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barbararene

Poly myalgia rheumatica

Posted by @barbararene in Autoimmune Diseases, Mon, Feb 13 at 7:17pm CDT

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

johnbishop

Posted by @johnbishop, Mon, Feb 13 at 8:16pm CDT

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I'm now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn't want it to get out of hand. I don't use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that's how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

kanaazpereira

Posted by @kanaazpereira, Mon, Feb 13 at 9:46pm CDT

Hello @barbararene,

I'd like to add my welcome to @johnbishop's who has shared some valuable experience; thank you John.
I'd also like to request @amkaloha, @jasonkwellls, @charlena, @bethog28, @sallyann, @nancestl, @sherw, @julied838, @madge, @cyndee, @selrahc, @Robert43DAP, @jchatchett, @maxmaximus3, to share their insight with you.

You may also be interested in reading this discussion - Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? http://mayocl.in/2c0mXSO

@barbararene, how do you manage your PMR beyond your medications?

barbararene

Posted by @barbararene, Thu, Feb 16 at 6:56pm CDT

Thanks John
It's rare to find too many diagnosed w pmr.
I'm on 5mg a month,then decreAse every month until 0.
Didn't work before.
Am trying again .

charlena

Posted by @charlena, Fri, Feb 17 at 5:28am CDT

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

barbararene

Posted by @barbararene, Fri, Feb 17 at 6:15am CDT

Let me share my story. I am 58 yrs old. I have always been really active by walking, biking, hiking, etc. February 2016 I started having some stiffness. I thought maybe it was stress related. Then it became worse and I had pain in my upper arms, thighs, neck, and buttock muscles. I couldn't get an answer from a physician. They kept trying to dose me w rheumatoid arthritis.
I was on vacation in June and I met a lady who was describing her symtoms to me. She had just been diagnosed w PMR. Her symptoms were exactly the same as mine. I went back to my Dr and told her I believed I had PMR (I understand it's hard to diagnose). She did some blood tests, found my inflammation factors to be high and the determining factor to diagnose was, immediately when I started taking the predisone, I felt completely healed. That was on 10mg. I read up on side effects of predisone and I don't want to take the medication, but find that I can't move wo it. I am now on 5 mg. I still have some pain and stiffness, but it is manageable. The dr wanted to put me on methaltrexate and I refused. It has been a year now. I find that stretching, even though it is painful and going for short walks helps. Some days I feel normal, but most days it is evident I have this stiffness. (I have named it the FRANKENSTEIN DISEASE)! I still get up and work every day until noon, and I try to get a couple of hours of rest each day. I am more tired than I use to be. I have read others stories that talk about people going into remission, so I am praying for that.
Barbara Rene'

charlena

Posted by @charlena, Fri, Feb 17 at 7:22am CDT

Thank you, Barbara, for sharing your story. It always helps to know what symptoms others diagnosed with polymyalgia have. My husband's symptoms are very similar to yours. His rheumatologist has only prescribed the prednisone. He would like to be able to bee off of it for periods of time, but when he decreases the doseage he can tell a HUGE difference within hours. He works every day 8-9 hours and is on his feet 99% of the time. He rarely complains but when he does I know he is in a lot of pain.
Charlena

barbararene

Posted by @barbararene, Tue, Feb 21 at 8:41pm CDT

We have to stay in touch and share what each of us finds that helps.
My goal is to keep moving, even when it's difficult!

charlena

Posted by @charlena, Wed, Feb 22 at 6:11am CDT

I am so happy that this forum is here! It always helps to meet and talk with others whose input is so valuable.
My husband works every day, I just wish I could get him to exercise more. He almost never complains, therefore when he
does complain, I know he is in terrible pain.

johnbishop

Posted by @johnbishop, Wed, Feb 22 at 9:47am CDT

Exercise is one of the keys to PMR. I hated doing it but once you get into a routine and find one that is not too difficult or that causes more pain it's not too bad. I bought a recumbent bike, elliptical combination and use it for 30 minutes when I first get up 5 to 6 days a week and then a few times a week I use it in the evenings for 30 minutes while watching the news. It's easy for those that have trouble or don't like walking because it has a larger seat and pedals so doesn't cause joint pain. I also started using a therapy band to see if I can regain some strength in my hands, arms and shoulders.

