Another Uveitis Flare Up
Posted , 5 users are following.
I've not been well. First there was a general feeling of nausea and lethargy in the past 2 weeks. From there, an intense migraine with visual aura. Pain lasted for 5 days, ending with the usual ulcerated mouth (figure that one out), last Monday.
Got over the "hangover" effect of the migraine late Tuesday only to develop intense pain within my left eyeball and a deep bloodshot.
Wednesday (Australian) visited the optometrist and was told of a severe flare up of uveitis. I'm now administering Prednefrin hourly and Atropine every 6 hours.
These uveitis flare ups are a major source of anxiety.
My chest is more painful than usual when I breathe and tighter.
I hope this isn't a precursor to a sarcoidosis flare up in my lungs,these signs are not good.
1 like, 17 replies
alison50806 zss
Posted
zss alison50806
Posted
Hello Alison, yes I'm visiting the doctor today. The optometrist was able to prescribe Prednefrin drops and I already had the Atropine script on file.
The Prednefrin brought relief very quickly as I expected it to. It is the wider implication of a sarcoid flare up that has me worried. The thought of going back on a heavy Prednisolone regime fills me with dread.
Thank you for your reply Alison and I hope you are coping as well as you can with your sarcoid.
InRemission zss
Posted
I'm sorry, I know how scary it is to feel that the Sarcoidosis may be coming back. I've had a few very real scares and the dread of having to start treatment all over again is overwhelming and awful.
Your symptoms may be a sign of the Sarcoidosis flaring up, but they may not be. My 2 recent instances in the last few years seemed almost certain, even the Drs were pretty sure it must be the Sarc, but tests came back and it wasn't.
Unfortunately you won't know until you know, and that sucks.
It's such a stressful time that everything is bound to feel worse, so please cut yourself a little slack and find some kindness. You deserve it. Best of luck to you <3 <3
zss InRemission
Posted
Having spent most of 2014 on 50mg then 35mg of Prednisolone and tapering it off, I was just getting over that when the Sarcoid flared again. This, after just 2 months from the last dose of 2.5mg of Prednisolone.
The entire course had to start again through most of 2015. Tapering off finished in late December.
At that point, I started suffering from low cortisol levels after the Prednisolone knocked out natural production and without the artificial replacement.
Endless sleeping and fatigue followed for most of this year. Last month, I finally felt well enough to be able to do something.
I was warned, the longer you are on Prednisolone, the longer the after effects. In this instance with effectively most of 2015 on it, the fatigue lasted around 11 months.
So yes, after 2 years of Prednisolone and nearly a year of recovery I am dreading any more signs of a Sarcoid flare up.
I have so much work to catch up on and this would be an awful relapse.
Thank you for your encouragement, RI. I hope you are coping with your Sarcoid as well as you can.
zss
Posted
Went to my General Practitioner, she diagnosed a severe sinus and ear infection. It is the thing that is causing the tiredness and probably the high blood pressure.
Now I am having to take anti-biotics. Not something I welcome because I have a very limited range of these drugs I can take.
I am allergic to Penecillin, I have the possiblility of going into anaphyllactic shock if I were to take it.
As it is, my immune system is stuffed so get hammered when infection develops.
Right now, in South Australia we are just getting over an abnormally cool, wet winter and most of spring was the same. This means plenty of plant growth that adds to fuel loading when the bushland dries out in the coming summer. As an attempt to keep this fuel loading down, it is deliberately lit and burnt by fire fighters. This is to stop potential bushfires (and the firebug b*st*rds who light them).
Unfortunately, this procedure has it's consequences for asthmatics like me, as the smoke can be lethal. Yet another thing to watch out for. I drove though smoke on the way to uni one year and ended up in hospital for 4 days.
zss
Posted
Some positive results for a change. The uveitis has cleared and now I'm tapering off the prednefrin... as you do.
The drops did make me more nauseous until it settled down after a few days.
I went back to the optometrist for a follow up confirming the uveitis had cleared, but told me that I have now developed a cataract in my left eye.
And what has caused this cataract?
The prednefrin eye drops which is prednisolone for the eyes.
I was expecting this to happen as some point, owing to the fact that I have taken large amounts of prednisolone over the years in oral form as well.
Still, I needed this like I needed a hole in the head.
alison50806 zss
Posted
zss alison50806
Posted
Hello Alison, I'm withdrawing from the prednisolone eye drops. The effects of this are just like withdrawing off of the much stronger tablets. The nausea, the sleepiness and general feeling of malaise yet again.
