just be aware, that's all and then you can decide. x

My GP did explain quite clearly the side effects and I've now also read some info myself plus taking my mums experience with them into account I've decided to go ahead with them. My life has been severely affected over the last 6 months to the point of thinking about ending it all a few weeks ago. If this treatment regime gives me back my life then I'm willing to take the chance. The decision is reversible so I can always change my mind in the future. It seems to worst side effects happen after you have been on them in excess of three yea

Aww OBL, don't ever think that. Yes, the longer you are on them it can get worse, that is true. It sounds as though the steroids are doing a good job though, so that is a definite bonus. Lots of vitamin D will help your bones as well...not that we have much from the sunshine at the moment. Take care. x

Onebrokelady

Wow I now know why they say don't stop taking steroids suddenly. I went a day without due to not being able to get the prescription and when I got up yesterday the pain had come back. I went straight out to the chemist and picked them up,I even took them before I left the shop. I was really worried they wouldn't work because of the much lower dose but after spending yesterday not feeling too good I took my second lot today and I now feel perfectly fine again 🎉🎉

I phoned work yesterday and I'm not actually due back until Wednesday this week so I don't have to go back yet. I'm doing 9-2 for two shifts then 2.30 to 8pm for the third shift then I'm on holiday for a week so it works out really well. It gives me a few days to get used to my meds.get my head round going back to work and get some jobs done.

I took B out for a lovely walk through the fields, it was very cold but I wrapped up warm. B keeps glancing at me now when we are out walking because I'm walking faster than her now, she wobbles along and for the last few weeks I've only been able to wobble along beside her but I've got my stride back now 😀😀 I need to remember she can't go as fast as she used to 😟

Today I have also done some washing and cleaned downstairs. Outside I've actually got round to hanging the key safe up that I bought several years ago. It's normally on the back doorstep but DD had to use it last weekend and it was buried under leaves and possibly spiders so I've hung it on the fence now, she will be impressed when she gets home 😊

Im off to make an apple crumble in a bit because I have apples that need using up and I'm making pitta pizzas for my tea. I had egg on toast for lunch using the last of a box of supermarket eggs that DD bought and I was shocked at how tiny the yolk was, I mean the eggs are much smaller than my own hens eggs were but the yolk was tiny. I've been spoiled with home grown eggs and will have to get used to inferior shop bought ones ( if I can get any that is ) 

Drawingaline

So pleased to read about your diagnosis and treatment. To go from that amount of pain to feeling so much better is amazing.

My sister has begun HRT and all her bad pain has gone. Unfortunately she also has rheumatoid arthritis so still has some issues, but she said it has been almost miraculous. She had a wobble when changing her dose of HRT and said the pain came back and she couldn't  believe that she had lived like that for so long.

Onebrokelady

Drawingaline said:

So pleased to read about your diagnosis and treatment. To go from that amount of pain to feeling so much better is amazing.

My sister has begun HRT and all her bad pain has gone. Unfortunately she also has rheumatoid arthritis so still has some issues, but she said it has been almost miraculous. She had a wobble when changing her dose of HRT and said the pain came back and she couldn't  believe that she had lived like that for so long.

Thank you. I think all women of menopause age should be encouraged and offered HRT, it's such a life changer for so many women.The risks that were exposed were wrong and lots of women have suffered as a result. It protects from osteoporosis and heart disease ( which is the biggest killer of women and not cancer ) I did go onto HRT myself a few years ago but didn't get on with the dose and type of progesterone I was on. I just came off it instead of going back and getting them to change things because it was such a fight to get it I was too worn out to go through it all again
It makes me stop and think that autoimmune illnesses like the one I have developed are more common in women than men and also it mostly effects women over the age of 50 so I think there is a hormone element to all of this but women's health has been badly neglected for decades so nothing is ever done about it. The health service could save so much money by treating women as women with all their differences taken into account