GCA - now- PMR too

[grannma]

I have had GCA for three years this month. After being on 1 mg. for 2 months, my doctor reduced me to 1-0-1-0-1-0. I started having upper leg pain behind my knee. I saw him again and he said "well, go back to 1 mg. per day until you are better. Since then (2months later) I have neck pain, right arm pain and shoulder pain. Is it possible that I have developed PMR? May I have suggestions on what to do? Thanks so much! Here I thought " good-bye GCA and now something new?????

[PMRpro Ambassador]

PMR can actually be a symptom of GCA just you hadn't been low enough to notice it before - and it might be an idea to go back to 5mg for a few weeks and see if that is enough. But if it is just on one side - have you hurt the shoulder or your back?

[grannma in reply to PMRpro]

Thank you!!! I actually had TA found through biopsy. I don't remember shoulder, arm, but your observation could be "right on" ! Having taken such a high dosage of prednisone could have been hiding PMR! WoW! I appreciate your thoughts and will keep you posted on the outcome!

[DorsetLady PMRGCAuk volunteer]

Hi grannma,

Sorry to hear about your return of pain.

Do you have pain in both shoulders or just one? if one, same as arm? where is your neck pain? If all your pains are on both sides more likely to PMR, just one side could be all sorts of things, arthritis, general aging (sorry!)

It could just be coincidence, you have to remember that Pred takes away most pain of any sort, which obviously comes back when you reduce to very low doses. I must admit when I got to very low levels I always thought along similar lines to you, but I now realise it was just the normal aches and pains of life that had been masked when on Pred.

However, it could be remnants of GCA lingering, previous doses were just enough to control it, but your attempt to get lower was enough for it to raise its ugly head again.

If you still have pain you could try an extra mg -or even 0.5mg that may be enough to sort things out - and in the great scheme of things not going to give you any side effects.

Get checked for other things, but if you have to stay at 1mg or 2mg for a bit longer, does it really matter. I think my GCA took about 5 years to burn out, so maybe 3 is a bit hopeful.

Please let us know how things go.

PS. when you get stable, and start thinking about reducing again try 0.5mg a time, and on a slow taper.

[Polywotsit PMRGCAuk team member]

Please - if you have shoulder pain after being on steroids for such a long time, the pain may well be rotator cuff damage from prednisone. So increasing your dose won't help at all! I had excruciating shoulder pain on final steroid withdrawal. This is the sting in the tail of PMR and GCA. Something to get through, a leaving present from the steroids, but not PMR. See your doctor about it.

[grannma in reply to Polywotsit]

Thank you, Kate!!! I have read your book many times because it is permanently on my kindle! Enormous help book! Now is the perfect time to give you kiddos and a sincere thank you!

I have not increased prednisone because we are in Mexico for awhile! After reading your response, I have decided to try massages and sunshine until we go home!

I am also hoping to use your slow method to get off the final hill of prednisone, if bloodwork allows! Maybe then we would know if my shoulder,etc. pain is a "present" from prednisone!!!

Thanks so much for all the input! This TA has been a rollercoaster ride for the past three years, and your forum has given me hope and the consistent knowledge I have needed!

[Polywotsit PMRGCAuk team member]

Brilliant! Take care and have a wonderful holiday.

[PMRpro Ambassador]

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[grannma]

Hi Elizcarroll! I have had a unique experience, as does everyone, but I must share to see if anyone else has traveled my road!

5 years ago I had Temporal Arteritis ! I was on prednisone for 3 years and then back to normal ( I thought)! I continued with side effects shifting in my body for 2 years ( hip pain, blurriness, fatigue, etc., but never remained in one symptom so I just blamed it on prednisone side

effects!

I year ago I started getting lightheaded when “stopping” to talk on my daily walks, getting up from chairs. Dr. said hypotension. It had gotten worse so my doctor sent me to Stanford Autonomic Neurological Doctor who tells me I have severe Orthostatic Hypotension PLUS Parkinsonism!( 4hours of testing) My husband has Parkinson’s, PD, so I am truly knowledgeable of PD (20 years), but have never heard of Parkinsonism!

Stanford doctor wanted a “Neuclear Brain Scan to see what it would show!

Needless to say, by the scan, it is believed I have PD! How in the world could this happen? Drug induced or viral infections. I am still in denial while caregiving for my husband!!! I am now attending PD support group And Caregivers support group!I pray for all you when TA or GCA is in remission, that it stays in remission!!

A true life change is in store for us! P D meds have alleviated Aches and pains I have been enduring and for this I thank God! My prayer is for God to Bless all of you in your trials, TA is gone , but on w /PD! I have been a faithful reader of Healthunlocked and will now be a lifelong member! Good thing is “the sun always comes out in the morning”

[PMRpro Ambassador in reply to grannma]

Parkinsonism is just the word to describe the symptoms - which can be due to other underlying causes besides actual Parkinson's Disease.

What a horrible coincidence - sometimes life sucks.

[Dream21]

Yes. I have GCA and PMR. I was diagnosed with these at different times.