Went back for the second follow up at the optometrist. Whilst the uveitis has cleared, what he said next caused me some concern.
It is now apparent that I have optic nerve damage in both eyes. The optometrist was concerned enough he want's me to come back for more extensive testing. I asked him what has caused this damage, already knowing what the answer was.
After two years of taking large amounts of prednisolone it has now done the expected damage. It can only get worse from here if I have to go back on more prednisolone in the future.
But yes Alison, you are right, the other benefit is life itself.
zss
Posted
The uveitis has flared again in the left eye. It started last night 2016/12/09
I asked if it could be as a result of my "immune system" reacting against another sinus infection and is causing the uveitis as it attacks everything. His answer was not necessarily.
This answer is now causing me anxiety, the implications are the possibility of the sarcoidosis flaring up. I just can't contemplate the thought of going on another 9 months of prednisolone.
My optometrist is beyond doubt saying I have cataract and macula damage. Both attributed to the prednisolone.
I feel like crap, the asthma spays aren't helping the asthma, the sinus infection is causing a burning pain and a bloodied nose.
Notice one thing, I try never to say "my asthma", "my sarcoid", "my uveitis". They don't deserve the moniker of my ownership.
marie82928 zss
Posted
Zss: I can tell you I was recently diagnosed with thrush in my mouth. It is caused by a weakened immune system. So now I have to gargle with a new med. I hope you don't ever have another flare up. My GP contends that some patients have sarc for 5 years then it disappears!! I would like to think that is true! Take care.
zss marie82928
Posted
Hello Marie, the uveitis has flared again in the left eye. My treating optometrist has suggested there is an "underlying driver" to this. I know what that is, the sarcoidosis could be flaring up again.
The signs aren't good either. I have the same general off-colour feeling I had in 2013 and tight, sore laboured breathing. The asthma is not involved.
If it is sarcoidosis, I have contemplated not having prednisolone again. I just cannot go through with nine to ten months of that and tapering off.
I'm going to have to be persuaded it is all worth it.
marie82928 zss
Posted
Yes, zss: I am at the same place regarding prednisone. I really never want to take it again. My GP is concerned that my taper is too drastic. from 40mg to 20mg to 10mg. He thinks that the taper should be more gradual.
My daughter has taught me some breathing techniques. They do not have a scientific basis. It is simply breathing in through the nose, holding the breath at the top, then releasing it slowly through the nose. She claims this forces deeper breathing. It seems to be helping me.
My stepson and another young man I know (28 and 30 yrs old) hade one sarcoid episode and never had another. My stepson's was manifested in his gland behind his ear. He was treated once and it was done. The second young man had sarcoidosis of the eyes. Again, treated with one round of meds, and done.
So we need to stay hopeful. I'm typing with one hand as I broke my wrist in November while dancing with a man who was a terrific dancer. He put me into a spin, then I was supposed to grab his hand---I missed and fell backwards landing on my wrist! haha! So, because I have a compromised immune system, I must use a bone stimulator to help the healing process (prednisone inhibits healing). Now I have thrush in the mouth (from the weak immune sysem). Its good that I'm retired, so I do have time to take care of myself! I remain hopeful for myself and for us all!
Best regards, Marie
zss marie82928
Posted
The breathing technique I learned is diaphragmatic breathing where you force air out with your abdominal muscles and use the elasticity of your diaphragm to draw air back in.
It is more efficient than using just your lungs.
I went to my optometrist again yesterday, I still have uveitis cells in the eye. It is causing a lot of concern to my optometrist, this in turn is causing me anxiety.
Blood tests are likely next. I dread the results if it shows the tell tale sign of rising calcium levels in the blood. This is the sarcoidosis marker.
marie82928 zss
Posted
You should be seeing an ophthalomologist, not an optometrist. I hope things get better for you soon!
zss marie82928
Posted
Hello Marie, yes, I did do that in exactly 3 years ago on 26/12/2016.
That was the day I had to go to hospital after feeling like crap the previous day. I saw a registrar who saw the extent of the uveitis and ordered chest X-rays.
The uveitis was out of control, getting worse by the hour and the X-rays showed a widespread expansion of the sarcoidosis.
From that point on, I have endured the sarcoidosis and the prednisolone. I've never fully recovered.
Right now, I'm still tapering off the Prednifren (prednisolone) eye drops. I hope the uveitis doesn't come back after this.