[seashell]

HI everyone

I gave in to my pain, I agreed to go on prednisone short term as the non steriod such as voltarin (brand name) and iboprofen was not touching the sides. So this is my 2nd day, I am on 25mg for 4 days and then 12 1/2mg for another 4 days to wean me off.

Am I expecting too much?? I was expecting to feel great. The swelling in my hands has mostly gone, and the constant pain has eased but I am still stiff, cracky and sore when apply any sort pressure or tension to joints, such as bending fingers or wrist, ankles and knees still hurt when i stand for too long. I know I am unfit but this is not the miracle I was expecting. I couldnt sleep last night from pain still last night and today I am sleepy with a headache.

I go and see my ruemy next week anyway but I was hoping that someone could tell me what results I should be expecting? I mean surely we should feel better than this is we are risking all the nasty side effects. I am also on Plaquenil 400 mg day for 1 year and other assorted meds for bp and migraine and anxiety. My 10 year old looks so worried when she sees the handful of tablets going into my mouth.

If anyone read my post the other day, I deleted it, I was in a terrible mood the other day, from total frustration. I apologise anyway, Hugs Shell xo

 

[Raglet]

yes, I do think you are expecting a bit much. Prednisone is very helpful, and it sounds like you have had a pretty good improvement all things considered. I am not surprised that you want the whole lot gone, now (in your shoes I would too !) but then it doesn't really work like that. I think you can definitely hope for some more improvement while you are on the 25mg dose. My rheumie once told me years ago it can take 4 days to fully kick in.

In terms of children - I think that they pick up on our mood around things a lot, so the more upbeat you can be about taking your meds and giving out messages like 'it's great that I can take these meds, they really help' etc etc the better. I know that this can be really hard to do, especially when they aren't working ! My daughter has had me taking truckloads of pills her entire life so I just tried really hard to help her see them as something good and helpful rather than something to worry about. The more I worried the more she worried, and vice versa. I also had an absolute rule about never getting her to be a little helper in terms of getting me my pills or any other assistance with my disability as I think that kids need clear boundaries around who is the parent and who is the child. She could and did take her turn doing the dishes and all the normal chores kids do. Just on my soapbox here - I know I was not totally successful in terms of preventing my daughter from worrying, but I sure tried my best and really that is all any of us can do.

hth

raglet

 

[lin]

shell raglet as given good advice, pred is a good drug,

you take care now Lin
,who use to live in your neck of woods my mum use to work at the royle childerns hospital. we lived in Marybrnong..... nearest becch was st kilder.


Lin xxx:hehe:

 

[seashell]

Thanks Raglet for your advice and Lin for your input.

I thought maybe i was expecting too much but at the same time I had no idea what to expect. All you hear is that its effective and the negative side effects, but nothing about how long etc. and I figured if Im only on it for 8 days then it may be a rapid relief like taking paracetamol for headache for example. So i will give it the benefit of the doubt and see what happens, I see my rheumy next week so I will have a good chat to him.

Thanks also for the understanding about my daughter. I am of total aggreeance with you about children not helping with meds etc, for a start they should be out of reach with children. I guess its been a bad few weeks for me and so my condition has been more in her face again and its school holidays here so she is around a lot more. Radha overheard me talking about my reservations about going onto steriods (10yo big ears!) and mistook it for the ones that are illegally used for performance enhancing. I have now corrected this, but i still think it worries her a little that I take so many tablets as it reminds her that I am not healthy.

I have always been matter of fact and down to earth about life issues including my illness, and she is a wise kid who is very open minded. And by all means I dont get her to be my carer, she helps out no more than any other 10yo would or wouldnt! We have the usual arguements over cleaning her room! But she has seen me at my low points, visited me in hospital a few times prior to diagnosis when they thought I was having strokes or MS etc. And it gets frustrating for both my kids when I cant be as active as I would like to be (I also have a 6yo boy) Im sure you know what Im talking about.

