Does anyone have puffy eyes from pred? | Arthritis Information

I am down to 5 mg a day, started @ 15 in June 06. So far, so good.

I have gained 10 pounds, not sure if it is from pred. or lack of exercise....probably a little of both. The full face is slowly diminishing, still have the puffiness at my collar bone.

I never had bags or puffiness around my eyes until this lovely prednisone. Has anyone else experienced it, and if so, when does it go away? I have heard that we have to be off prednisone for a while for some the weight to go away.

I have done the 1 mg a month taper starting at the 10 mg. dose it seems to be working. There is hope...so let's all hang on!

Janet

Hi, Janet!!

Good to see you on here again. I've missed you and wondered where you were and how you were doing. Glad to hear that you are down to 5 mg. I didn't get the puffiness around my eyes from prednisone - just everywhere else it seems. The major spots (like back of neck and moon face) did go away once I quit prednisone. I am still trying to lose the 36 pounds I gained. Seem to be stuck after losing 15, but then got de-railed with a heel problem so couldn't walk well for 5 months. Should be better now that the heel is better (but I still seem to have that big appetite I got while on prednisone).

Keep up the good work; you'll get there.

Reni

Hi Janet, I was one of the lucky ones who didn't gain weight, but had the moon face and swollen things at my collar bones (like golf balls are buried in there). Also, very, very puffy eyes. Both got better when I got under 10mg and much better when I got under 7mg. I'm at 6 now, about to go to 5mg. There is a marked difference in my eyes everytime I drop another mg. I can't wait till it's all gone! I almost recognize myself. Good to hear from you. Where have you been?

I didn't gain weight either. I was probably 20/25 pounds overweight when I started taking it. I've always had puffy eyes, I've always blamed that on hypothyroidism, since I have read that a lot of people with hypothyroidism have puffy eyes. However, my eyes did get puffier and even picked up another space to puff up.

I'm down to 2.5 prednisone. I was on 3 for a week and decided I had a whole bunch of 2.5 pills and I would take them until next week when I start on the 1mg.

I haven't noticed too much happening with the decrease but I am on methetrexon (sp) too. In the height of my pain before prednisone, I had groin pain and that basically is where I get twinges now. That might be because I exercised a bit too much in that area. Not sure. But nothing else, thank goodness, hurts. Mary

Betsy and Reni,

Gee, I was so surprised that you would notice my absence. I stayed off the forum for awhile, just wasn't myself and needed to back off. I have the type of personallity that I tend to take on everyone's symptoms, and I was doing more harm than good....(to other PMRers and myself)

Betsy, thanks for the encouragement regarding the puffy eyes. I am disappointed that I still have puffy eyes, especially being at 5 mg...just goes to show how we all react differently to this lovely prednisone.

Reni, glad to hear that you are recovering from your heel issue. Walking is so good for the body and mind....

Mary, I, too, have groin pain, but I ignore it. I had it before I was diagnosed with PMR. Don't know if it's related to PMR of just plain "ole" arthritis in my hip that moves to my groin. I have some pain during the am, but, that, too I ignore. Thank you for your reply.

Janet

Dear Starbright57, Just read your post re prednisone reduction. Did you mean you are going to drop from 2.5mgm to 1mgm? From info and rheum. it seems that this would be far too much to reduce by at once.

Even though our bodies produce the drug, I think you have to reduce by even smaller amounts under 5mgm. Possibly 1/2mgm every 4 weeks.

Anecdotely, I have heard that those who do it slower have less chance of flare-ups. good luck and would love to hear how you are going zali

I get puffy eyes when I am having a flare up of pain- esp headache- you can see it in my eyes.

I wonder if your salt intake may have something to do with the puffiness??

Looking forward to seeing what I really look like after 1 1/2 years on prednisone. Am slowly tapering off. Fatigue is my worst symptom.

Anybody read the Scharzbein Principle? It talks about 'burned out adrenal glands' and how to help them recover. Written by an endocrinologist from Santa Barbara.

Have a good weekend all!

Karen

I'm taking 5 mgs. of pred so if I go down 1/2 every 4 weeks, I'd be finished by Christmas???Can this be true. Oh this stuff is so hard to get off of, but thanks for the encouragement, and all the suggestions for dropping it. Geeze who would have thought it would be this hard.

Sarah

Zali....on your suggestion, I will go down to 2mgs for a couple weeks and then down to 1. That will take me up to being done a couple days before my visit to the rheumatologist. Thank you for your concern. I am more tired than usual. I pried myself out of bed this morning about 8:30 and at 11:30 was so tired I had a two hour nap. So best be careful what I am doing. MaryDear Starbright,
The fatigue was absolutely getting to me too. So rheum did blood test for Vit B 12 deficiency, and about 4 other tests, but I do not have the form here, to know. Anyway they were all OK.
So I insisted that we lower the methotrexate, and decided to go from 30mgm to 25mgm IMI.
I have been on this dose now for 5 weeks while have remained on 4 1/2 mgm prednisilone for at least 6 weeks.
The fatigue is much less lately, but I think our bodies with PMR require quiet time mentally and physically. When people told me this early on , Iwould answer, oh I do not do much!

