Cataracts and Abruptly stopping prednisone- help!
 

Hey guys,

Sorry I haven't been on in a while, I haven't been feeling well.

I noticed a week and a half ago that my vision in my left eye particularly was getting pretty bad. It seemed like I was looking through a really dirty window. Whenever I close my right eye, lights looked like splatters of colour (especially red and green lights)...So I had a feeling that i might have cataracts since I have every other side effect of prednisone. So I finally got in to see an opthamologist yesterday, and he confirmed that I have cataracts in both eyes. This might not be that big of a deal, but I've been on prednisone for 10-months and am only 27, so this is scary to me...

Well, I had weaned down to 10 mgs EOD, and I decided a couple of days ago not to take it anymore to see what would happen. This is day 4, and I feel alright, although I don't have much of an appetite and feel a touch shaky, and a bit cold.

I don't know what to do. Today is the day I'd normally take it, but I'm wondering if my adrenal glands would have kicked in by now, and if I take it, I'll just be starting this stupid process all over again. The MG weakness has been fine. I'm really just worried about whether my adrenal glands have started working yet.

What do you all think? I could really use some advice about whether they should start working by now from anyone with experience with this. I know it's irresponsible for me to have done this. I'm just so miserable being on it. The blood sugar things is horrid, and I' wondering if that's what has caused teh cataracts to show up so quickly.

I've also noticed some other odd symptoms. My breasts are really swollen, painful and sensitive. I feel like i'm going to have my period, but I just had it two weeks ago. I'm wondering if my sex hormones have been affected by stopping the pred., and maybe that's the cause?

Thanks again, guys!

Cataracts and abruptly stopping prednisone-help
 

Nicky,
First of all I am so sorry you found out you have cataracts. Geez there is no end to the devestation pred causes!!! Ok now for stopping the pred. I can't speak from experience because I am STILL trying to get off of it myself but my gut instinct is to not stop cold turkey. I really think after 10 months the risk is too great. From what I understand about weaning off pred it is when you get below 10 mg that you have to be very careful. My fear is that you will put your body into a state of shock and will go into a crisis if your adrenals have not kicked back in. Can you maybe try taking 5 mg every other day for another week? Like I said I can't speak from experience but I think going from 10 mg to nothing is too quick. I totally understand you wanting off of it!!! I am desperate too and am at 20 mg EOD and so badly want to drop to 15 mg because I am feeling better since stopping the cellcept and decreasing the pred. Is it possible that some of the symptoms you are experiencing are side effects of the Imuran? You might want to check that out. Considering the horrible way I reacted to cellcept I think that may be a possibility. Maybe someone who has come off the pred will have more info and advice. Please keep us posted on how you are doing!:hug:
Kendra

Hey Nicky,

I am so sorry you have had so many terrible problems and side effects from the pred. I refused to take it since I was diagnosed in 01, so I don't have any experience with it. What mg were you taking and how long did you take to wean down to 10mgs EOD? I agree with Kendra and from reading the posts here, that stopping so abruptly may cause some serious problems. I hope that's not the case. I'm sure others with more experience and knowledge will post soon and be able to advise you better. Hang in there.;)

Hugs,
Pat

1. To my knowledge- when EOD regime has been established the adrenal gland IS already doing some work.

2. stoping prednisone will NOT remove or heal cataracts.

3. normally rapid taper jumps are NOT advised; but what is done is done. I wouldn't panic about it.

4. adrenal gland indeed needs SEVERAL MONTHS to reestablish it's normal functioning (at least in your case- using pred for 10 months)

Best :hug:
Tom

Thanks for the replies, guys!

Well, I decided to take the prednisone today. It was just stupid for me to have tried that...I wasn't feeling deathly. It's highly possible that my adrenal glands were working, but I couldn't be sure, and didn't want to take a risk. So I took the 10mgs today, and will resume the EOD for a couple-few weeks...


Thanks, Tom...I was thinking the same thign, that since i've been on EOD, maybe my adrenal glands have kicked in. Here's the thing, though...I wake up sorta late:o....I usually take my medication at like 2pm:o...So I was thinking that could affect the ability of my glands to kick in...I know- note to self-- Wake up earlier...


Pat...I was started on 60 (one month), then upped to 80 (for one month), then down back to 60 for maybe 3-months, then 50/40 for 2-weeks, 50/30, etc., then jumped to 30mgs EOD for 3-weeks, 20mgs for a couple, then here I am @ 10...At some point, I sorta stopped following a regular schedule in terms of the tapering...As i tapered, I found my arms and legs stronger...More energy...Joint pain returned (I had mild-moderate arthritis), but didn't bug me, in fact, I saw it as a sign that the prednisone was losing its power over my body...Cuts were healing again, facial and neck swelling going down, etc...I think it's great taht you resisted this med.. I know that it can help some very much, but it just caused problems that weren't worth having over the MG (which was still a strong force during the therapy anyway)...

Thanks, Kendra...I totally agree with you, Tom and Pat...Going off like this, even if maybe my adrenal glands were producing some steroids, was a silly idea, and i'm back on it...This is something else I was thinking...I'm prone to infections, so even if my adrenal glands were sorta working, what if I got an infection? I have a feeling they wouldn't have been up to the job in terms of providing enough cortisol...That's the main thing that made me go back on it...I'm gonna get off this the right way....Very slowly...I think the Imuran might be causing side-effects...Like maybe headaches, and I was thinking about the breast thing, or hormone thing...I remember someone on this site mentioned that when they started taking this, they started having two periods a month...It could have been from a different med. they were taking, but they were thinking it was from this, if I recall correctly...Maybe it does affect our hormones...I still go for liver tests every week...I'm gonna ask my doc. to check on this stuff...It's been such an annoying last month or so...I have a lump in my breast which has changed...It's no longer spherical, has grown 0.5 cm since it was last biopsied, and i have to go for another biopsy on Monday, and prolly get it taken out because it's so big, and they're concerned about lumps with me since it looks like I might be a tumour factory...

So you're completely off the cellcept now? That's great! And I hope your memory and everythign has improved...I'm so sorry you went through that...That would be completely scary...Good that you were your own advocate....I think we all know when something's not right, even if it can't really be measured....We are our best advocates; the owners of these bodies...How's the MG going?

Well, things will be alright...I'm glad I'm pretty body conscious, even though that might be bad sometiems...With my eyes, I originally went to the hospital, and I told the doc. on call that I was 90% sure I had cataracts, and he looked at me like I was insane...Even when he checked my eyes, he coudln't see anything...But he said taht he believed the sx I was experiencing were real, just not from cataracts...When I saw the opthamologist, he said I was right and it was good that I followed my instincts to get to a doctor because they're small enough that the sx they'd cause could be ignored or not noticed...My vision is still over 20/20...

:grouphug:

Sounds like a good plan Nicky. So glad to hear you're already seeing some positive effects from weaning down to 10mg. Very sorry to hear about the lump in your breast. Good luck on Monday...I'll be keeping good thoughts. ;)

Big Hugs,
Pat

Nicky, I had adrenal insufficiency once. Well twice really cause my cortisol crashed during pneumonia. My body did not handle the change in time zones when I went to Europe. Jet lag is basically cortisol getting confused! ;) That and the stress of the trip gave me a horrid drop in cortisol. I was hot, I couldn't stop sweating, dizzy, extremely tired to the point of not being able to keep my eyes open. It was one of the worst feelings I've ever had and it took 7 days or so to recover (had blood tests to confirm). Long story short - no, don't abruptly stop that damn drug.

I'm sorry you have cataracts. My Mom has had the cataract surgery and did really well with it. How cloudy is your vision?

You should talk to your prescribing doctor (is it the neuro?) and get a plan for withdrawal. It helps to have an endocrinologist in on the discussion. There may be a way they can help make it easier. You'll need to have your cortisol tested after you are off and maybe while you are going off.

I don't want to scare you but an adrenal crisis can come on really quickly. It can literally knock you out, where you won't be "awake." It is dangerous. A friend of mine has gotten close to that a few times.

So please, be sensible, like everyone else has said. Tom's spot on about all those points too.

Another thing Pred does is to keep you from absorbing nutrients. Are you taking enough A, B's and Vit. C? I still worry about you having Celiac, you know.

Just be careful.

Annie

Nicky,

I have missed your posts recently and I hope you feel better soon. I wish I had something to add about getting off Pred, but I know nothing. I am thinking of you. Let us know how you are doing. Take care.

(Sorry for the short posts...I am busy with my kids recently. School is almost over and there are so many school activities going on, I am having a hard time keeping track of everything I need to do.)

:hug:

Hi Nicky,
Too bad for your cataract, but I'm wondering whether you could have another Pred side effect: glaucoma...
I've been taking Pred for almost 3 years now, up to 75 mg/d, down to 5 and now up again to 60 and presently tapering at 50.
I had cataract surgery on one eye before MG and on the other eye after 8 Pred months. I have also 9/10 vision with that eye but not in a normal way, rather hazy and definitely different from the vision I had before surgery (down to 2/10...).
I had high internal eye pressure (over 30) on both eyes, effectively treated with eye drops (pressure down to around 15).
My ophtalmo is puzzled with what I tell her and my neuro says that MG doesn't affect vision (which I don't necessarily believe).
My personal opinion: the optical nerve has been affected by the glaucoma, as my vision seems to be lacking some pixels uniformely spreaded.
My advise: get yourself tested for glaucoma, because these eye damages are irreversible whereas cataract is easily corrected by surgery.
Maurice.

Hey guys,

I feel sorta sure that the cataracts have been caused by the extremely high blood sugar I had, which started as soon as I started the prednisone.

Here's a feather in someone's hat: I foudn out that my aunt (dad's sister) has genetic hemochromatosis. It's considered the 'Scottish' disease (Scottish on both sides of family), so I'm now wondering about my arthritis which I mainly had in my index and middle fingers on both hands, and this quick acquisition of diabetes I've had. My aunt and dad both have 'iron fist,' non-alcoholic fatty liver syndrome, which my dad's mother had as well (as well as iron fist). My aunt and grandma have never drank alcohol and/or smoked...Anyway, I'm sorta rambling...I haven't been tested for this yet because I have so many problems that I'm just not ready to bring this to the table yet...My aunt has started getting phlebotomies for it...Anyway...

So I'm thinking that if I have this, that might have predisposed me to diabetes which the prednisone uncovered, and thus these cataracts...I was tested for eye pressure, and mine's normal, thank god...

I'm starting a supplement which is specifically for cataracts- antioxidants. ALso bought some liver since it contains such high levels of vitamin A...

Maurice....Doesn't it suck to have to take the prednisone again? God, I hate this crap with a passion...I never wanted to take it, but my doctor says that diabetes and osteoporosis, cataracts, and all that are good trade-offs for MG. I really disagree, though.

The pressure in my eyes is 16, not sure what 'normal' is...I've heard of some people having trouble after cataract surgery...Btw, is your vision darkening around the periphery? This is a sign of glaucoma, apparently...I don't understand what your doc. means when she says taht MG doesn't affect vision. Does she mean that it doesn;t cause blindness? I agree with that one...I can't remember if your vision is affected by MG (double vision, drooping)...I've always considered mine to not be, but I think it's just that it's mild compared to my other muscles which are affected. IOW, if only my eyes were affected, I'd be a-okay, and wouldn't consider it a disability at all, even though they ARE affected somewhat, know what I mean? It's just not even moderate...Very mild...


Someone somewhere said prednisone is like a credit card: Enjoy now, pay later. I agree, except I didn't enjoy much to begin with!

