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Discussion Starter · #1 ·
Hi All,
I hope you all are not suffering too muc and those that are can get some releif soon.
I am sorry for my typing in advance!! And if my vocab is not upto much, am struggling.

I was put on pred, last week of sept at 30 mgs, have dropped 5 mgs every 5 days and am always very determined to egt off as soon as poss.

Got down to 5 mgs and then had to phone doc as I just could not function, he told me to go back upto 20 mgs then drop 5 mgs after 5 days and then stay at 15 mgs untill I go into hospital on 2 nd Nov. :mad: I don't want to be on this stuff!! And I haven't improved atall anyway since going back up, I know though now I am probably caught between a rebound from a drop and the 20 mgs not kicking in yet. Yes I know I should try to rest adn, but am a mum f 5 I am struggling to walk atall breath and fucntion. I have alos had terrible trouble with my thoughts and stammering forgetting words, forgetting what I am saying and tremors, I did tell my doc this and I think thats why he said to stay on the steroids.

I have phone the rhem advice line at my hospital, but what to do!! Can these funny symtoms be attributed to the pred or is this something emse. The docs have said when I go in they will do more neuro investigations.

Oooooh I am so fed up!! I slept for ten hrs last night but feel terrible, bad pain everyhwrer in joints and muscles, headache eye pin, ear pain,very stiff again, I have terrible nausea, can't see quite right, can't think. What else can I do!! Sorry for complaining.:(

Take Care all

Cassie. :)
 

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Hi Cassie :hug:

You're not complaining! I think with what you're going through it's natural to be worried and need some support.

It sounds like the doc was right to put your pred back up and, as you say, you are probably caught a little in a yo-yo. However, the increase should make a positive difference quite quickly. I don't know how long it has been now so, if you're not seeing that difference get back on to the rheumy and don't hesitate to pester.

No-one wants to stay on pred because we are all aware of its side-effects but it is also equally important to remember that it is a very important drug that has saved many lives. Some people don't do well on other drugs, some people may need to keep a maintenance dose of pred for one reason or another (I'm on of those).

It is also too early to be worried about being on pred in the longer term. You may need to be kept on it until you can get on an even keel or until you have another med added to balance your disease activity. If you are on it a little longer tapering down is a bit harder and has to be done very gradually but people do get there (depending on how long you were on those 30mg maybe you came down too fast for your body).

More hugs and I hope you feel a lot better soon :grhug:

Katharine
 

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Cassie,

So sorry thats things are tough at the moment! I do hope the increase again in Pred helps!

Please contact the GP or Rhuemie before your nexts appointment if things dont improve....don't wait!

I'm sure they do, but that fact that you are feeling so rough and have kids to take care off should factor 100% in the prioritising of your daily and longterm care...speed things up really. If this is not happening then please push, harrass all the medics looking after you!

Take care and try to rest!
 

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Hi Cassie, you are not complaining, thats a long list of symptoms to endure. It must be tough with all that going on and the children and house to look after. I hope theincreased dose of pred helps you soon. It does sound as though you need to be on the higher dose for a while, if it doesn't improve though you must contact the doc again or Rheumy. None of us like pred, but sometimes it is necessary. Hopefeully when you go into hospitale they will be able to give you a better regime of meds.

In the meantime, rest as much as possible, I know its hard but when we are bad it is the only way. Try not to worry and take it as easy as 5 children will allow!! :hehe:

Hugs

Deb x
 

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Discussion Starter · #5 ·
Hi again everyone,
thanks so much for your support on my hour of need! It so good just knowing that you guys really do understand. :grhug:

As usual you are right if I don't want my head to cave in from the depression of feeling so inadequate and awful then I need to stay on them.

I spoke to the ctd specialist nurse today and she was brilliant! She said I should could consider getting in sooner and I definately need to stay on the pred untill I go in. She said she'd have me in today of could get theer as she had a bed, but unfortunately its not that simple. My husband has already booked the time off for 2nd Nov and just can't the time off before.
I had a good chat her about some of the practicalities and she said basically what your all saying, I have to try to rest. I have got a blooming fungal infection in the gullet on top of it all now aswell from the pred grrrrr. I thought I did as I've had it before, but am lucky as the treatment is actually nystatin which actually tastes yummy! So nithing else horrid to take.

I think I just need to up the pain meds too if I need to which I am going to do. As I have reduced themself anyhow and can take extra if I want. Yes I ahve to give into it and then do what I can to make life easier instead of trying to plough on regardless and then suffering more and more.