I also think the PMR hangs around for its allotted time, but the flare -ups really need to be treated with prednisone. But perhaps they are worse as we push ourselves to maintain a little normality.

We are all similar, but all so different ,with other health issues on top of the PMR, so I think we have to really think of our health as a total package and not blame PMR for all of it. I wrote "feeling good" in a previous post.
I am not quite as good as that now.
I improved out of sight, after a 4 day visit to my sister who lives looking out to sea; I did not attend my usual swim squads or yoga classes for 3 weeks or walk my dogs much or visit my mum as regularly as usual. It was really a quieter time of life, and decreased responsibilities and i think my body reacted so well. But how long can we go on stepping out of normal daily activities.

If you can not contact your dr before your appointment, think about whether the fatigue is actually related to a flare-up, and it may not be wise to continue to decrease medication.
We pay the drs. tell them how bad you are. Hugs zali

Zali, I do much better when I am able to sit around and not do much of anything. Unfortunately, that doesn't happen real often.

Karen,

Gee, you got me thinking, I wonder if the decrease in pred causes more puffiness. I notice that 1 week into each taper, I get some mild symptoms for apprx 7 days. I get sinus/allergy mild headaches, I feel it around my eyes.....and I was not an allergy sufferer. I do watch my salt intake, never eat canned or processed foods, and don't add salt to my food....a big change for me...before PMR, I loved salt.

I agree, Betsy, it's hard to sit around and do nothing. And sometimes how do we know if we have done "too much" until we have done "too much". We are fortunate that this "annoyance" will go away! We have to hold onto that!

I live in Northern Calif., it's a beautiful day, so I am taking my adorable yellow lab for her walk....

Everyone, enjoy your weekend.

Janet

Maybe I did get so tired because the day before I tore around too much. Went out to lunch with friends, then stopped on an errand. Then went out to coffee with another group and then another errand. Made it home by 5:00 p.m. I wasn't physically using my body, but it still my body might not have liked being so alert at all times. I don't know if mental alertness or physical exercise would be the same for PMR.

Usually I am no so busy....mainly because I don't have the energy. I never have had as much energy as other people. I think it has a lot to do with my thyroid. And, now with PMR running rampart too, it just did me in.

I am trying to get off the prednisone and Methotrexate too. Last Tuesday, I took only six of the Methotreate tabs. The Rumy schedule she had written down is to decrease prednisone so that I will be off of it a few days before the appointment. She said then, we will look into reducing the Methotrexate. I am probably being too overly anxious in doing it a bit more by myself.

I am not really up and at 'em today either. I do need to go and get some groceries, and maybe when I do get moving a bit more I will be better too. I realized a long time ago, with my thyroid condition, I need to get up and "get my blood moving." I wonder what this whole thing is doing to my thyroid. Maybe it is kicking it way out of whack too.

My little Pomeranian, Molly Anna, and I go walking about a mile every day or every other day. Today it is raining, so we won't be doing that.

I would love to go visit your sister by the sea too...sounds like a delightful place. :-) Mary

Dear Starbright,
Your name is just lovely and I wish you had more starbright days. I have found that even being out for the coffee and the chat and the errands can do you in on bad days. But a little exercise seems to get the blood moving, as you say and help with the spirit being lifted better than a sit around and the ???stress of errands and shopping and all that goes with it.

Interestingly, I am also on thryroxin. I am 56, went through menopause about 50, and thought 'wacky doo' here I come. Then PMR hit at 55.

But the rheumy , at my first visit, saw that my cholesterol had gone up, and said that was a sign that my thyroid was giving up. He did the test, I started on thyroxin Jan 06, I thought it would cure me, but as far as I am concerned it made no difference. But my thyroid tests that he does have improved. So that is why I feel that an approach to your whole body is important. Maybe I would be much worse now if he had not monitored my thyroid.

As I have had high blood pressure and been on medication since my 30's I see a cardiologist every 2-3 yrs. He saw my cholesterol was raised june 05, and wanted me to start on anti- cholesterol meds, but I said no, give me 6 mths to get it down. Then came PMR, and the rheum, who at least , did not have tunnel vision.

hugs Zali
zali39207.8682175926 Starbright - you said in your post

"I am trying to get off the prednisone and Methotrexate too. Last Tuesday, I took only six of the Methotreate tabs. The Rumy schedule she had written down is to decrease prednisone so that I will be off of it a few days before the appointment. She said then, we will look into reducing the Methotrexate. I am probably being too overly anxious in doing it a bit more by myself".

Hi Starbright, probably not a good idea to reduce the MTX if you are reducing PRED at the same time. I would stick to the schedule you were given, and would strongly urge you to check that out with your Rheum.

I'd rather you didn't mess up your Prednisone reduction schedule, if it's going OK, and I think it's more important to get that one out of the way first if you can. It can be a very difficult drug to get off, especially when you're getting right down in the lower doses. This is where your Methotrexate will help.

Please anybody, correct me if I'm wrong - I would hate to put you on the wrong track Starbright, but if you are doubtful, best to give your Rh. a phone call! I would hate you to have more pain when you don't need to!!