Keep working on him to exercise!

John

charlena

Posted by @charlena, Wed, Feb 22 at 10:29am CDT

Thanks, John, for the great info! I use a Pilates chair which can be used for several exercises. He has used this a few times. We also have therapy bands which I will try to get him to use- great idea!

johnbishop

Posted by @johnbishop, Fri, Feb 17 at 6:49am CDT

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I'm a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I'm having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck - your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

charlena

Posted by @charlena, Fri, Feb 17 at 7:16am CDT

Thank you, John, for describing your symptoms. My husband does see a rheumatologist. Actually, he saw 3 other rheumatologists (all in Chattanooga, TN) before this one and none of them diagnosed anything. One even advised that on the second visit he would definitely have answers, then at the appointment said he had no idea...... This is why we see doctors at Emory and Vanderbilt, who have all been great! Just wish the rheumatologist would expand his mind..... Wish a Mayo clinic was nearer to us.

barbararene

Posted by @barbararene, Fri, Feb 24 at 9:29am CDT

It seems like almost all of my intense pain has moved to my feet. It is especially on the sides of my feet and some on the bottoms of my feet. Still have pain in shoulders and arms, but it's like it has moved to my feet more. I am on 4 mg of predisone. I sure hate to increase the dose but don't know about this. Any thoughts?

johnbishop

Posted by @johnbishop, Fri, Feb 24 at 12:13pm CDT

Hello @barbararene - you are right, PMR is the Frankenstein disease. I've had the old man walk since my early 50s in the morning until my stiffness gets better. I think it's not uncommon for PMR to start in hands, arms, & shoulders and show up later in the feet. I would contact your doctor or rheumatologist to discuss bumping up the prednisone a little. It also sounds like it could be a form of peripheral neuropathy which normally starts in the hands and feet. I don't believe prednisone will help with PN - I know it does nothing for my small fiber peripheral neuropathy but I only have the numbness/tingling and not any pain.

4 mg prednisone is a very low dosage. My rheumatologist started me on 20 mg in Jan 2007. I was able to taper down the dosage and get off of the prednisone in 2010 when my PMR went into remission.

Let us know when you find out anything.

John

amkaloha

Posted by @amkaloha, Fri, Feb 17 at 9:26am CDT

Hi Barbararene,
I have been meaning to write for a few days and finally have a few moments to myself! I was diagnosed with PMR on March 4, 2015 by my primary care doctor who is a D.O. and very much into natural healing as opposed to drugs. I remember when she said it, it looked like she had an epiphany! I guess she put it all together--my high inflammation markers and terrible pain across my shoulders and in my arms that wouldn't go away. I was already on Tramadol but that did not help this. She said the standard drug for PMR is prednisone but she did not want to put me on it because of my higher glucose level. Most often it was near 120 and I was not on any medication, just controlled it with diet, so she didn't want it to go higher or for me to have to take a drug.

There is a whole story as to how I came to the following, but I'll spare you the details and just tell you that we found that methylprednisolone did not raise glucose levels as much as regular prednisone. So, after she tried me on Methotrexate (the 'other' drug of choice) and I got so sick on just one dose of it, she put me on the methylprednisolone 4 mg. I have been on this dosage from the beginning and have tried a few times to go lower by taking 1/2 pill one day then the whole pill for a few days, etc. I could never get to a lower dosage without my pain coming back. In fact, at the 4 mg dosage I still have a little pain in my arms especially when I get up in the morning and sometimes in the late afternoon but I'm not into raising the dosage.

