Vitamins and sarcoids

Hey Amanda your symptoms sound like mine, I've had sarcoidosis found in my anti bodies just waiting on biopsy, enlarged spleen and liver but my legs are chronically aching all the time feel like they are ripping when I kneel down I also get severe back pain especially around the left rhomboid, I was very heavily into my fitness training every day and now am not able to train at all and I'm on the sick some days then some days am abit better basically just surviving with the use of tramadol, does this joint pain fade with treatment or is it permanently going to be there for my life ? Thanks for any feedback

Adam. A friend of mine was on tramandol. He thought he was addicted to he took himself of them. He says he is better without tramandol.

Hi Adam,

I dont know if you have read my posts. I had sarcoid in 2011 on my lungs, it was active at the same time as this I was told I had fibromyalgia because of the joint pain I had suffered. However when the sarcoid went dorment the joint pain eased. Until Feb 2013 I started getting really bad groin and knee pains to a point where I bought a walking stick, I was tested for fibro again and told no this time round , however come November2013 thats when iI heard that iI had sarcoid on my spleen it has been spreading since that time and my joint pain is still there. I am tired of pain killers so I try to find other solutions for rest and pain. My specialist who is a leading professor in sarcoidosis has advised me that joint pain is a huge sympton and untill the sarcoidosis has cleared it will remain. Maybe look him up prof Donnelly Tallaght Hospital Dublin

Thanks for replys if the pain in joints doesn't go away no point I won't be able to do anything I enjoy life will suck if it comes down to that a nice high bridge will be the answer

Thanks for support

Hello Amanda,

I was very interested in your post about Vitamin D and Calcium and it being 'fuel to the fire' for Sarcoidosis.  I was diagonsed with Sarcodosis of the lung earlier this year.  I was put on 40mg on Prednisolone a day reducing by 5 mg each fortnight which seemed to regulate the Sarcoid during June, July, August and September.  However during October and November I deteriorated to the extent I nearly collapsed a few nights ago and I had only walked a very short distance - breathing a real problem and causing heart paps. As my Consultant's appointment is only two weeks away, I went to my GP who increased steroids to 40 mg again, continue with Aciferol alongside steroids but also prescibed Calcium.  Over the course of the last few days I improved gradually but deteriorated again yesterday and today.  Do you think it could be the addition of the Calcium into the mix?  Your thoughts would be very much appreciated.

 

Prednisone effects the bones and the calcium is a replacement so I was led to believe.

Hi Maria,

I waited a long time to get the answers to my pain. I didn't speak with my gp about this it was a specialist, he seemed to make alot of sense and advised that the body produces enough calcium and vit d however it feeds off the sarcoidosis so when blood tests are taken it practically shows none in your body.

I waa told to the point to stay out of any sunlight and even going for a walk to wear sunblock.

Hi Maria

Bone density loss due to prednisolone is a slow process. It takes many years to have any real effect. Suggust you drop the calcium tabs in the short term and see if this helps overall.

I had two years of 60mg of prednisolone then several years coming of it and now I only have a slight drop in bone density. Make sarcoid your main target and come back later for bone density. Please note I am not a doctor just a survivor of sarcoid.

Regards

Tangles

Hi Adam

I understand your concerns about joint pain. I do not have the answers but I can tell you how I have inimised the issue to a point where I can live with it.

Daily tabs of glucosimine, krill oil and panadole osteo (slow release pain killer) If you are interested I will give you doseage strenght etc.

Please leave the high bridges alone as life was meant to be fun.

Fight the condition and make that your focus point in life. Plus all positive things. Need a list just ask me.

Regards

Tangles

Thank you Amanda just read your post I am going to look your specialist up as mine has MRI scanned my legs to which she says they are normal even tho my knees chronically ache all the time I'm short of breath and got a nasty pain in my back I need my lungs tested or a biopsy I think I just feel this specialist isn't clued up on sarcoidosis any advice as I know this will be a pricey private health bill if I went away from nhs?

Hi Adam,

Hope your doing OK, wondered if any progress on your joint pain. I still get some, however since my last message I have been put on steroids since October. I still get joint pain, but I was told that vitamin d, the sunshine and multi vitamins are no good for pain it's like fuel to the fire for sarcoidosis. I have also noticed that by juicing lots of green vegetables have really helped me.

Hi Maria

Only getting back now to you, how are you getting on? Any improvements? did you talk about calcium and vitamin d?

Hi Debbie, hope your well, I know how you feel however if you read my posts they might help you.

I have been told to stay away from vit d and calcium.

Regards amanda

Thanks Amanda. There are so much contradiction about this. I had very low d when I did my blood work. That's why I was taking it. I only take 1000 daily. Calcium I don't know since I'm on forteo.

Hey, I was told that sarcoidosis feeds off vit d so when your bloods are taken it will show that it is very low, although it is probably at a normal level. It happened to me where the level was rock bottom and my gp at the time had prescribed me with vit d tablets that one was equivalent to 15 portions of salmon a day, I was taking these one a day, back in 2013, I was living in the UK and the gp didn't know my sarcoidosis history, however when I moved home at went to see my specialist here after been diagnosed again with it he then explained about the vit d and how it looks like your body may have none. He told me that taking them tablets really didn't help me at all and if anything probably helped it along, because it was a short time after that I got really bad.

Sorry... I was diagnosed again with sarcoidosis..... Also my blood showed low levels of vit d and calcium