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Discussion Starter · #1 ·
Hi everyone,
I not been posting much over the last few weeks as I just haven't been able to muster the positivity to try to help with good advice.
I have been really poorly again with some costio and was sent for some x rays by my gp which were clear of pleural effusion. I feel like I have been hit by a bus and last week my gp put on a 5 day cause of pred at 30 mg. It is my last day tomorrow and I don't know what to do, something set me off yesterday in a very bad way, and I actually felt like I had done before I started my metho, I was crying in pain and not far from that point today and sure that I will be later as I have the kids off school too.
I have asked my gp to call me today but what should I be saying.

I am already on metho 20mg, plaq 400mg, as I said the pred 30 mg for the past 4 days which stops tomorrow and then all the pain meds. It was also suggested that I start on Azathioprone if things don't improve, but I think my gp is trying to hold off on this as long as he can.

So what now, after about a month now of just getting progressively worse and then deteriating even on the steroids, what do I do. I was actually hopeing that the metho, although it had not reseolved things that it was preventing me from getting like this again but guess not, although it has been more infrequent, this time things have just gone on and on.

I have had quite a bit of stress going on too which has unfortunately been unavoidable.

I woul.

I would really appreciate any advice you wise and wonderful people can give me and I am very sorry for winging.

Many Thanks

Take Care All

Cassie
 

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Oh Cassie, sorry to hear you are having such a rough time, thought you weren't around much at the moment. I don't know much about Metho but wonder if that is the limit of dose you can have? Four days on pred is quite short, they are obviously trying a short sharp shock, it may be that it has to be increased for a while to get you back under control and for a bit longer, the stress you say you have been experiencing will certainly worsen your symptoms too so sounds like your body is all over the place. Just tell your GP as it is, as you have to us.. you need some sort of plan to help you get through, especially as medical help will be harder to access over Easter.
I send you gentle hugs and a big dose of energy to ask/explain to your GP how you are and that you need to get out of this pain... take care Cassie,
Claire X
 

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Discussion Starter · #3 ·
Hi Claire,

Thanks so much for your kind thoughts.:)
I 've just spoken to my gp and he's told me to go up after surgery this evening for him to check me over. It was my gp who prescribed the pred and I think is more cautious at that dose, my rheumy usually gives one month from 40mg- 0mg dropping 10mg per week.
I am not sure but he will probably continue it a bit longer,he did say something about a pain clinic too, not sure how I'm going to manage that.

Oh well, I'll let you know how it goes. I 'll probably be moaning more later.

Cassie :)
 

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Good, glad you are going to see him face to face, sometimes that is the only way to have the time to explain things. Hope he comes up with some good suggestions to help you... let me know how you get on. Loadsa good thoughts coming your way..;)
Claire X
 

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Discussion Starter · #5 ·
Well I saw my gp amd he was really good, he did give me plemty of time and we talked through things. He is harbouring a slight concern that maybe the pain relief may not be doing anything. I have not been taking the extra top up doses that I can as I am trying to get ot down not to go up.
It was my hope that the metho would stablise me a bit more so that I could look to come off the pain meds or atleast reduce them. I currently take tramadol 100mg 3x per day and paracetamol 1 mg 3x per day. I was topping up with more and morphine before but have not been doing this for the last 3 mths.
He wants to me to have my bloods done first thing in the morn and then if the inflam markers are still up the we will continue with the steroids.

He also said that for future we have 3 options, he is happy to refer to the Bath Royal National Hospital for rheumatic diseases and said also it might be worth going to a pain clinic to have the meds reassessed and anything else they do for me and then to obviously try to establish whether there is some vascular or neuro involvement going on or whether some of the symptoms which are troublesome are connected to the tramadol. He believes and is right that the only way to do this is to remove the tramadol.

I did see a neuro who did no further investigations on me and just said all my symptoms that appeared to be of neurological origins were actually the tramadol. I do not except this as they do get worse along with my other symptoms, but would like to prove the neuro wrong!!

Something else actually occurred to me when reading another thread just now, could this whole episode be down to the sun, those of you have dealt with this longer term would probably think, you stupid numpty the sun can ofcourse make you really ill!! But this is a part o the disease that I have struggled to come to terms with even though I do have the malar rash and it is photosensitive. :rolleyes: Its more the connection with feeling much more unwell when the sun is out if you understand what I mean.

I think for me the move to Bath would be a really ood one for my longer term health, am just worried for obvious reasons!

Take Care All

Cassie :)
 

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Hi Cassie,:)

I have been thinking about you and wondering how you were.

