Polymyalgia Rheumatica- PMR

[A77bruin]

Hello…I am new to these boards. I was diagnosed with PMR about 5 months ago. I am currently taking 20 mg of Prednisone. I hate how it makes me feel and the weight I have gained. The worse part is that I tore my rotator cuff including a torn tendon (left side…..and I’m left handed). I was scheduled for surgery last week, but until I am down to 5 mg of Prednisone, the surgeon won’t operate. My rheumatologist says that is secondary to my PMR. Meanwhile, I feel crappy due to my torn rotator cuff and I feel crappy from the Prednisone. No questions here……just venting. Thanks for listening.

[PMRpro Ambassador]

Hi and welcome.

As a speedy response before I head for bed - cut your carbs, especially processed ones, drastically. We don't say No carb, that is hard - but cutting carbs will help with the weight problem and it is even possible to lose weight while still on relatively high doses of pred. I lost 35lb while still on between 10-15mg and I'm not the only one.

To still be at 20mg after 5 months is quite high - have you tried reducing the dose at all?

[A77bruin in reply to PMRpro]

I was down to 5 at one point, but my head felt like it was splitting open for 4 days in a row…..and my eyes weren’t focusing like they should. I went to an Opthalmologist to check everything out. He upped my Prednisone to 15 mg. and my rheumatologist upped it to 20. Waiting for my next appt. to see where we go from here. At 15 my hips were sore and my legs felt weak, that is why I was upped to 20.

[PMRpro Ambassador in reply to A77bruin]

Sounds as if they think there might be GCA lurking, or at least LVV (large vessel vasculitis)

[A77bruin in reply to PMRpro]

I had a temporal artery biopsy - no GCA…..thank goodness!

[PMRpro Ambassador in reply to A77bruin]

A negative biopsy doesn't mean you definitely don't have GCA - it means they didn't find any sign of it and there is a whole range of reasons for that!!

[A77bruin in reply to PMRpro]

Oh crap! Can I assume you are also living with it?

[A77bruin in reply to PMRpro]

Never mind…just read your bio….WOW!

[PMRpro Ambassador in reply to A77bruin]

No proof that I have anything more than PMR - but that is bad enough sometimes. But I have gathered a lot of experience in 13 years on the forums and involvement with the charity

[cranberryt in reply to A77bruin]

Down to 5mg in under 5 months is no wonder you were feeling poorly! The absolute minimum to get there should be 7 months (if you start at 15 and go down 2.5 until 10 and then 1 after that). but I have never actually met anyone who has been able to taper that quickly! Can they gove yiu something else for the shoulder pain while you wait? It could be a while.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe have a look through this post for general info…

healthunlocked.com/pmrgcauk...

I sympathise with your shoulder issues. Had replacement and a bit of a repair to RC last year (fortunately off Pred and GCA in remission).

Bit surprised surgeon wants you down as low as 5mg…many on here have had operations on higher than that…between that and 10mg…perhaps a further discussion might be useful.

Also have a browse through FAQs - info on there about losing weight etc.

[A77bruin in reply to DorsetLady]

Thanks so much for that. So informative. Regarding my RC (including one torn tendon and one partially torn tendon), my rheumatologist agreed about no surgery for at least 3-4 months. She is way more concerned about my PMR. My pain lingers……..

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

See you had a TAB, but as PMRpro says a negative result doesn’t always mean negative…..so maybe that needs further investigation.

When you say pain lingers…what pain exactly? I know you have RC problems, but it could be a combination of that and GCA.

My GCA was initially diagnosed as a frozen shoulder…it wasn’t!

[A77bruin in reply to DorsetLady]

I had an MRI on my shoulder and it showed the torn tendons.

Side note: today I have tingling down my right leg…..seems to be coming from my hip…..YIKES!

[-LJ-]

Diagnosed 5 months ago and went from 20 to 5? Did I read that right? That seems much too fast…It took me about a year and 1\2 to get to 5. I, too started at 20. I know when you read more posts you will quickly catch on to the slow taper. No matter what the Dr. Says….you can’t rush PMR. Some doctors are very anxious to get you off prednisone but Your body will tell you when you can reduce. Prednisone is really your friend, but the beginning is hard. It will get better. No wonder you are feeling so crappy! Not good to go up and down. Start over and stay on a steady road. I stayed at 20 for at least a month if I remember correctly. (Been at 0 for 2 years now after 2 years of PMR). DON’T RUSH!