I was wondering if anyone on here could tell me how long it has taken for them to go into remission. I know everyone is different, but I guess I'd like to know if there is some light at the end of this tunnel??? And, Barbara, I'm with you, I drink some wine also but have been thinking of giving it up to see if that helps.

barbararene

Posted by @barbararene, Tue, Feb 21 at 8:38pm CDT

Glad to hear back from you. I'm encouraged when I hear that people actually go into remission. Hoping that's our case. I'm on 4mg predisone now. Still have stiffness and pain but manageable. I hear all kinds of advise, from diet to exercise to acupuncture. I'm a pretty healthy eater and I make myself walk 30 minutes a day.
I'm in Texas and the weather is usually great for walking.
Whet a mystery this illness is.! Keep in touch.
Barbara Rene

barbararene

Posted by @barbararene, Fri, Feb 24 at 9:53am CDT

I am taking the 4 mg of predisone and yes I am having pain in my arms and shoulders and especially my feet now. This is the strangest illness ever!!! I'm like you as far as I have always been anti medication and wanted to do it all natural. Unfortunately the predisone is the only thing that works. I am going to see a physical therapist on Tuesday who I am told specializes in PMR. I will let you know what I think about it. I can't imagine he would have anything to offer me, but will see. Getting in the Hot Tub gives me some relief, but I can't imagine all that heat would be good for inflammation. Your thoughts? And remission seems like will it ever happen.

johnbishop

Posted by @johnbishop, Fri, Feb 24 at 1:06pm CDT

Hi Barbara Rene' (@barbararene) - Think happy thoughts about PMR going into remission. My first occurance was in 2007 and it took my several years to get off of prednisone which was in July 2010. It went into remission and didn't rear it's ugly head until last August. So, I'm hoping it doesn't take me 3 years to get off prednisone and that it goes into remission forever. I've been focusing on eating a more healthy diet and have incorporated the nasty green smoothie for breakfast 4 to 5 times a week. I do know that diet and nutrition play a significant part in autoimmune illnesses. I started on my path after finding and reading The Wahls Protocol book by Dr. Terry Wahls. She has an amazing story of how she was able to significantly improve the symptoms of her MS - http://terrywahls.com/about/about-terry-wahls/. I thought it was just another diet book until I read a little more about her.

Here's hoping for happy thoughts that your PMR will go into remission very soon!

John

amkaloha

Posted by @amkaloha, Fri, Feb 24 at 6:14pm CDT

Are all of you saying that after you go into remission you still can't get off prednisone? Also, when would you know you are in remission?

johnbishop

Posted by @johnbishop, Fri, Feb 24 at 9:05pm CDT

Hello @amkaloha - having PMR going into remission just means that all of the symptoms go away and you no longer need to take prednisone or whatever other medication was prescribed. Not sure why it goes away but I had the symptoms pain and stiffness in my shoulders, arms and hands for 3 years and then over that period kept tapering the dosage of prednisone until I no longer needed it - all under the doctors supervision.

amkaloha

Posted by @amkaloha, Sun, Feb 26 at 9:11am CDT

Thanks for the reply. I'm wondering when you know you should start tapering off the prednisone. I have been on 4 mg since June 2015. I have tried taking half a pill but have pain and resort to going back to the whole pill again. If you still feel pain when you cut down, does that mean you are not in remission? Or are there other indicators? And should you suffer through some pain when you taper down? I'd really like to get off this prednisone.

johnbishop

Posted by @johnbishop, Sun, Feb 26 at 12:24pm CDT

You mentioned that you were on 4 mg dosage or prednisone and when you try taking a half of a pill (2 mg?) that the pain is back. Is this correct? If this is the case, I would talk with your doctor to see if they can write a prescription for the 1 mg prednisone. It may be more expensive but it's easier split the 1 mg tablet then you have a 1/2 mg dosage so could go from 4 mg down to 3-1/2 mg. I would tell your doctor you are having difficulty tapering the dosage and ask if they have any suggestions on a titration schedule. My Mayo rheumatologist helped me when I was having difficulty. It's something you just have to keep working on. Also, are you able to do any hand, shoulder, arm exercises? They really will help even if you have a little pain.

