Posted , 9 users are following.
So I'm newly diagnosed with Sarcoidosis haven't worked since June I'm taking prednisone not working for me I feel like I'm drowning breathless and pain in my ankles and joints how is there any kind of relief from this horrible disease???
0 likes, 38 replies
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AmandaPC Katlis
Posted
Hi Katlis,
This is my second time round with sarcoidosis amd has been worse then ever on 3 different organs and my legs and this time round was put on steroids. The aches and pains are systems of sarcoidosis, infact you tend to get the pains before being diagnosed and doctors often say the pain is fibromyaligia which is what I've been told before.
I've been on the steroids since October last year and trust me there are so many side effects it will make you feel down but they have worked so far so I'm staying positive because once they do what they are suppose to then I'm happy for that.
I have put some tips in my posts to others on what has helped me, maybe take a read.
Stay strong ?? it might take a while but it only gets better from here.
Katlis AmandaPC
Posted
Thank you I really hope so I'm tired of feeling sick and tired and feeling like I'm suffocating esp in this heat I can't even go outside at this point
AmandaPC Katlis
Posted
The other thing that is possibly causing the pain is your body thinking that it has a lack of vitamin d because the sarcoidosis is feeding off of it. 3 years ago I could barely walk had to get a walking stick I was 32 and felt like I was 92 when I went to doc I was told I had no vitamin d in my body so was prescribed a very high dosage of this, after taking it for 3 months and told when I go on holiday get as mich sun as possible then that's what I did, however the pain stayed then I started failing in different areas of my body to that's when I got very sick, my specialist now who I have had a year now told me that sarcoid feeds off of vit d and calcium and that it was possibly made spread more by taking the high dosage. My blood shown none however there was a sustainable amount in there is was just been eaten by the sarcoid. Since then I stay covered up as much as possible and don't take any vit d or calcium.
tyagi AmandaPC
Posted
Doubly difficult if, like me, you've been on Prednisolone which causes osteoporosis. So then you need to maintain calcium levels which needs Vitamin D to be absorbed. Getting the balance right is a nightmare !
AmandaPC tyagi
Posted
Oh no tragic,
They are what I am on I really hope I don't get that problem, how long have you been on them and what dose?
AmandaPC
Posted
Wasn't suppose to say tragic, predictive text, was suppose to say your name sorry ?
AmandaPC
Posted
Wasn't suppose to say tragic was supposed to be your name, predictive text, sorry ?
Katlis AmandaPC
Posted
What do you take for your pain I'm using Toradol 10mg 3 times a day but it has lots of side effects as well o cant napoxen or advil that makes me swell lol I can't seem to catch a break
AmandaPC Katlis
Posted
Hey Katlis,
To be honest with you I just take paracetamol and have only ever really taken that, I've been sick for 6 years now and I've had so many different problems, most of the time I try not to take pain killers because the steroids are doing enough along with my bone tablets and stomach tablets and any other tablets I take for reoccurring infections, there is enough going into my body.
I don't have a problem with the weather I live in Ireland lol ??
Katlis AmandaPC
Posted
Wow u live in a beautiful place I'm in St. Catharines ontario it's so very hot this summer we have heat worrings to keep cool are you able to work? I've been off work for 3 months now but I was just diagnosed July 12 so this is all new to me I've never even heard of this before idk how I got it
AmandaPC Katlis
Posted
Hey,
Yea Ireland is a beautiful place I do love it here but wow yourself I would to be where you are haha. The sun for you would not be good because of the vit d the sarcoid feeds off of it. I was first diagnosed in 2010 with it on my lungs, lasted about 8 months and I was out of work. This time was worse I have been very sick for some time and have not worked since 2014 apart from a 3 month stint that I did last year but really wasn't able for it had to give it up.
Katlis AmandaPC
Posted
Hey
Wow that's to bad idk if I will be able to get back to work I'm in nursing and the wear and tear it does on the body can be brutal with out the Sarcoidosis can't think how it would work with it
tyagi Katlis
Posted
We don't get Toradol in the UK, but we do have naproxen and ibuprofen.They are all non-steroidal anti-inflammatories, so can cause stomach irritation. I agree with Amanda- Paracetamol (acetaminophen in the US) seems to be strong enough for my pain control, but doesn't have the same side-effects. But not good for constant long-term use, as it CAN affect the liver.
tyagi AmandaPC
Posted
Katlis tyagi
Posted
AmandaPC tyagi
Posted
Hi tyagi,
Wow that's a very high dose I started on 40mg of prednisolone and have been on them since October last year. I was advised to stay away from nurofen and the likes of them because taking them everyday four times a day can cause sevre damage to liver etc.
I have had asthma since 2010 but due to the steroids I keep getting infections in my lungs and chest and in February gone I got a bowel infection which was very serious and in hospital for a week. I know it's scary all the side effects but they are working and my spleen has shrunk to normal size however still not sure about the rest just yet still awaiting results.
AmandaPC Katlis
Posted
Hi,
Yes I hear you, it was extremely hard working through the 3 months I just did it because I was tired of waiting for answers and I was getting bored, but it was the wrong thing to do, the doc said at that point my spleen was so enlarged that if I didn't rest and start the steroids I wouldn't be here in 5 years so I gave up the job.
Katlis AmandaPC
Posted
Hey
Wow that's not good and ur so young this is just an awful disease wish you well
AmandaPC Katlis
Posted
Thank-you and I wish you well too. It's great to talk to people with very similar issues.
Take care.
AEK Katlis
Posted
Hi Katlis,
I was diagnosed In August this year, it's done a lot of damage to my lungs and I've had a lobectomy on my left lung.The ache in the body is really awful,I hope things improve for you and for me!!!
Abbie