[A77bruin in reply to -LJ-]

Thanks much. Since I am now under the care of a Rheumatologist, I feel much more confident about the proper treatment.

[ChinaWuntoo in reply to A77bruin]

I suspect many on here will have a smile at that - not being unkind to you, just a reflection of our experiences with rheumatologists. Many of us find that our GP understands a lot more.

[cranberryt in reply to ChinaWuntoo]

Yes. I have seen very few rheumys who actually treat PMR well. Most relentlessly push tapering with little regard for patient pain.

[A77bruin in reply to A77bruin]

WOW! Who knew?? I feel a lot more confident with my rheumatologist treating me. Her concern with my symptoms is top notch. I am in California…..wondering where a lot of you are from.

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

The majority from UK (the charity is UK based), some from Europe, US, Canada, Australia and New Zealand.

[A77bruin in reply to DorsetLady]

So I may be a lone American?

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

No, not a lone American,, there are quite a few.. Sure they’ll be along to introduce themselves in due course.

[mgrogers99 in reply to A77bruin]

You aren't...California, San Diego here!

[cycli]

Hi A77bruin. Torn RC is nasty. Did mine then snapped it clean after a cycling fall. They operated but too far retracted and a failed op. I have retrained other muscles to replace the RC and my arm has the same range of movement without that muscle, so don't despair. As for your symptoms, I have both PMR and GCA and sorry to say that it sounds like GCA to me. get it checked out again based on symptoms not biopsy. Good luck and sorry if it's GCA. It is not a nice one.

[A77bruin in reply to cycli]

Hi…..What do you mean it sounds like GCA? What in my story sounded like that?

[HeronNS in reply to A77bruin]

Probably the splitting head pain. ?

[A77bruin in reply to HeronNS]

Ohhhh…..once I went from 5 mg of Prednisone to 20 mg, it stopped…..

[HeronNS in reply to A77bruin]

That's good.

[cycli in reply to A77bruin]

that's the point. Pred. works when nothing else does. Just concerned. No hassle. If you trust in your rheumy then ge=reat. We have a different experience here in uk, most rheumies are outdated and stuck. We have to fend for ourselves quite often hence our concern. If it is GCA which for your sake I really hope it isn't then I think your symptom might be onset so take care. That's all. Good luck

[DorsetLady PMRGCAuk volunteer in reply to cycli]

“We have a different experience here in uk, most rheumies are outdated and stuck. “…..there are a lot of good ones too, but they rarely get mentioned on here, certainly not as much as the bad ones!

[A77bruin in reply to DorsetLady]

Come to my town..... Love mine! I feel very fortunate!

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

Would love to come to your town, but fortunately I don’t need a Rheumy at the moment…GCA in remission and off Pred for 5 years…..

although I do suspect I have beginnings of rheumatoid arthritis as well as definite osteoarthritis…but such is life. 😉

[HeronNS in reply to DorsetLady]

What makes you wonder about RA? Sometimes I do too, but I know nothing.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Middle fingers on hands (although right worse than left) are showing typical signs - swelling around joint nearest top (nail) and it hurts a bit when I bend it. Very early days, fortunately not showing any signs of deformity at present. But my maternal grandmother had it quite badly from what I can recall.

[A77bruin in reply to DorsetLady]

In your opinion, would heat or ice help to relieve hip pain?

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

Always worth trying…..maybe try heat on it’s own initially. Alternating heat/cold can also help, really depends what causing it.

[PMRpro Ambassador in reply to DorsetLady]

Not simply Heberden's nodes? I have one, right index finger. Had it for 20+ years - no sign of RA

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Would make sense I suppose as I have OA in major joints…will have to get them checked …sometime…

[HeronNS in reply to DorsetLady]

My doctor diagnosed OA when I was 40 on basis of enlarged finger joint. Since then confirmed by x-ray in spine, especially neck, hands, feet and knees. A few weeks ago my thumb (near nail) was very sensitive to touch, sharp small pain like a hang nail being pulled. Within a few days thumb joint had swelled, apparently permanently. It was the suddenness which concerned me. I apply Flexiseq when I take care of my knees daily and so far not aware of difficulty using the thumb. Not my dominant hand. But a lot of my finger joints are enlarged, but it didn't happen the same way.

