Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Prednisone


  • Please log in to reply
14 replies to this topic

#1 stillriding

stillriding

    Bronze Member

  • Members
  • PipPip
  • 23 posts
  • Location:Sydney Australia

Posted 20 July 2011 - 02:47 AM

Wow whats with all these drugs? I have scleroderma (hands/feet), muscle and liver involvement. Diagnosed last month during a stint in hospital. I have gone from NEVER taking a panadol to 7 tablets (including supplements)each day. I struggle every morning and mentally talk myself into it every day (yes take the pills, yes youre doing the right thing blah blah blah).

Currently I am on 50mg of prednisone daily (weigh 50kgs) and I hate it. I did some large pred doses in hospital so I am into my 3rd week of prednisone and looking at maintaining a high dose for 2 more months before weaning. This is apparently to give the Methotextrate time to work (weekly subcutaneous injections).

What are everyone elses experiences with prednisone? My mind never shuts off and last night I ended up taking sleeping tablets just so I could relax. Is this really a case of put in the tough yards with the prednisone now so I can quiet this disease down? How does everyone "function" on prednisone? Do you get used to it?

Mind you I am also slowly returning to strength so I also believe the missing key here is exercise. I made it to the mailbox and back before this rain set in yesterday and enjoyed every liberating step.

Is the "fix" worse than the disease or is it just another pandoras box?

Your thoughts appreciated.
Simone

#2 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 20 July 2011 - 04:53 AM

Hi Simone and welcome to our forum!

Gee, it's a hard ask to go from nothing to a dosette box! Unfortunately this is the journey of scleroderma. I was pleased to hear you made it to the letterbox today.

Prendiselone is unfortunately a common drug used to treat scleroderma. Of course we at the ISN are not doctors, just people with a lot of knowledge about different treatments. The supplements have a tendancy to make your daily regime of meds look a bit like a pharmacey I know.

Seems that you have had a good start with your treatment by being in hospital for a while. S You appear to be in good hands. Methotrexate is another common med for scleroderma also.

I know you will get support from our other posters, who will share their experiences. As I don't have scleroderma myself, but live my daughter who was diagnosed 12 years ago, I am very familiar with the trials and tribulations of medications.

So pleased that you joined this support network and wish you well (as best can be each day)

:emoticons-group-hug:

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 20 July 2011 - 06:24 AM

Hi Simone,

Welcome again to these forums!

I can empathise with your feelings over the amount of medication you're taking. I was exactly the same and would seldom, if ever, even take a mild aspirin for a headache. Since having Scleroderma I now have my tablets lined up each morning; my poor liver has never really forgiven me! ;)

I have been taking Prednisolone for the past two years, since I was first diagnosed and in the beginning I was very impressed with it's anti-inflammatory properties. My lungs improved, my swollen, painful fingers and knees miraculously stopped hurting so much and overall I felt better than I had for months!! However, after a while I was not quite so ecstatic about it as I had been initially. It definately does cause weight gain ( I was very sniffy about that and poohed-poohed the idea that I would put on weight :rolleyes: ) and it does have all manner of peculiar side effects. The most serious one for Scleroderma patients is that steroids can precipitate a renal crisis and here's another link fully explaining the steroid warning in Scleroderma.

In my own case I've found that it certainly caused me to be as high as a kite for a while (I've seen it described as "inappropriate happiness"!! ;) ) and as I tend to have a rather in-your-face extrovert personality anyway I realise now it must have been extremely wearing for everyone around me! The steroid euphoria did settle down after a while; also I'm on a comparitively small dose of 7.5 mgs per day; I don't know how I would fare on 50mgs but presumably your consultant will be decreasing the dose that you're taking.

Certainly steroids have their place, but they are a drug to be treated with respect and are certainly not applicable to everyone.

Do keep posting and let us know how you're getting on. :)

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 20 July 2011 - 01:22 PM

Hello Simone

My encounter with steriods was at the low dose of 7.5 mg but I was aware of even that. My mood changed and not for the good so I was glad to get shot of them after a few months. I took them for itching which I had a major problem with in the early part of my disease.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 20 July 2011 - 07:55 PM

Hi Simone,

Prednisone is the drug we love to hate. Prednisone can reduce inflammation and make you feel great but as mentioned, high doses can be dangerous and cause scleroderma renal crisis. I am not a doctor so I can't question your mode of treatment but I have experienced renal failure and I wouldn't wish that on anyone. Please read the information in the link and ask some questions.

From 2004, when I was diagnosed with diffuse scleroderma and renal failure, until now I have been on steroids, and before that, off and on for sinus problems. I was on 2.5 mg of prednisolone and was told by my scleroderma doctor that a scleroderma patient should never be on more than 30 mg. That changed when I had my kidney transplant last year. I started out at 60 mg of prednisone and was lowered until 5 mg where I will be for the rest of my life.

