As you may remember me, I am suffering with lung problems associated with my RA and am being treated with PRED while waiting to see if they can shift some fluid from around my lungs. Appointment tomorrow with Rheumy (who has parkinsons disease!! ah bless but I trust him! and the Chest Doctors at 12.00 noon. Crunch time to see whether I have to go back in tomorrow!! GOD I HOPE NOT. Anyway I haven't slept for 3 days, my gums are covered in mouth ulcers and my eyes are slightly bulging, has anyone heard of any side effects for taking high dosage of PRED. Been on 40mg for past 3 weeks. I feel like I am burning up and my mouth feels numb! Last few days been feeling really sh*t and very low. However my daughter Eloise made me a card today hoping I would get better! Can't be easy on kids when their mum is not well!! This forum has been a god send....Will there ever be a cure??????? I am normally so strong but just lately I cannot fight!! I'll keep you posted....
I've never been on that high a dose of prednisone. 10mg is as high as I have gone. I'm now on a maintenance dose of 4mg along with plaquanil, MTX and enbrel. I can immagine what you're going through. Even with the low doses I've been on there have been reprecussions like bone thinning and the beginnings of cateracts. I sincerely hope it goes well for you tomorrow. Kids can be such a Godsend and I think they have a innate understanding when moms are sick. Mine are grown up now and they are the joy of my life. Bless you, LindaHi Ipercy and Linda,lpercy, have them check you for Wegener's. It is an autoimmune disease that can cause bulging eyes. I've been on that high of a dose for a short period of time. Actually, I've been up to 60.
Each person is affected differently and some people are even allergic. But it sounds like you are sick from something. Look up Wegener's on the Internet and see if it sounds like anything you are experiencing.
Lung problems are scary. All of this you described sounds hard to deal with. Hang in there. It sounds like they are taking your problems very seriously and that's what is important.
Kim, sometimes prednisone is the only choice in order to get things under control. If they can be avoided, then do so. But since they haven't found something else to get your inflammation under control, this might be a have to situation. That is a short term dosage of prednisone and often will get the symptoms under control while your doctor figures out what to try next for you.
Unfortunately, even a one time dosage of prednisone can cause side effects. But most of us that have serious side effects have been on dosages for longer periods of time.
Hopefully, you can do this tapered dose and then be off of them. How high is your MTX. Sometimes they can raise that. I'm at 25 mg, which is about as high as they will go.
Hi Deanna,Kim, there are lots of side effects. One, if you are on either prednisone or plaquenil, you need to have your eyes checked by an opthamologist (not an optometrist) on a regular basis, every 4-6 months. Prednisone can cause glaucoma (that's me) and cataracts. Plaquenil can cause changes in your color perception. Fortunately, with Plaquenil, they just take you off and the problem reverses itself.
Prednisone doesn't. It can also cause high blood pressure, weight gain, moon face, bone necrosis (bone death), bone detoriation (costochronditis) diabetes, etc. It also makes your skin thin, easily bruising.
That is why so many people avoid it like the plague. But it can also save your life. If the inflammation levels get too high in your body, as Ipercy is describing in her case, it can kill you or cause permanent damage to your organs. So, sometimes you have to take it.
Also, in the early stages of diagnosis, doctors need something to get the inflammation down to a reasonable level until the treatment meds have time to work which can be over the course of several months.
Prednisone is a tool just like any other medication. You have to decide whether or not you can tolerate using it or not using it.
I've been on it a long time, 6 years. I'm tapering at a very slow rate. Many people on the boards have been on it and won't ever go on it again. If they do, they do a tapered med pack.
I need to get off the prednisone because they are really worried about the bone necrosis. But you can't just go off this medicine suddenly because it can cause adrenal shock. When you take predisone, your adrenal gland shuts down it's own production of cortisol (I think I'm explaining this right). Prednisone must be tapered so that your adrenal gland can restart it's own production again.
I hope I've explained it well enough. Prednisone has saved my life. But it also has caused damage. They think the Glaucoma may be reversible once I am off the prednisone. My eye pressure levels are directly related to the amount of prednisone I'm taking.