Hoping for some relief for you and that you will be able to taper off of prednisone.

John

barbararene

Posted by @barbararene, Mon, Feb 27 at 8:43am CDT

Getting off of the prednisone is difficult. I agree w John, that you have to do what works for you and be your own advocate. I went back to my rheumatologist and said I have to go back up on the prednisone bc I can hardly move. She wants me off of it, but it evidently is not the right time. I talked w an older physician that I work with and he said not to worry about the side effects when you are at a lower dose of 5 mg, that there should be few side effects at that dose. I really should go back up from 5 to 7mg, but I like you just want off of this stuff. I am surprised that I have less pain in my shoulders and arms and hips, (I say less pain, not no pain).
Most of my pain has now moved to my feet. Especially the sides of my feet, makes it difficult to walk, but I go to work for 1/2 a day every day. I say, we all have to keep moving, and I agree w John that we have to find the exercise we can to help w the stiffness.
Ugh. This is terrible stuff! Prayers, Exercise, and being positive. We got to do it!!!!

jchatchett

Posted by @jchatchett, Sat, Feb 25 at 9:04pm CDT

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I'm on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can't hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

johnbishop

Posted by @johnbishop, Sat, Feb 25 at 10:08pm CDT

Hello @jchatchett, I'm so sorry to hear about the side effects and the pain. I know it can seem overwhelming at times. I see you mentioned you are at 9 mg dosage and go down every 4 weeks. Did your doctor give any instructions about if the pain gets bad again to go to the previous dosage? I would talk with the doctor about the pain. My first occurrence of PMR I was put on 20 mg and after awhile he gave me a schedule to try tapering off of prednisone. He also told me it would be difficult and it was. It took me 3 years before the pain went away enough I didn't need the prednisone. The last of those three years was bouncing back and forth between 1 mg to 1/2 mg dosage until I finally stopped taking the 1/2 mg dosage and the pain was gone.

Have you told your doctor about the side effects you are experiencing? My rheumatologist told me that PMR was the arthritis everywhere disease. I'm guessing that was the easiest way for him to explain it at the time. There is a lot of information that describes it along with symptoms, treatments, etc..

Mayo Clinic has some information here - http://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/basics/definition/con-20023162.

NIH page has some good information also - https://www.niams.nih.gov/health_Info/Polymyalgia/default.asp

Hoping you can find some relief for your pain.

John

amkaloha

Posted by @amkaloha, Sun, Feb 26 at 9:31am CDT

jchatchett, have you checked out other things that might be causing what you feel are side effects of prednisone? E.g. hair falling out can be an indicator of hypothyroidism often missed by MDs Also, magnesium helps leg cramps and a-fib, but you need a liquid kind like Re-Mag so that your body can absorb it. You can read more about liquid magnesium on Dr Carolyn Dean's website if you are interested. I know exactly what you are going through, as I also pray for remission and stopping the dreaded prednisone. Good luck to you.

peck1944

Posted by @peck1944, Sun, Feb 26 at 11:25pm CDT

I had PMR and was on prednisone for 18 months. The side effects were terrible, especially the weight gain. I did not experience any difficulty tampering off. I started at 20 mg and went down to 2 mg. Fortunately I have been in remission for over 3 years. Please check with your physician after tapering off. You may not be ready. I do recall the the awful pain before I started on prednisone.

aggie333

Posted by @aggie333, Mon, Feb 27 at 10:35pm CDT

@jhatch1. This is a suggestion for you. Both myself and my sister-in-law had been diagnosed with PMR year 2013.
I personally had it for almost three years. It' an autoimmune disease caused by inflamation somewhere in the body which
Doctors can only tell by a high CBC or a high sedimentation No. Mine was 14 at the time. But here's the the part I want you to know.
In checking with a neurosurgeon for back pain It was discovered that we both had stenosis of the cervical neck and we both had
Surgery. Arthritis and Spurs were squeezing the spinal cord causing all the symtoms you describe. I now have no general body
Pain but I still have my back pain because of a separated SI joint for which I need more Surgery. That won't be until I feel my neck
Is completely healed which will take time and more therapy. You would need to see a very good Brain and Spine Neurosurgeon!
For X-rays to be sure this is not your problem. I feel since this was two of us PMR may be a misdiagnosis. Worth a try!
Feel better. From Daisybud12. PS. Joan lives in Reading, Pa I live in No. Florida

charlena

Posted by @charlena, Tue, Feb 28 at 5:17am CDT

This is most interesting. My husband had a neck injury many years ago. It might be worth checking into as his rheumatologist is not 100% sure on the PRM.....

johnbishop

Posted by @johnbishop, Mon, Feb 27 at 1:27pm CDT

I do the hand exercises from Mayo link below and some of the things from the second link. I have trouble finding time to walk so I have recumbent exercise bike with large seat and pedals (it's a recumbent bike, elliptical combination - I just don't use the elliptical part). I use it 4 to 5 times a week for 30 minutes at a time when I first get up. I find doing it first thing helps with the stiffness.

Here are some easy to do hand exercises for people with arthritis that I think also help for those of us with PMR;

http://mayocl.in/2lYSXKu

Here are some exercises for people with PMR - I would just try to find something that is easy for you to do. Lot's of recommendations and choices here.

http://bit.ly/2m3zCIL

One day at a time, one step at a time ☺

John

rinron

Posted by @rinron, Mon, Mar 13 at 5:12pm CDT

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He's gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it--skin is so very thin he bleeds at the slightest touch! It's become a joke in our family--I'll just buy all new towels and sheets when he's through the tunnel; don't go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

amkaloha

Posted by @amkaloha, Mon, Mar 13 at 7:12pm CDT

Yes, weight gain is the worst for me. I feel like i just can't get out of my own way! And I've developed lymphodedema which may or may not be due to the prednisone. I know swelling is one of the effects, so why not lymphodema? I also have fluid buildup on the retina of my left eye. Wondering if this is due to the same thing????? Not a good drug! I take 4 mg a day and want so badly to lower that.

johnbishop

Posted by @johnbishop, Mon, Mar 13 at 9:10pm CDT

Hello @amkaloha, so sorry for your struggles with the drug. Have you been able to talk with your doctor about the possible side effects or if there is an alternative drug or treatment? I would ask the doctor if it's possible to taper the prednisone to try and get off of it.

Hoping you find some answers...

John

charlena

Posted by @charlena, Tue, Mar 14 at 5:52am CDT

My husband is on 5 mg of prednisone daily. His skin also is so thin that he bleeds with the slightest touch and oh, the bruising! Regarding temperament- he is a very easy going, mild mannered person, but I noticed a difference in his temperament about 2 weeks after he started taking the prednisone. He developed a short temper and became somewhat hateful, both characteristics he has never had. When I told his rheumatologist about this, he said he couldn't believe my husband could be affected in that short period of time. He has been on the prednisone going on three years. He has not experienced any weight gain. He also has had vein bleeds due to his thin skin and, I must say, that is scary the first time it happens.
Thank you to everyone who shares their experiences with PMR and prednisone. It is always helpful.

guener

Posted by @guener, Tue, Mar 14 at 7:40am CDT

I have fortunately not been on Prednisone for a long time (thanks to other drugs I take for my Crohn's Disease). When I was taking Prednisone I was on a fairly high dose for an extended period of time. During those months I had an appetite that would not stop, insomnia, mood swings and hot flashes. Tapering down was difficult and at times painful. The biggest side effect I had was avascular necrosis, stop of blood flow in my hip, that caused enough damage that I had a bone graft and eventually, recently, a full hip replacement. I don't recall if my skin got thinner at the time or not, but I was in my 30's when taking the drug. It's a very powerful and wondrous drug, but the side effects are usually a problem over time.

bertbiz

Posted by @bertbiz, Tue, Mar 14 at 8:14am CDT

Hi Rinron,
I was on Prednisone for 2 1/2 months for MP. I didn't have many side effects while I was on it. But as I was tapering off of it, my hair started to come out in clumps. I never had bald spots, but a lot of hair loss. I can only be grateful I have a lot of hair to begin with. It took almost 6 months for my hair to come back.

I wish you all good things.

Bertbiz

angelard

Posted by @angelard, Tue, Mar 14 at 9:18am CDT

Hi,
I can imagine the damage it does to the bones when, in your case you were young when taking it.
I am 65 now and have been offered cortisone injection to my hip when the pain is unbearable then hip replacement.
(Been on it since Sept 2015 and still cannot get rid of it).
May I know where did they do the bone graft? around the hip? What did your doctor go by when they told you hip replacement was necessary??
My MRI did confirm oesteonecrosis of the hip but the pain is at the femur usually....I am at 10mg now and dreading tapering as I had the tapering course before and I honestly move and walk like a cripple!
I also have painful tendonitis of one shoulder - not sure if related to platelet being up and down or the prednisone. Have been told this prob last from 6 mos to a year. Dont want to rely on Tylenol all the time as pain relief so thinking about asking for medical marijuana.
A

guener

Posted by @guener, Tue, Mar 14 at 9:27am CDT

I had a free vascularized fibular graft done at Duke University back in 2001, so that lasted me 15 years before the hip replacement at age 51 when x-ray's showed that the hip osteoarthritis was at a point for replacement. I could not be happier with my new hip: it works perfectly and there is no more pain at all.

rinron

Posted by @rinron, Thu, Mar 16 at 5:50pm CDT

Amkaloha. See your Optometrist immediately. Advice by my primary and my rheumatoligst gave warning about any eye problem
My primary doc. called me while on a fishing trip to come back right away to see my optometrist. Good luck Brother, Ron.

amkaloha

Posted by @amkaloha, Thu, Mar 16 at 6:48pm CDT

I am seeing a Retina Specialist who diagnosed my fluid on the retina. I asked him about the coincidence of the lymphodema and the fluid on my eye. He said he'd think about that if it were in both eyes. Mine is just in the left eye. Thanks for the reply.

rinron

Posted by @rinron, Thu, Mar 16 at 8:26pm CDT

Thanks Charlena for your reply. We definitely share similarities in our husbands. I failed to mention the bruising; oh my gosh! And, our rheumatologist confirmed my suspicions that Prednisone can cause dramatic personality and temperament changes. My husband recently went from 4 mg to 3mg and has not experienced the return of any pain 🙂 He started the Prednisone about 2 yrs. ago. We understand that the PMR can go into remission but, like others here, can likely return. It was good to hear from someone else who shares our issues.

johnbishop

Posted by @johnbishop, Mon, Mar 13 at 6:30pm CDT

Hello @rinron, when I was first diagnosed with PMR and was put on prednisone for about 3 years before I was able to taper off, my main side effect was weight gain and fluid retention. My PMR went into remission for about 6 years and came back August of last year so I was back on 20 mg prednisone. I have been able to taper down to 10 mg but am struggling a bit to go below that. Knowing what my side effects were the first go around has given me extra incentive to work on not gaining more weight and trying to exercise a little more.

Mayo Clinic has some information on the major, minor and unknown possible side affects here:

http://www.mayoclinic.org/steroids/art-20045692?pg=2

Drugs.com also has a comprehensive list of side effects here:

https://www.drugs.com/sfx/prednisone-side-effects.html

Hopefully others will share their common side effects.

John

rinron

Posted by @rinron, Mon, Mar 13 at 6:43pm CDT

Thanks John.  That's funny. . .side effects have got to be so different for each individual.  Ron has not gained any weight nor the fluid retention.  I hope others will share their experiences because the effect I wrote about are "killing us". . .

johnbishop

Posted by @johnbishop, Mon, Mar 13 at 6:55pm CDT

I have experienced the thin skin and easy bruising but wasn't sure it was a side effect of prednisone. I do wear socks to bed after an exciting ride to the ER from rubbing my feet together and nicking a vein close to the surface of the skin. Good thing I woke for my old man trip to the bathroom which is when I noticed blood all over the floor while I'm turning in circles to see where it's coming from. I didn't feel anything due to the neuropathy in both legs and feet. It is funny looking back on it but wasn't funny when it happened. I had attributed it to what I "believe" caused my small fiber peripheral neuropathy - many years in my 40s and 50s taking lisinopril for high blood pressure.

kanaazpereira

Posted by @kanaazpereira, Mon, Mar 13 at 10:56pm CDT

Hi @rinron,

Many Connect members have discussed Prednisone, so I'd like to tag a few, and hope they will join this discussion with more information for you.
@angelard @lemdjm @twinskl @jrt26 @mmontgomery008 @jewel8888 @chicagomichelle @blindeyepug @crhp194 @dsisko @freemary @bboxer @jay_baruch @bertbiz @momij @vdouglas @ajgray @coastalgirl, would you share your thoughts about Prednisone and its side effects?

As always, thank you @johnbishop for sharing much of your insightful experience; @rinron, you may also be interested in this discussion on Connect:
Vitamin B12 Shots: http://mayocl.in/2nyFiYf

jrt26

Posted by @jrt26, Tue, Mar 14 at 12:05am CDT

So far the side effects I've experienced is weight gain (15 lbs) and I may have glaucoma. I am waiting for an appointment with a specialist since my regular eye doctor noticed increased pressure (24-25) in both eyes and more on the left. I started on prednisone 60mg daily and taper down for 8 weeks then restarted after a week due to return of symptoms at 10mg daily for over a month and taper down by next week.

angelard

Posted by @angelard, Tue, Mar 14 at 4:44am CDT

HiRe side effects from prednisone I have been on this wonderful (it saved my life) but toxic drug since sept 2015.Most of time I was on equivalent of 1mg/kg weight.To me the two most horrible  & irreversible side effects are osteo necrosis & ? Cataract - not to mention being hyper &/or low energy & depression during tapering. I am fearful of needing a hip replacement prematurely.I have not needed insulin while on prednisone. I think I achieve this by checking my blood sugar several times a day and walk or eat accordingly (a half hour speed walk can half blood sugar!) I eliminate simple sugar or juices from diet and don't over eat.  I have been able to maintain my weight.Hope this helps!A

crhp194

Posted by @crhp194, Wed, Mar 15 at 6:28pm CDT

I have been on prednisone for 7 months, started at 40mgs, now down to 7mg. Gained weight at first as I could have eaten whole pies, cakes etc. Now am not gaining but find it hard to lose. I keep involved in my hobbies (I am 73) and keep involved with friends. I suppose I have had other side effects but keeping busy doesn't allow me time to think about them. I am just happy to be alive after open heart surgery and giant cell arteritis. Each person is different, however, and I feel so sorry for the ones that have bad side effects. Best to all of you-at least we are still here.

momij

Posted by @momij, Tue, Mar 14 at 12:27am CDT

I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved my life. I was on high doses to begin with and then tapered down. The prednisone put my minimal change disease in remission... then I started weaning off and began having excruciating pain all over - I believed it to be from the prednisone withdrawal.... then I had a relapse of my kidney disease, again helped by higher doses of prednisone... then began to wean again... and then the pain again... ended up working with endocrinology to change over to hydrocortisone and taper that VERY slowly as I had been on the prednisone long enough to now have secondary adrenal insufficiency. I was exhausted and still in pain after that. I was diagnosed then with spondylitis and take 5 mg daily to help keep that and my kidney disease at bay. I hate taking it but every time I taper below 5 things get worse for me. At 5 mgs my side effects are not insignificant but are tolerable mostly - I have gained 65 lbs., have a puffy moon face and neck, thin sin, trouble sleeping, anxiety, bruising, irritability, am ravenous... at the higher doses I become much puffier, hungrier, angrier, anxious, sweat a lot, have really bad hot flashes. And though my bone density scans come back normal I have broken my ankle doing absolutely nothing and have had 2 teeth break off at the roots and needs implants.Good luck!

angelard

Posted by @angelard, Tue, Mar 14 at 5:29am CDT

May I ask how high was your dosage?

barbararene

Posted by @barbararene, Thu, Mar 16 at 9:36am CDT

I understand this tapering off. I seem to manage pretty well on 5b mg, but even when I go down to 4 1/2 mg, I can tell the difference. I know I need to get off of the prednisone, but I also have to be able to get up everyday and function. Very frustrating. Some days, I am almost free of pain and other days more pain. I use the scale of 1 to 10 for pain. Today I am at a 5 which is great. This last week-end it was about a 7.

angelard

Posted by @angelard, Thu, Mar 16 at 1:39pm CDT

My dr seems to have a different way of tapering: I am at 10mg now and last 2 or 3 weeks I have been on 10mg alternating with 15 mg/d.
I know the next order from her likely will be 10mg alternating with 5mg. But I am already noticing the profound tiredness and the achiness of the body. My dr has never ordered half mg during tapering.... but interesting concept.
I also go to naturopath clinic which gives me adrenal support during the tapering days. After I take the tincture, my body feels hot...
I dread this downward 'trip'...
A

barbararene

Posted by @barbararene, 4 days ago

I am now on 4 mg of prednisone. I am going to try this for a month, then try to go down to 3mg. I have not had any success in the past getting past 3 mg. (seems insane doesn't it). I think sometimes you have to figure out what works for you. I don't think my physician really knows what to do that is effective, so I am doing a little experimenting on my own. I was having a lot of pain in my feet, now it seems to be mostly in my upper arms (biceps). That is what is happening this wee, who knows about next week. I hope more studies are done to identify and cure this illness.
Keep moving people!

angelard

Posted by @angelard, 4 days ago

wow - sorry to hear you have such hard time even from 4 to 3mg (such low dose). I am currently on 10 and I doubt this dose is supporting or sustaining my platelet. Therefore I am thinking about asking tmy doctor to consider 10mg one day and 5 next day type of tapering...I am so fearful of this downward trip from past experience.
My tendonitis at shoulder is keeping me in throbing pain 24/7- I do take Tylenol but it is not an anti-inflammatory drug. ?Aleve is anti inflammatory but the pharmacist seems to think it (Aleve) may drag down platelet. I sure dont need that at this point.
I use LivRelieve and I use Voltaran and I use Traumeel gel (homeopathic). 2 days ago I got hold of a medicinal balm contarining 500mg THC in 30mL. The THC cream only tried once and I had an odd sensation from it so I stopped. (I never smoked marijuana.)
So far I feel all of the topical stuff only ease the pain very temporarily......
Bottomline is I am quite miserable....

barbararene

Posted by @barbararene, 4 days ago

I haven't thought of the the cream. Probably can't access that Bc I'm n Texas. Worth looking into. I'm a believer in medical marijuana.

barbararene

Posted by @barbararene, 4 days ago

I have found a cream online called deep blue rub. It is a little expensive but that's what I'm using

jchatchett

Posted by @jchatchett, Wed, Mar 15 at 4:51pm CDT

I started at 20 mg now I am at 9 mg.

barbararene

Posted by @barbararene, 4 days ago

I sure hope tapering works.ill b curious to see how you do once you get to 5. Go slow!!

johnbishop

Posted by @johnbishop, 2 days ago

Hi @rinron here is the message you shared with me that was meant for everyone in the group.

Hi Everyone. I want to thank all of you who responded to my call for help regarding my husband's particular side effects from Prednisone. Seems only a few of you had similar thin-skin issues and volatile temperaments. I read all of your posts outloud and he appreciated them. That being said, he is not one to sit at the computer and you wont be seeing him here. He's now down to 3 mg. with no discomforts. We still walk on eggshells :-).

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