I believe I am having anger issues from it :temper-tantrum: . The doctors tell me this low of a dose wouldn't do it but I have always been an easy-going person and I can see the difference, along with some others who seem to have no problem telling me about it and suggesting I go for counseling or on other meds! Speaking of which, it is time to take mine. I take about 25 a day but for some reason they are easier to swallow than the ones I was on before the transplant.

Let us know how you continue to do. I am sorry you have scleroderma but there is a lot of support here and a wealth of information.

miocean
ISN Artist

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 21 July 2011 - 09:46 AM

Miocean I developed "anger issues" on low dose prednisone too, blow what the doctors say, we know what's going on in our bodies!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#7 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 21 July 2011 - 04:10 PM

Hi Simone,

I knew our friends would have lots to say about your topic. It is one thing most people with scleroderma have experience with.

I hope these posts have helped you with coping and knowing you are not alone.

:emoticons-line-dance:

#8 stillriding

stillriding

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 23 posts
  • Location:Sydney Australia

Posted 21 July 2011 - 05:42 PM

Yeah wow! Lots of experience out there. Thank you for all those thoughts/comments. I definitely agree that we know our bodies and even when those doctors are saying "no no no its not the meds" I think we really do know.

Thanks for the links re renal crisis....this is what I am referring to when I say "Pandora's box". I am pushing to wean off the prednisone as it really is a powerful and scary drug. I have weekly general practitioner checkups and my specialist is fortnight so I will raise these issues.

I have been lurking around this website reading everyone's stories for a while so its nice to finally post and become involved. I also enjoyed a chat or two but the time zone is a little hard. I call myself "stillriding" because up until about 2 months ago I was a mountain bike rider and my future goal is to be "stillriding".

Sending good thoughts to all for a good day. :thank-you:

#9 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 21 July 2011 - 11:33 PM

I like that Simone, Stillriding, a great goal to set yourself.

Sounds like you are in good hands with your general practitioner as well.

Glad you lurked then joined, a big step.

:emoticons-group-hug:

#10 Drew

Drew

    Newbie

  • Members
  • Pip
  • 3 posts
  • Location:Queensland Australia

Posted 22 July 2011 - 05:11 AM

Do you suffer any numbness in your face.? Have had this affliction for about four years now.....

#11 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 22 July 2011 - 11:02 PM

Hi Drew,
Welcome to our Australian forum. Good that you have posted and I trust that you will receive some replies from people who know!

Numbness in the face? Mmm, I wonder if anyone else has this problem. I know I get it and I don't have scleroderma. Problem is when you have a chronic illness we don't know what is the illness or maybe something altogether unrelated.

Will leave it up to the experts.

:emoticons-group-hug:

#12 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 23 July 2011 - 10:25 AM

Hello Drew

Here's a link to your previous post asking about facial numbness and the replies that you received.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#13 uknlv18

uknlv18

    Silver Member

  • Members
  • PipPipPipPip
  • 155 posts

Posted 26 July 2011 - 02:16 AM

Hi Simone
I have just been started on Prednisole and so far the good has out weighed the bad in my case. I have a LOT more energy than I have had in over a year, I no longer feel the need to stay in bed until 12 because I just can not get up. And then go lie down 2 to 3 hours after. My back doesn't hurt as much and all of the little aches and pains have faded away.

On the down side I am more hyper on it than I was before, I get shakey and feel like I am coming out of my skin sometimes. And I have developed weird cramps in very strange places, mostly around my knees! And I am hungry all the time, and with me dieting and trying to lose weight, that is a bit difficult. I have stocked up on fruit and veg though so that I snack on that instead of bad things if I can.

But all and all even though I take a handful of pills now and rattle when I walk, the steriods are helping more than they are hurting at the moment for me. And I am getting things done that would of been impossible before!

I hope it all works out for you in the end and they get things under control. Welcome to the forums and I look forward to hearing how you are getting on!

Jean

#14 stillriding

stillriding

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 23 posts
  • Location:Sydney Australia

Posted 28 July 2011 - 07:19 PM

Hi Jean
I guess you are right. I found it so hard to move in the mornings and sometimes just one flight of stairs was a challenge. I find myself bounding up and down the stairs, forgetting what I was like a mere month ago. Yes, its a powerful drug and a strategy with my specialist to get off it. Thanks for keeping it real.
Simone

#15 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 28 July 2011 - 11:20 PM

Hi Simone,
Glad to hear that you are bouncing up and down stairs. I am sure your specialist will take time in weaning you off it, and remember, quality of life hey!
:emoticons-group-hug: