Is it a side effect or sarcoidosis?

Hey sorry to hear that where are you affecred?

I am seeing a sarcoidosis specialist i think. They started me on 60mg and im weaning down every week by 5mg i dont know but i feel a little rough latley glad to know its the tablets though hopefully i can be off them soon! Thanks for your response. Do you have to have steroids??? Xx

I mean there are other drugs are there ons with less long term side effects x

Hi Katid. I'm a bit puzzled. If you were on 60mg 4 weeks ago and are reducing by 5mg a week, you should only have gone down to 40mg. If you've zapped down to 15mg, that is extremely fast, and you might be getting rebound/withdrawal symptoms. I do have steroids for flare-ups and find that they are a godsend, in spite of any side-effects!

Hey yea I am on steroids for the last 15 months that's why I think your being weaned off to quickly. They need at least 2-3 months to actually start working at the higher dose. The steroids have awful side effects but if your weaned of to quickly it can make you feel like crap. I did get down to 3 mg a day however then I got sick with bad pains and headaches so they upped them to 15mg a day I'm now down to 11 mg a day and I am weaning off 1 mg every 2 weeks till I get to 8 then have to stay on that for... Well not to sure yet. I don't know if there was anything else I could be taking as my doc told me if I don't start the steroids as a last resort I would be dead in 5 years. So better the steroids.

Your right lol i started them in august. So that would be nearly 12! Wow thats gone quick sorry it would help if i gave the right information sorry about that your right! X

Omg really that is scary! No i wrote it wrong its been 12 weeks i started end of august i think to be honest i cant remeber anything! Im so tired and achey! Cant believe how quick its gone. So ive heard about immonesuppresents or something like that. Wonder if anyone else takes anything different. I find excercise is too much atm

Im still working 27 hours a weekand take my daughter out daily (shes only 2 so has alot of energy to burn) but after all that im done!! When you come of the steroids do all the aches stop? Sorry for so many questions i dont really habe anyone to ask and my next apointment isnt untill the 10th of jan. X

I think I have spoke to you before I have a 15 month old daughter and it's exhausting at the best of times, plus I also work 20 hours a week don't think I could do anymore, I get so tired I also get high blood pressure along with everything else lol.

Tbh I wish I knew what will happen after the steroids, I just have no idea. Talk to me whenever you want I also have just you guys on here, I've not met anyone personally with this, I do think meeting people and talking is.good. I think there is a hse place that holds meetings with people with sarcoidosis I think I might check it out.

Are you in the uk?

Oh really where is that? Yeah we have chatted before do you mind me asking how old you are? Do you ever have issues concentrating as weird as it sounds i get so tired i seem to keeo forgetting stuff my other half actually says im like living with dory!!! Haha!!! And yeah its good. But then i really dont knw alot about the desease. I have googled alot but found myself scaring myself so i actually stopped it lol! Gonna be more prepared when i see my specialist next. X

Hey thankyou. That was actually really useful problem is you have no one to ask haha! And i would feel really stupid going into my doctor and saying im fine just feel achey and tired haha! I was actually feeling better untill i got down to 20mg now ive got back to how i felt before so wondering if its no longer having a positive effect. Hope you are well thanks again x

Hello katld, I'm OK right now, thanks.

When you get to about 15mg and below, this is when you must be careful. At 15mg, the period could be two weeks, then the next drop will likely be at 12.5mg and two weeks on that. Then 10mg, 7.5mg, then it may be down to 6mg and so on. You could end up taking 1mg for a while then down to 0.5mg.

It all depends on how you are feeling and what risk is posed of a flare up if you come down to fast.

Remember, it is important to keep your GP informed if something doesn't look or feel right.

I know what you are going through and I sympathise. Prednisolone is not a nice drug and not to be treated lightly or messed with. It even has a diabolical taste and no effort is made to even mask it in any way.

Talk about a bitter pill to swallow, it has no peer.

You will get though this and come out the other side. It may take several months to recover from cortisol deficiency coming off such a high dose. Tiredness and fatigue will be around for a while.

Oh im dropping 5mg a week. But its my first time on them. Ive been fine untill like you said 15mg! My fingers are pure aching! And i feel a little tired but other than that im doing ok. But all the symptoms i had seemed to of gone and now i have them back not sure if thats normal or not. But nevermind. I actually havent seen my gp in months and months x

Katld, you must see your GP, ASAP. For your own sake, please do that before you drop down to the next level.

I can't believe your GP would allow you to do the withdrawal unsupervised and unmonitored. Your GP contact must be more frequent.

From now on, the tapering off will be more gradual.

The risk of a flare up is higher at the lower levels. If a flare up happens, you will probably end up having to start all over again at 60mg and spend months coming of it.

Take it from me, you do not want that. I had just finished a long course of prednisolone in 2014 from 50mg. I hadn't even recovered from that and the sarcoid flared again. I had to start again in 2015 from 50mg, stopping in the November of that year. I have only recovered from both courses just a few weeks ago.

I have called for an apointment. Im not really sure im just following orders from my specialist she literally told to take them drop down one tablet every week. Then come back in january x

If they are 5mg tablets you are taking, that is an awfully fast rate you will be coming down, from 15mg. You will suffer from now on dropping 5mg every week.

Please get a second opinion, preferably from someone who knows more about prednisolone and tapering off.

That flare up I mentioned earlier, it happened even though I took all the precautions of tapering down slowly under a strict regime.

When I was told I had to go on a second course of prednisolone and start all over again, I was appalled at the thought of going through that.

Taking prednisolone has always been a struggle for me even at low starting levels. It doesn't get any easier.

Ok well im going to take your advice and get in to my gp tomorrow im not sure she would know much about the predisolone but i can always ask shes a very good gp i havent been to her though as i thought this was all normal and just part of the package. I will defo ask about how i should take the medication i think i am possibly having another flare up. But idont know what is me and whats the tablets lol but im getting the same pressure feeling ihad. It stopped untillbi got down to 15mg now i feel pants again. I was actually feeling better ieven had more energy. But apparently predisolone are ment to give you fatigue but untill the 15mg dose iwas feel much better thanks for your help and advice though

Yes, good idea. You've done the right thing visiting your GP.

In Australia, your GP is your front line health manager. Anything requiring specialist consultation, is first referred to that specialist via a formal referral by your GP.

After the consultation, the specialist sends a report back the GP with recommendations in it on how best to treat and manage your condition.

All management and on going prescriptions are done at the GP's surgery. Occasionally, the specialist will want to see you to check on your progress.

The way my health varies, I have to see my GP every fortnight. There is always something that seems to happen withing the two weeks between visits. My GP is my lifeline. She is just the best and I trust her completely.

Without that visit frequency, my health can go awry in a very short space of time. Even then, I have ended up in after hours surgeries or in hospital emergency if things go seriously wrong in the space of hours.

Never take sarcoidosis lightly, this is a serious disease with no cure. It's subtlety and complexity belies it's terrible effects on the body. Careful sarcoidosis management is critical to your health.

Similarly, the treating drug, prednisolone, is a dangerous drug if not taken with careful monitoring and management.

I havent taken it anyway ive not really given it much thought. My understanding of it was the steroids were going to clear up my flare (i have it in the lympth nodes around my lungs and heart) according to my specialist she said i may have a flare up and not even have another one and yes it works the same here but i havent seen my gp as i felt everything was ok untill this week. Like i said ive actually been feeling much better untill i hit 15mg. I didnt manage to get an apointment but shes going to call me i hope. Waiting for one now. How lonf have you had this for? Xx Hope ur ok x

Hello katld, I was first diagnosed in 2008 with sarcoidosis, but I think I've had it for much longer. Unexplained lethargy, fatigue and a general feeling of malaise with no definite form have been plaguing me for years, I'm now 53yo.

December 2013 was the turning point, where Sarcoidosis went from an X-ray observable small cluster, to it having spread further in my lungs. The first sign of it was a uveitis attack in October in my right eye, followed by the left eye in December. Both emergency conditions requiring urgent treatment.

You must be on top of any adverse changes to your eyes. Any bloodshot and/or tenderness in the actual eyeball, must be treated as soon as possible. The primary conditions here are Uveitis and Scleritis. Both will cause blindness if not treated. One form of Scleritis does damage from the back of the eye causing necrosis of the eye. This one is difficult to detect just by looking at it from the front of the eye.

As a routine test, I also had to have the chest X-ray as first mentioned. It was then, the full extent of the Sarcoidosis was first seen.

I am at stage 2 of the disease and it is the chronic, severe condition. This one can only be controlled. 

It mostly affects women, but as usual, I'm one of the "lucky" [sarcasm] men who suffer from it.

Sarcoidosis mimics other diseases including cancer. It can affect any part of the body, but it is mostly lungs and eyes. It sometimes follows a set of symptoms but not always. It can take on the characteristics of a disease affecting a particular organ, but not necessarily. This is what makes Sarcoidosis so insidious and difficult to detect and treat.

One blood test I had, showed a huge spike in white blood cells. I ended up in the Oncology Unit at the hospital with suspected leukemia. Then, just as mysteriously, everthing returned to normal. We now suspect Sarcoidosis was responsible for that in 2009.

My joints ache, I do have arthritis, but made worse by the sarcoidosis.

I sincerely hope you have the one that can be cleared up after a few years and return back to full health.

Hello sorry in the late reply for some reason my notifications goto my junk folder. And it wont let me unmark it.

I had problems with my eyes awhile turns out was just a stigmatism how do you know what stage you are at? I have a feeling i have had this for a long time. I have been complaining about these symptoms for ages. But untill i got pregnant had my daughter and still had the same rib pain 2 years later no one took me seriously. My main symptoms were generally feeling unwell fatigie headaches.... main thing headaches. They get so bad. And i just generally never felt right this started about 20 yrs old. I also couldnt drink i had one drink and my tolerance just went. I can become majorly like im hungover and sick to anything of one drink. Its like i become a complete light weight safe to say i dont touch it these days. Sorry to hear about you having the chronic stage thats pretty rough. Are you in good shape? Happy and healthy as can be i hope. Do you get many flare ups please excuse the amount of questions my knowledge on this is very little. Even though i am starting to read up alot more on this. Also i have to say no one really chats on here. So i feel stupid asking.