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.

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

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.

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.

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

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

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.

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.

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.

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.