Hey everyone

By reading the posts, I see a lot of you are taking methotrexate with your pred. Wow, I'm just on pred and would not want to go on mex. My hubby is on that with Enbrel. He has started to lose his hair. Kind of upset him. Am i wrong in saying all these meds effect your liver among other things? There is so much side effects to these pills. It is really scary. Are any of you seeing any effects with this disease and or the pred that could cause your eyes to start changing. It seems as if none of my glasses fit me anymore. Yes, I'm starting to decrease on my pred. I take it every other day. I'm down to 30mgs one week and 40 mgs the next. Will stay on that for a while (couple of weeks) and continue to decrease. Ok what happens, what are the side effects when you go down to fast? Does the pain increase or does some other part of your body object? Would appreciate any info.

Thanks, and hope you guys all get better.

Anna

Anna,

I take only prednisone, so cannot address the methotrexate issue.

As far as prednisone, my routine was 15 mg for 2 mos; 12 mg for 2 mos; 10 mg for 2 mos, then taper by 1 mg every month. I am finally down to 5 mg. My eyes drove me nuts at different times. I have been told that pred can improve near vision,(in my case it did not) however, the prednisone changed my distance vision, and sometimes my vision gets blurry. I did not normally wear glasses for everyday "seeing" and driving, but found myself using them more. I did get a new prescription and needed more reading power.

I have been told time and time again not to decrease too fast on prednisone. Another poster has said, "slow and steady wins the race". I believe that. The rheum doc and my primary doc said that decreasing too fast can lead to "upping the prednisone and starting the process all over again" I am not a patient person, in fact, I am very impatient. Just remember this stuff goes away. As I mentioned to my rheum doc that there are worse things to have.............he really agreed, as he sees so many other delibilitating and progressive diseases.

Keep as posted as to your progress.

Janet

Anna,

Now that you mention it, yes prednisone can affect your vision. I had to get my prescription changed halfway through the course of prednisone (not by very much though, but the problem was bothering me enough to get a change). However, when I cam off the prednisone my vision improved a lot, especially my distance vision. I really don't need glasses for distance vision any more. Yay! Kind of a hassle having to pay to get the glasses changed so often, though.

Reni

I had very strange vision problems a few weeks after I started prednisone last year. I'm very myopic (-9 approx) and would start out the day fine with my regular pair of glasses, but by the end of the work day I couldn't see well enough to be legally driving! Fortunately, I had kept my two previous pairs of glasses (stronger prescription) and just kept all 3 pairs with me so I could change them when necessary. I did all kinds of googling to see if I could find an answer, ended up getting onto a "vision" board where some very knowledgeable people suggested it could be a blood sugar thing, although my MD had me do a fasting blood glucose test & was satisfied I wasn't diabetic. Something to do with the viscosity of the fluid in the eye changing the shape of the cornea???

More googling, and I came across a study about "corticosteroid induced diabetes and supplemental chromium picolinate". It appears that prednisone depletes chromium from your system, and insulin requires chromium to do its job of regulating blood sugar levels. Chromium picolinate is the most bio-available, and should be taken with biotin. So I started taking 500 mcg of chromium picolinate and about 250 mcg of biotin every day and my "fluctuating" vision problem cleared up immediately.

Since it helps to regulate blood sugar, it would probably also help reduce those sugar cravings and the hungry feeling that makes you eat more on prednisone. I've been on it for 14 months now and haven't gained any appreciable weight (I always put on a couple of pounds over the winter, but lose it when I get more active in the spring). I'm still wearing pre-PMR blue jeans.

BTW, I'm having some great days lately, even though I'm still on 11 mg. of prednisone. Enjoying the long days and spring weather, very busy on the farm, doing lots of heavy work, riding my big black mare, having to remind myself every now and then that I actually do have PMR. I hope everyone else is enjoying the spring (except the Aussies!) now, too.

ok....I will follow everyone's suggestions and follow the schedule the rheumatologist gave me. I am on the lower end of prednisone and evidently a very serious time for getting off of it. I did not know that until reading your messages. I just thought I would get off of it and have a little pain and could live with it. Evidently not, it will come back full force and I would have to start all over again.

I had a liver test last week, and evidently they didn't like what they saw because they want it taken again in two weeks. I don't know if it has raised because of the prednisone or the methotrexate. I also had an eye test and I had high occular pressure. I have had glaucoma for 20 years, so that is the part that worries me about prednisone.

My left eye was elevated to 22 even with the medication and the right eye was 14. I suppose when I started taking it, the numbers were even higher. Last week, the left eye was 17 and the right eye was 14 and the eye doctor said to come back in July with my regular time checkup.

I can see though that with decreasing the prednisone, I have twinges of where I hurt before warning me that it could return.

I really appreciate your genuine concern and will take your advise since it seems you all are going through this and know the side affects of what can happen. Hugs to all of you....Mary

""So I started taking 500 mcg of chromium picolinate and about 250 mcg of biotin every day and my "fluctuating" vision problem cleared up immediately.""

Tickety...I bought some Chromium Picolinate, but there was no biotin anywhere on the shelves. Where do you find that. Or do they have a bottle that has it with the chromium? Mary