My hub and I have talked aswell about him cutting his hrs to part time and seeing if I could perhaps get my DLA put upto the mid rate so atleast we get something back. Maybe lighting the load a bit for a while will make a difference too. He's not going to be able to do this untill christmas time ish, but did talk to his boss today about it.

Thanks again for the support, I really appreciate it.:flowery:

Take Care All.

Cassie. :)
 

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(((Cassie)))

I have been wondering how you were doing. I am sorry that you aren't feeling good.:hug:

Everyone has given you great advice.:)

I hope the increase pred helps but not don't hesitate to put in a call to your rhumey. Yes, do give in and take pain meds, that will make your pain go down.

Take care and please let us know how you are doing.

Love,
Lyn
 

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Hi Cassie,

I feel so bad for you. I understand how your feeling friend :(. I can't imagine
taking care of 5 children..feeling so bad.

I hate Prednisone too. Sometimes we have to give in and take it, though..Katherine is right. Hopefully, your dr, will find the correct med
mix that can at least level you out..I do hope so Cassie.

Please take care..I will be thinking of you.

Love,
Sandy
 

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;)Hi cassie
I hate pred too, but Im so glad its there! When I was first Dx my Rheumy put me on 60mg for 2 days, then 30mg for a week, dropping 5mg weekly till I came off. Six weeks after coming off I flared REALLY badly :worried:
I saw a Lupus specialist at St Thomas' and told them what had happened. I was told that the pred had been dropped too quickly and thats why I flared again so quickly. They have now written to my GP and local Rheumy advising that during a flare I should titrate down weekly by 5mg till I get to 15mg. Stay on 15 for 2 weeks, then down to 12.5 for two weeks. Down to 10mg for a month, there after drop 1mg every month till I get to 5mg. :rolleyes:

This is soooooo much more gentle a drop and Im hoping it works. It does mean however that I'll be on pred for a long time. However when I raised my concerns with the Cons at St Thomas' she reassured me that its far better to control the lupus with very low doses of pred than to keep flaring. Also if the pred doesnt control the disease at low doses then they will move onto immunosuppressants; so there ARE other options. ;)

So try not to worry about it :worried: I REALLy think I understand how you feel, however my philosophy is ' do what you need to do to stay well and enjoy life - even if that means taking a drug for the short term in the big scheme of things'. :cheer2:

K
 

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Discussion Starter · #9 ·
Hi All,
Thnks for all the great advice.

Hi Lyn, I hope you are doing ok. Thanks so much for your post. You are right, and I will chase them if I feel the need, only one month to go now so hope fully I can start to get somewhere.

Hi Kyphi, thanks so much for posting. Yes I know that I should just do whatever it takes to feel well, its true that before I atsrted dropping I did cope much better, its just hard to deal isn't it. Part of it is admitting it aswell, I have fought through so many things in my life that have kind of developed this ethos that determination can get you through anything, but at the same time although it can help, we all need support and assisstnce soemtimes and actually stubborn determination can actually have a worse affect onn your health.

Hi Sandy, thanks so much for your post. Yes it is tough with 5 kiddies. But the good thing is there is no room for self pitty and they really do keep you going and make you strong, bless them. I will really miss them when I'm in hospital!!!

Take Care All

Cassie.xx
 

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Cassie,

Just a thought!

Have you checked out hospital transport as an option!

Perhaps a call to the CTD Nurse and see if she can help arrange it! You'll be waiting for ever to go in if time off with your husbands job and bed dates don't coincide! I'm sure the hospital can do more to help you get there!!! Do they know and really understand how dependent you are on lifts from your husband and how that effects your appearance at appointments!
 

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Discussion Starter · #11 ·
Hi Lesley,
thanks, yes I would be elligable for the transport. My husband has booked his time off for when I 'm booked to go in for two weeks beginning the 2nd Nov. I really can't just go sooner unless it was a real emergency as I still need to take him thourgh things with the kids, meds for my son who's diabetic, another child with asthma, homework, washing machine, organising for school and looking after two yr old full time. I think it would do me more harm if I were a 2 hr drive away and my husband was phoning up in a state of panic cause he wasn't confidnet to cope alone. This way planning for it it will hopefully mean that he is in control and confident and then I'm not bombarded with constant crisis when I'm in and can't do anything about it!

Atleast its booked and 4 weeks will pass quickly!!

Take Care

Cassie. :)
 
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