Bit bitter...Sorry if it's coming through a lot! lol

Nicky

Nicky, I'm sure you've already done the research. If you have hemochromatosis, it's doing damage to your body NOW. You need to go get tested. Please don't wait.

http://www.labtestsonline.org/unders...mochrom-3.html

http://www.cdc.gov/ncbddd/hemochromatosis/faq.htm

And you know what other disease Scot's and other Northern Europeans tend to have . . . ;)

Annie

Nicky, good news: your value of 16 for eye pressure is normal!
I initially had ptosis and DV but that went away after 2 months with the Pred treatment.
Yes, it is highly disappointing to have to go up again with Pred. I went into a relapse when I tried to go from 5mg/d to 4 combined to a vaccine shot last September.
Since then, I learned several things: forget shots when you have MG, never taper more than 10 % Pred at any one step and the last one: if you manage to go down to 5 mg/d, consider staying with that dosage, as it is about the natural cortisone production for my weight (75 kg).
What my neuro says is that MG doesn't affect the eye muscles which control focusing and sharpness (crystalline muscles?) but some people mention " blurry vision" which makes me believe she is wrong...
I had a problem after my first eye surgery, it is called "secondary cataract".
When they change the crystalline for an implant, they keep the envelope which is around the crystalline and there is a probability of 50% that, within 5 years, that envelope get clouded. The treatment is quick, effective and simple: Yag laser shots (around 15 in my case) lasting for a total of less than 2 minutes.
Maurice.

cataracts and abruptly stopping prednisone-help
 

Nicky,
I am glad you decided to take the pred and it was not stupid! I totally understand how desperate we can get to get off this stuff. I LOVE the saying about pred being like a credit card. I have never seen that before but it couldn't be more accurate.

Yes I am completely off the cellcept. I am definitely feeling better since stopping it. It only took a few days before I started feeling like my head was coming out of the fog I had been in. I still have times where I feel pretty foggy headed but there is definite improvement. The MG is going pretty well. I am feeling alot better, still have to make sure I don't overdo it on my good days but I have upped my vitamin intake and started eating mostly fruits, veggies, nuts, fish and rice and it has made a world of difference.

Nicky as for the lump in your breast. Try not to worry even though I know that is sooo hard. I had a lump removed when I was 18 that was benign and had another taken out that my Gynecologist found during my yearly exam. When they went to biopsy it it literally started disentegrating. It was a cyst that ruptured during the biopsy. Is the spot sore or tender? My first one was but my 2nd wasn't. Please let us know how that turns out ok? :hug:
Kendra

Annie,

I know...My aunt keeps reminding me to make sure I get tested...She keeps sending me emails with copies of her results with little notes from her doctor saying that everyone in the family needs to get tested....On Tuesday, I'm going to see my doctor and talk to him about this...

The Celiac's is always at the back of my mind...I will get the testing at some point...It's just that I had a colonoscopy + duodenoscopy before, and everything looked great apparently...but I never did have the antibody testing....*sigh* I will get it done, though...It's always been a concern...I think I just don't want to give up wheat...It's so delicious, and it's in everything!

Neutro,

Yes, I was so relieved when the pressure turned out normal...*Phew*

That's one of the first things my neuro. told me- never, ever have immunizations from this day forward....She's said that she's had many patients who've had to be hospitalized because of them...She just doesn't want to risk it...The immunizations include the dead ones...

Tom posted something on the thread that Jana had made for you and I agree with him...I think MG does cause blurring...That was one of my problems for ages, but because 'blurring' wasn't considered an MG problem, I figured it was from something else...

I hope that you get well very soon, and don't have to take this prednisone anymore...It's so unpleasant, but I understand that it can be the better of two evils...

Kendra,

Thank God you're feeling back to yourself...I was so afraid for you when I was reading about the cognitive problems...That's excellent that the MG's doing well, even though you've removed this treatment...i think that is excellent news...No more having to worry about the other side-effects which would come later...That's a major load off!

I'm not too worried about the lump. I feel almost 100% sure it's just the fibroadenoma...I noticed it changed shape like the day after my thymectomy, so maybe when they were doing the operation, it got sorta flattened? lol...That's what it feels like....Just feels flatter than before...If the procedure isn't too invasive, I'm gonna have it taken out...Otherwise, if I feel certain that it's nothing, I'll just leave it...

It's definately not sore...It's just very hard, and very close to the surface of my skin...It's not one of those ones that you 'lose,' where it moves around a lot. It can be moved, but it's pretty 'rooted' in its spot, and I know precisely where it is all the time, and have no trouble finding it.

Thank you, guys, for the support! I really appreciate it! :)

:grouphug:
Nicky