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Discussion Starter #1
Hi again All :)

I've been away from this forum for a while- mainly due to personal reasons and the way I was feeling both physically and mentally.

But just wanted to give you all a quick update on where I am right now in terms of this horrible disease.

To be honest, I have felt it getting a lot worse. I really was not expecting this disease to progress at the rate in which it has.

Right now I am suffering daily from differing aches and pains. One day it'll be my knees. Next day fingers. Next day neck etc etc etc

But I can live with the aches and pains in the joints. It doesn't concern me too much.

BUT it's the pains I get in the chest, ribs and back which are of major concern. I've seen my GP and rhumy who do not think it is of any concern right now. But the worrying thing is that recently I gave a urine test. The GP cleared this as "normal". BUT when I went to see my rhumy she said that the test came back as "incorrect" due to the GP giving me an incorrect sample bottle. So, in short, the GP actually lied to me about the test :mad:

My other big problem is SEVERE fatigue :( I wake up tired. Am tired throughout the day. And go to bed tired. Am tired throughout the night. And then wake up again tired :( I also suffer from severe light headiness and blurred vision. Eyes have been checked by an optician who has said there doesnt seem to be anything wrong at this moment. Fingers crossed.

Anyways, before I go off on one....

My rhumy has put me back again on plaquenil (400mg). She also suggested I begin steroids. But right now, as there hopefully is no sign of organ involvement, I am really against going onto steroids as I've been told that once you are on them it's not a good idea to go back off them!

Also, I've not been reacting too well to any kind of NSAID's so am currently on paracetemol alone.

Hopefully the sympoms subside a little in order for me to get back into my football and some other exercise routine which'll hopefully bring some life back into me :)

In case I don't see you all for a while, I just want to wish you good health and hope you all remain as symptom free as possible :)
 

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Hi Surferboy,

Not sure where you got the idea it wasn't good to go off steroids once you have been on them. It is the ultimate goal. The danger is if someone quits abruptly. You need to taper down slowly to avoid any ill affects.

Take care,
Lazylegs
 

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Hi surferboy,
Sorry to hear your feeling so bad at the moment. :sad:
Some docs make me so angry, I hate being lied to and the fact that a doc thinks it's ok to do it is beyond me. :mad:
As for the steriods, I am tapering down at the moment and it is a long slow process. However your rummy wouldn't put you on them if she didn't feel they were necessary.

Take care and i hope you are feeling better soon

Elle x
 

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Discussion Starter #4
Hey guys, thanks for the replies.

Regarding the steroids - my rhumy suggested them purely due to me explaining how the fatigue is torturing me to oblivion and back and then back again!!

Right now I thankfully have no organ involvement and so we both agreed to see how things progress.

I was pretty much told that once I'm on them... I'm on them! So I weighed up the side effects of the steroids against the way I'm feeling now, and decided to stop acting like such a wimp and try and see out the pain and fatigue!!

My rhumy also suggested a shot of steroids instead. But I read somewhere that this is even worse than taking steroid pills.
 

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Hey SurferBoy, don't hide yourself away. Thanks for the update.
I can tell you I felt terribly ill before I finally got started on treatment that suited me. Things are much better now. It really does improve.
Steroids can be a bit of a pain, but in your case it might be worth trying them, just to see how much they help. Even with no organ involvement you still have a certain amount of inflammatory symptoms which they would help with.
Yes if you are on them for longer than about 3 weeks you cannot stop abruptly and need to taper them,but maybe you could just get away with the odd blast of steroids when it all gets intolerable.

The addition of other drugs, for example Methotrexate usually allows people to cut down on their steroids as it enhances their action.

Take Care,
xxx Lola
 

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sorry your feeling yuk at the moment, i know where your comming with pin and fatigue,
But as for steriods dr might just give you a week or two, that might be all you need to help you .

take care get well soon Lin xx
 

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Hello Surferboy

I am sorry you are feeling so rough. It could be a flare up that will die down or it could be worsening disease since you have not been on any disease modifying treatment for several weeks and weren't on Plaquenil all that long anyway. Lupus should not be left untreated in the hope that it " will go away".

About steroids

I was pretty much told that once I'm on them... I'm on them!

This information is simply false. When a person has been on moderate doses of Prednisone for a month or more they need to start weaning off it gradually to let their adrenal glands resume full scale production functioning. These days nobody is kept on Prednisone longer than necessary. Many people have a short course from time to time to see them over a tough patch either a flare or until a medication has time to take effect. Medically the aim is to get inflammation down as fast as possible and reduce the chances of greater damage being done or new damage starting.

So I weighed up the side effects of the steroids against the way I'm feeling now, and decided to stop acting like such a wimp and try and see out the pain and fatigue!!


The pain is caused by massive inflammatory processes. Pain control has nothing to do with being wimpish. It's precisely because of such an attitude that people suffer unnecessarily, afraid to tell their doctors what pain they are in . Quality of life and pain relief are essential arms of treatment these days. Unrelieved pain itself affects the whole being, the body, the mind and the spirit

Treatment choices are individual of course but they should be made with a good understanding of the facts and the possible future implications.
This isn't a TV reality survival show.

I wonder how many sorts of urine specimen bottles there are. Um.... .

Take care of yourself
Clare
 

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Hey Surferboy,

Sorry to hear you are down and out. I know what you mean about being able to live with aches, but the chest pain is concerning. I am in the same boat with you on that one. I also hate it when the doc says tests are normal, only to actually read a test report and things are not exactly normal. That is a big pet peeve of mine. I had my last CT say "essentially normal", I don't get that one!