Kim, have they tried you on Plaquenil? They tried that with me before trying Enbrel. I haven't had any side effects from it at all and feel like it helped me some, but not enough in my case. No, they haven't tried Plaqenil...I'm only going to take this for 2 and a half weeks or so...But I'm going to ask for that if this happens again...I've been so inflammed for so long and finally, FINALLY he is taking me seriously about it...last night I could actually feel my joints in my fingers...it was awful..thank you so much for easing my mind...Yes, he thinks this is what we have to do right now...and I let him know right off that I was freaked out about it, so I'm going to do it this one time until we see if the ENbrel works ( I just had my 6th shot) on wednesday...but I will do plaqenil over this next time....thank you soooooooo much you guys...have a great weekend!!!!Deanna,
I am only on plaquenil for RA. It has helped but I have more overall achiness. My fingers and feet are stiff and hurt some but the achiness is what really bothersme. I can't tell sometmes if it is my back or fibro or RA causing the pain. Is this the way RA acts at times???? Also, You said eye problems with plaquenil are reversable but I thought I read somewhere that the problems can continue even after it is stopped. Have you read that? Pat
okay, today is my 3rd full day of pred. not sure, but I might be a little bit less swollen at times? but I may really just be looking for it too much...no other side effects at all so far, thank godHi Kim
I am in the midst of my worst flare ever - every joint hurts unbearably. My rheumy has put me on 60 mg prednisone daily, for 2 weeks (then it will be tapered) to try and get my inflammation under control. It is helping me hugely :)
Best wishes,
I'm thrilled that you're getting to take a breath...I haven't noticed a huge difference (I"m on smaller dosge), but it's a little better...I was really afraid of the "mood change" aspect...I tend to get kinda down when I'm aching so much...but I've been fine and feeling a little bit more like myself today than in months? YOu too? How fast did it work? Did you start at 60 and go down a little every few days? hope it keeps going well? sayin a prayer...KimOOPS...Wendy, just re-read your post and you said right there what your dosage was...duh....all the rest is the same though..Hi Everyone
Just a quick update to say that I was discharged from Hospital today after 7 days in hospital having another chest drain, even better that I didn't get a collapsed lung!! Anyway outcome is that I have to go to a London Hospital to have surgery called VATS which removes some of the lung lining and have some talc inserted into the chest wall. I have a 80% chance of success!!!! Anyway glad to be home with my family....Being looked after by my husband and waited on hand and foot - Just wondering how long I can keep it up! he he he. Also they have reduced my PRED to 10 mg for next 7 days then I can stop!!! HOORAH.... Anyway their plan is to up my MTX every 4 weeks to a maxium of 20mg. Currently taking 12.5mg.... Bloomin RA, just sometimes you wonder why me? Suppose just want to be healthy - Is this possible with RA? BIG BIG THANKS FOR YOUR SUPPORT.....
You can stop prednisone from 10 mg? No, you can't!!! Please tell me they're going to have you taper it. That's very, very dangerous, and it sounds as though you've been through enough.lpercy, so glad you are out of the hospital. I agree with Fiona, I haven't heard of anyone going from 10 mg to nothing.
I'm also confused about what they are doing for your lungs long term and RA specifically. Upping the MTX will help. But are your lungs keeping them from trying anything else? Besides MTX and biologics can cause problems with your lungs if you are prone to problems. Make sure you ask lots of questions regarding your treatment and research it when you are able to.
You still sound very sick.
Pat, reguarding your question on Plaquenil, no I haven't read that it can continue to have problems. I've been on it a long time and so I have looked up anything recently. I believe I got that impression more from my opthamologist. It is really critical to me since I'm an artist and LOVE colors.
Regarding your question regarding the achiness, it can be caused by RA and FM and deciding which it is even a hard problem for your doctor. But that's where you need to go. They will ask you questions, examine you, hit those trigger points and should be able to tell you what is causing more of the achiness. I have both and I usually associate pain and inflammation with my RA and overall fatigue and achiness with the FM. But is just my interpretation of it. I don't know what makes the doctor decide which is causing the most problems.
However, there is hope either way. If it is RA, then your doc might be able to adjust your medications to help. If it's FM, then your doc might be able to also add meds, encourage exercises that you are up to. I know my FM symptoms are less when I can exercise (gently) on a regular basis. With both of them, I must get enough deep sleep or I am in a world of hurt.
Hi Kim
Are you feeling any better yet? I hope so :)
In answer to your question, it took 3 days of 60 mg pred to start to feel less sore in every joint. Now I'm on Day 6 and the only joints that hurt are the knee and hip that are damaged.
I'll chime in about a prednisone taper too. 20 was the max and only for three days but the whole thing was tapered carefully right down to 2.5 mg/day for three days before going off.
I love my Prednisone paks! I know there is lots of long term side effects, but sometimes I just don't care. I need to feel better NOW! I'm living for today. My Dr. won't give me much Prednisone, seems like everyone else hates it. Did you know that there are some studies that suggest that prednisone actually slows the progression of RA!?!
Pass me another pak.....
I had read about those studies, Emma - I think there's a lot of conflicting advice. As with everything about RA, you have to pick your poison. Arava & MTX may destroy my liver - but I can walk. I still take prednisone because I want to function. These are simply the tradeoffs I make. I'm living for today, too. I need to get my daughter grown & on her own. Then I can make decisions about tomorrow. Same here Fiona, I have 3 kids who need lots of me now!HI Wendy,