It sounds like your doctor is wonderful. He listens to you and helps you.:)

Do you take oral methotrexate? I have started on that too. I talked to my rhumey and from the sounds of it 20 mg oral is all the higher he wants to go. I know there are members who use the injections of methotrexate. They say it has helped them. My rhumey said that methotrexate works for some and some it doesn't.

I hope you get the relief you need. Being in pain isn't nice at all.:( Take care and it is great to see you.:)

Love,
Lyn
 

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Discussion Starter · #7 ·
Hi Lyn,
How are you, I have been checking in but not seen any post put up by you when I have. I hope you are doing o.k.

Thanks very much for your kind response.

I think the metho has helped with certain things and not so much others, the joints very slightly but not enough really. What was saying to my gp was that what would I would like to aim for is to be flaring less often, I am still ill more than ok, I've been in a constant cycle for over a year now of feeling bad for a week then a few days not so bad, then two weeks bad, then a few days not so bad. I have been lucky though as since starting the metho, I have not ended up being really bad like I was for anymore than a week or so until now.

I am just hoping that my inflam markers today don't let me down today as I will end up looking like a complete numpty and my gp will then be certain that the pain killers are reducing my threshold for the pain and that they indeed are responsible for some of the problems in terms of side effects.

Oh well we shall see.

Take Care everyone

Cassie :)
 

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Hi Cassie,

Sorry to hear things are getting no better for you and hope that in the next few weeks things dramatically improve for you.

Try and get as much rest as possible :rolleyes:, which I know will be hard with the kids on Easter Holidays!

When coming off Tramadol please don't go Cold Turkey, its best to reduce gradually.


Take care,
 

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Discussion Starter · #9 ·
Hi Lesley,
its really nice to hear from you. I hope you are not doing too bad at the moment.

I can't consider come off the tramamdol at the moment, not when I'm like this anyway. But when I do there's absolutely no chance that I am doing it cold Turkey so don't worry about that!!

Take Care

Cassie :)
 

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Cassie,


I am sorry to hear that you are having so many problems. It sounds as if it is time to sit down with your Rheumy and discuss what is going on with your health and together work out a game plan. Sometimes it takes a trial and error with medications or other therapies. All of it is worth a try because you do not know what is going to work. Keep your head up, it will get better.


Nancy
 

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Discussion Starter · #11 ·
Hi Nancy,
Thanks for your reply.

I last saw my rheumy in Jan, he has now left the hospital and the departmeny itsekf is in a real mess, this is why my gp has mentioned the referral to bath as he probably thinks 've got more chance of being seen sooner there and will also be seen by a specialist lupus team.

So In terms of that I think I am a bit stuck. I do have the option of starting the azathioprine that was advised by my rheumy in Jan I guess this is another consideration that my go will make if the inflam markers are still up.

Take Care all.

Cassie :)
 

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Hi Cassie, glad you had the time to sit and talk things through with your GP, I also think you probably need to get a Rheumy's head round the problems so the referral sounds like a positive step in the right direction, sounds like you have a good GP there though. The sun can certainly make people feel very ill, so avoid it whilst you are feeling soooo bad. I hope that the Drs can get you referred and treatment assessed sooner rather than later, might be worth letting them know you will take a cancellation if one comes up.
Hope you get some rest and feel a bit brighter soon. X
Claire X
 

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Cassie

Just wanted to say I am sorry that you are having such a hard time, it sounds as though you have a good gp though. If you think it is the sun causing your neuro symptoms then keep a diary this can also help you to see if there is a pattern. I hope that things improve for you soon.

Take care

Deb
 

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Discussion Starter · #14 ·
Hi Deb,
many thanks for your response. You are absolutely right that I should try and record triggers for flares to see if there s a common cause.

Thanks for the good advice I will try to do more of this.

Take Care

Cassie :)
 

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Cassie,
You may have come to a point were you may have to try the new drug and see if that is the answer to getting things back in order again. It is important to feel well and do be doing well so we can have as much of a normal life as possible. I think many doctors forget this part of the disease. We don't wish to feel like crap we just do, and anything we can do to help the pain and the fatigue and the disease from going any further is worth a try.
 

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Discussion Starter · #16 ·
Hi Tammy,
Thanks for your reply. I think you are absolutely right, I think alot of us would just tolerate feeling terrible all the time beacuse that is what they expect from a diagnosis of a a lupus type disease. But it is true that even with that don't you have the right to have the best quality if life that it is possible to obtain.

Thanks very much for your really great insite. We should all be demanding when it comes to a better quality of life.

Many Thanks

Cassie :)
 
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