Take it easy and don't jump into exercising too quickly. I don't know anything about steroids, so I cannot offer any suggestions there.

I hope you feel better soon.
 

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Hi Suferboy

Wow, Clare's words have just really hit home to me! She is so correct in what she says and I really hope that you heed them as I intend to Suferboy. We all deserve to look after ourselves in every way possible and I know that I for one I lost sight of that for a while.
-Thanks heaps Clare!


"The pain is caused by massive inflammatory processes. Pain control has nothing to do with being wimpish. It's precisely because of such an attitude that people suffer unnecessarily, afraid to tell their doctors what pain they are in . Quality of life and pain relief are essential arms of treatment these days. Unrelieved pain itself affects the whole being, the body, the mind and the spirit

Treatment choices are individual of course but they should be made with a good understanding of the facts and their future implications.
This isn't a TV reality survival show."

Oh, sorry if my attempts to quote have gone a bit haywire there :(
 

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I'd just like to second Freya's comment about Clare's words. I see a new consultant on Thursday and hopefully he can help get me out of the poor health swamp I seem to have been stuck in for far too long

Rachel
 

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Hi Surferboy

My first time on steroids was a steroid injection which totally took away my chest rib and lung pain and my fatigue. It gave me my life back and made me see how ill I had become and had just kind of taken for granted.

The steroid injections are supposed to have less side effects but they dont last as long. I would agree that doctors dont suggest steroids for 'nothing'.

My son has chronic asthma and has to take steroids so he can carry on playing football, he is only 10. For him life wouldnt be worth living without football so despite the risks, for him it is worth it.

Hope you find answers

Deb
 

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Discussion Starter #14
Debatat, may I offer both you and your boy a quick hug :)

Just those few lines from you have pretty much made up my mind that I should either get a steroid jab or take a short dose of pred.

Which would you guys say has the least side effects though?

Debatat, are your rib and lung pains due to organ involvement?
 

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Discussion Starter #15
Clare.T;527682 said:
Hello Surferboy

I am sorry you are feeling so rough. It could be a flare up that will die down or it could be worsening disease since you have not been on any disease modifying treatment for several weeks and weren't on Plaquenil all that long anyway. Lupus should not be left untreated in the hope that it " will go away".


Clare
Clare, would 4 weeks without plaquenil really make things a lot worse? And if the disease has got worse, would it be irreversibly worse?

For the life of me I can't understand why my rhumy suggested I go off the plaq for a while!
 

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Hello Surferboy, I am not on Plaquenil so I can't help much on that score. I do know that most people say they think it doesn't help them then if they stop it they find out how much it was really doing!

I know you are trying hard. Good for you, Stick with it.
x lola
 

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Hi surferboy

I amm not sure if my chest/lung/rib pain was due to disease, one doc said it was pleurisy another said it was due to either costochondritis or arthritis in that area (apparently that happens!!) All I know for sure is that it really hurt and when I had steroids it went away ( by the time I had steroids I had had it for nearly a year and it had got really bad, I couldn't sleep lying down or I wouldn't be able to breathe and I was on every type of painkiller- gabapentin, naproxen, amitriptyline, co-codomal).

Everybody is different in their illness and symptoms and their life. It s never an easy decision trying to decide what meds to take. My son is quite poorly and takes an awful lot of meds for a 10 year old, which allows him to do what is important to him -football and a lot of it!!! Someone else might take a different view.

I guess I just wanted to get you to step outside the box. When you live something day in day out, it is hard to get a perspective and make decisions. Only you know what is right for you.

I do know you have come to the right place. This forum is great with its help, support and advice from some really knowledgeable people.

P.s I guess it must be due to disease activity as on a lung function test they discovered that my lung capacity is reduced and that oxygen doesn't get to my lungs.

Take Care, thinking of you
Let me know how you get on

Deb
 

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HI Surferboy and All,
Sorry you are feeling so rough. I think everyone else has pretty much covered everything else I would have said except.
I had stomach problems due to be being on pred which meant I oculd no longer take it orally. but when I saw the gp initially she said she thought it was the plaqu causing the problem and advised me to stop it. I hve to say that my rhuemy called me at home 2 days later to adjust this madness and said I definately should not have stopped the plaqu. I knew this myself and ah=fter one day off had stat=rted it back up myself anyway.
The reason being that jut stopping the plaqu for one day made my pain and fatigue utterly unbearable, I really didn't think that it was having much effect until then when I realsied how much it was actually helping. Now if I even miss one dose of the plaqu I definately feel that my symptoms are much more severe.

Just thought I put my two penneth in!!

I hope things get better for you but I would emphasise that diseases like this need modifying drugs to possibly prevent things like organ involvement. No one really knows hand on heart where the next flares going to attack them!

Take Care and Good Luck

Cassie :)
 

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Cant understand why going off Plaquenil for a while makes sense as it kicks in slowly and kicks out (slowly?) . Most people stay on it because of his huge benefits and safety long term.

I am on Prednisolone for the first time in my life and I aint no wimp:wink2:

Pred is a serious drug but its benefits can outweigh any potential costs and give you valuable time to come up for air and gain a bit of ground health wise.

Informed , controlled choices are always the best.

Good luck
 

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Discussion Starter #20
The more I think about it and the more I read about it, the more mad I am at my rhumy for taking me off it!!

Once I've recovered from the flu I'm going to give them a bell and get my backside over to them to get a pred jab!
 
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