Thanks again Raglet, I hope to get a better sleep tonight and hopefully this headache may go away. Thing is I usually take iboprofen for headaches as more effective but the gp told me to not take anyother antiinflamatories while of prednisone, any ideas why?

Kind Regards

Shell

 

[Raglet]

hi there, me again

My sister always used to say 'little pigs have big ears' and goodness, kids seem to hear EVERYTHING, even when you think they couldn't possibly have heard. Mine certainly did, and still does (she is currently 22). Sounds like Radha has a very loving, caring mother, and that is the most important thing in the world. My daughter has really been through the mill through out the course of my lupus, so I do know that it can be very difficult and all the positive thinking in the world won't make it go away (though I am a firm believer in positive thinking).

When I was on anti inflammatories I took them all the time along with my pred (which I am on permanently), as do lots of others on this board. But if your doctor told you not to, then you should check with her/him before taking them. I eventually had to stop taking anti inflams when I went on coumadin, but I took anti inflams while on pred for years.

hope this helps, and best wishes to you AND your daughter

raglet

 

[seashell]

Thanks again for the advice, maybe the dr wanted to test the difference between the 2 treatments. Also thank you for your kind words, sounds like your not too bad a mum yourself Im sure your daughter is very well adjusted from the love that you gave her and also these challenges in life makes you appreciate the good times.
Cheers

 

[Maia]

I noticed the most improvement on the morning of the 3rd day (always take my prednisone in the am early to try to avoid the up all night side effect!).

Prednisone has never been a miracle drug for me either in that all my symptoms are gone and I feel wonderful and full of energy cleaning all my cupboards and the entire house and both cars, etc etc etc! Maybe that's what happens when you're on higher doses than the 20mg dose I usually max out on.

I usually still have a lower level of joint pain but like you the improvement with prednisone is obvious whereas the improvement with NSAID medication is practically not noticeable.

Hope tomorrow you wake up and feel even more improvement! Good night

 

[flutterbye]

Hi there, I do hope that you will see more improvement on the pred, I think it can be usefull to 'test' out exactly what is helping and certainly my docs have eliminated one drug short term to see how helpfull another is, it can feel frustrating but futher down the line when you and your docs know what helps it can mean getting on top of things a whole lot quicker, for me that means a quick burst of IV steroids, it has taken us all a long time to work out what works when, and I still get it wrong sometimes!

As to children, I can totally empathise, and sometimes have to remind myself that as a parent it is in the job description to feel guilt and worry and I totally agree that we have to remind ourselves that we are doing the best we can, probably our best is actually pretty darn good, I know I for one can be extremely hard on myself as a mum, when the truth is I am a great mum, as are you I imagine. My teenagers actually don't give a stuff about my lupus, they know sometimes I consider opening a tin of soup is cooking and I might pull their school uniforms out of the 'needs washing basket' shake them and hang them up last thing sunday night. I know when my kids were younger I actually 'overcompensated' trying to make up for what I felt were my 'failings', now I guess I feel like whatever I feel I lack in one area I more than make up for in others, I think that your children are very lucky to have you for a mum, and can say that with kids a little older than yours, from feeling they way you do I am really proud of how smart and funny and insightfull they are, they don't do any extra stuff due to my lupus, they still argue and their rooms are a tip mostly but they are pretty special and I would bet yours are too.

hugs and very best wishes xx

 

[seashell]

Hi there

Thank you Maia and Flutterbye for sharing your insights and experiences, This site is full of great people
Im keeping this short today as I have been suffering from a migraine pretty much from the 2nd day of the prednisolone. This morning I cut down to half a tablet so (12 & half mg) on that for another 3 days. The prednisolone has stopped the infammation, and also taking away the constant aching in my hands, wrists, knees and ankles. But I am still cracking and sore if I do stuff. I just feel so unwell, Im not sleeping well, tossing a lot and crazy anxious dreams. Im so tired and the slightest bright light, loud noise or movement feels like knifes in my head. :sad: I know headache can be a side effect but Im not sure whether its just part of my flare as it quite often is.
Thanks again
Shell xo