[cycli in reply to DorsetLady]

true DL i was just trying to explain why the concern. Clearly A77bruin is well cared for and not worried.

[piglette]

For my hip replacement the surgeon wanted me down to zero. Initially he was adamant. I did negotiate with him. I am not sure he would have gone over 10mg though.

[A77bruin in reply to piglette]

Mine will not go over 5 mg…..and my rheumatologist will not go below 20 mg at this time…..

[piglette in reply to A77bruin]

That is difficult.

[A77bruin in reply to piglette]

Tell me about it!!

[Alebeau]

I suffered rotator cuff pain for 15 years before getting the right solution without surgery. I had tendon damage on both sides so I was miserable on bad days and careful not to lift my arms due to the stabbing pains.

I had physio many times before that but to no avail.

Do you have good and bad days?

Is the damage in your shoulder due to an accident?

Mine was a gradual onset of pain when lifting my arms to reach for something.

If you have a similar experience to mine I can share the exercise with you.

It was a miracle for me as I am now pain free ever since I started that exercise routine and am forever grateful for the physical specialist who diagnosed my problem.

[A77bruin in reply to Alebeau]

Hi and thank you so much for sharing your story. While on prednisone, and already being compromised in my shoulders, I tried to hoist myself up onto the counter to reach something. Stupid move? Yes. Bottom line I tore my rotator cuff, completely tore one tendon and partially tore a second tendon. I would love to hear any exercise you do to strengthen yours.

[Alebeau in reply to A77bruin]

To start I only did this exercise on a good day, if I was in pain I could not do them without making matters worse.

Also, at the start I was very round shouldered and now I am not as this exercise strengthens the muscles around the rotator cuffs.

Lie face down on a carpet and extend both arms in front of you. Then using only the shoulder muscles raise your arms off the floor like you are superman and hold for 5 seconds. Repeat this 4 or 5 times.

Now put your arms down beside your body then using only the shoulder muscles raise both arms as high as you can and hold 5 seconds. Repeat 4 or 5 times.

Your head should remain on the floor for both.

That's it.

When I started this exercise both my shoulders touched the floor when laying face down. Now I have a hard time to force them to touch the floor.

Good luck.

[mgrogers99 in reply to Alebeau]

Thanks for posting the exercise...I am going to do them! I do not want RC surgery so am eager to try this.

[Alebeau in reply to mgrogers99]

It takes a while to work so don't give up. For me the shoulder pain got less and less the more I did this exercise. I see in my leg that I keep that after a year the shoulder pain was much much reduced.

I started exercising the shoulders in 1993 as I mentioned before I am totally pain free in the shoulders now.

I hardly ever have to any exercises for that as the muscles have been strengthened enough to maintain good spacing around the tendons that were previously being chaffed.

I wish you success.

[mgrogers99 in reply to Alebeau]

Thank you!!

[A77bruin in reply to A77bruin]

Just got back from the orthopedic surgeon. Because my tendons are torn away from the humerus head I am to do no physical therapy and no exercises. Back to square one……

[pegpowell]

I had a slightly torn rotator cuff and the ortho surgeon gave me a steroid shot which worked. Could not use my right arm for a while. This was during the beginning of PMR diagnosis. A year later I reached too far up and damaged it again but it healed.

[A77bruin in reply to pegpowell]

But yours was slightly torn…,,mine is completely ripped…..tendon and all!!

[pegpowell in reply to A77bruin]

At the time I did not know how bad it was. I do know that it isn't necessary to not take pred when having an operation.

[A77bruin in reply to pegpowell]

The amount of Prednisone I am on will inhibit the healing process tremendously.

[cranberryt]

Yes, tapering quickly is certainly possible with other conditions but I haven’t seen it with PMR, unless it’s not truly PMR.

[A77bruin]

Haha….I had trigger finger (actually thumb) surgery about 2 years ago……

[HeronNS]

A physiotherapist taught me how to release the affected finger. A couple more episodes, and then never occurred again, many years ago now.