Joined PMR - Mar. '09 | Arthritis Information

 

Just found this forum today.  I know they say 'misery loves company', but after reading some of the stories here, it sure doesn't sound like any fun. Thanks for this forum. My hat is off to each and everyone of you suffering through this illness. God bless you all.

-=Rick=-

RickF2011-02-18 21:10:16Hi Rick, welcome.....sorry you have PMR and hope you will be in the short term PMR stay.
We have all good people on here at different stages of PMR and even a few of the successful ones, who are free of PMR, that come back to give the rest of us encouragement!

We mostly all have this Love/Hate relationship with Pred...Love because it takes away the pain, Hate because of the side effects that we 'May get', Got, along the way!    but ... it is sooo good to get the pain and stiffness to a level that life can go on. I have said 'May get' as not all people get serious, side effects. If they do happen then you deal with what is thrown at you!

I am in my 5th Year and have experienced most of those. I had weaned down to " off Pred" in January this year, but am now back on 5mg. I had wanted off and have been taking Plaquenil and Methotrexate to achieve this.
Unfortunately the pain and stiffness came back with a vengeance, my ESR & CRP blood tests were very high and I was so glad to get back on Pred and get relief again.

Re your heart burn ... I take Pred in the am only and half way into my breakfast.
I'm sure you will get the support of others here, so ask anything, anytime and you can also vent as well!!
gentle hugs, Lyn

Hi Rick

It is not fun - but we do  have fun on this forum, but it also gives us a place to moan, and ask the stupid questions.

Take a look at www.pmr-gca-northeast.org.uk and explore the site. And there is an email group for men only to be found on that site, as sometimes men want to ask those question that they don't want to ask women.   And as out of every 100 people with PMR, 97 are women.   Or that is what the statistics say.

The one good thing for you is that men seem to get less side effects and recover more quickly than women do  - no don't ask my why as there is no known cause or cure at present.   Research is being pushed for in various places.

Also another patients forum located in the UK is http://experience.patient.co.uk

Some of those postings can be hilarious nut very informative.

Good Luck in your brand new journey,  learn to go with the flow  - do not look on pred as your enemy  - its not - PMR is and pred gives you some quality of life back.  Better than none.
Hi Rick

Thanks for the welcoming posts.

A few questions...

1) Is it normal to have trouble getting back to exercise?  Two days ago I started back on the treadmill and quit after only 20 mins or 1 mile. The next day my hip joints felt like I ran a marathon so I skipped yesterday's exercise.  Today 2 hours after breakfast (& pred) I walked for 30 mins or 1.7 miles... my usual daily exercise.  My hips are a bit sore again.  I'm thinking it just takes time to get used to exercising again.  Is this correct?

2.) My internist (or GP) advised me to get back on statin drug (Lipitor 20mg).  I noticed in a survey that quite a number of PMR suffers had been taking a statin to lower their cholesterol before acquiring PMR.  I think in was on Elliott's survey, but can't find it now.  Is it safe to go back on a statin?  If so, do you also take CoQ10 supplement to counteract the effects of the statin depleting this enzyme?

The Truth about CoQ10 and statins:
http://www.healthy-heart-guide.com/benefits-of-coq10.html

Mayo Clinic on CoQ10:
http://www.mayoclinic.com/health/coenzyme-q10/AN01541

Statin Induced PMR:
http://www.spacedoc.net/polymyalgia_rheumatica.html

Thanks.
RickF2010-03-25 14:36:31Hi Rick! So sorry to hear you have joined us. PMR is no fun. I had it for 2 years . It went away for 5 and came back as ??? still finding out what. Stiff in AM (not as bad as before like you I could not raise my arms or even turn the tap on or comb my hair.) but now have stiffnes in hands and wrists aswell. Also osteoperosis has set in. marianne19522010-03-25 16:07:28 Hi- I have found that exercise helps me cope with the discomfort and pain of PMR. I was put on 10 mg of prednisone end of last July and am tapering off 1 mg at a time with one reversal from  10 to nine and back again. Now I am at four but trying for the first time to go more slowly with old dose and then new dose as was suggested earlier in this forum. I am concerned that when the PMR leaves..yes, still hopeful..that my body is in as good condition as possible..so..I do yoga , walk now three miles now and do a series of upper arm stretches using stretch bands or kneeling over a large ball. When the pain hits, I exercise. ..this may not help anyone else but I am trying this out ..takes EFFORT....also have pool exercises that  really are my favourite thing..curl twice a week and can do nine holes of golf in season..all of this "pushing myself" ..not sure if I am helping myself or not..hope so. Have gained twenty pounds in spite of watching my diet.  YIKES!!  Does moderate exercise give any of you relief?I was just watching Dr Rosenfelt's segment on Fox TV. He mentioned people that took statins do have the chance to get muscle issues and to reduce the dosage from 80 to 40 mg may help avoiding getting that. Guess that info comes too late for you . As far as reducing the pred. It took me 2 years to get off. The way it worked was reducing by 2.5 every month till you get to 10mgs. After that reducing by 1 mg each month. marianne19522010-03-28 08:00:30Marianne 1952

Depends on the statin,  Simvastatin seems to be the main culprit.   But as usual, if you are prescribed a drug.    Read the side effects.


Thanks for all the follow-up posts...

Just an update...
Gosh I feel great!!  Of course I know it's the Pred as I'm still on 20mg/day.  In another 10 days I have a followup visit with my Rheumy for blood tests and probable drop in dosage.  What's the phrase... 'better living through chemistry'?  Ha!  I no longer have any symptoms my orthopedic surgeon diagnosed of rotator-cuff tendinitis and bursitis in three places in my right shoulder.  The MRI 2 months ago showed extreme inflation - but no muscle or tendon tear. I suspect now that this is probably my start with PMR.  Exercise isn't hurting anymore either.  Just got back to playing in two bands this week.  I'm able to do numerous projects around the house without much discomfort. The Pred gets me motivated to do those projects too.  I assume others have experienced this as well... the euphoria, energy pick-up, etc.  I just hope there's not an energy crash when the dosage comes down - but I suspect there will be.

I noticed the pred makes me talk more too.  My wife says, "I can see the prednisone has kicked it again as you're talking too much".  I just say, "I'm just trying to catch up for the past 40 years hon".  Ha

Both my GP and Rheumy said they saw no reason for me not to go back on Lipitor-20 (statin) since two blood tests (CK and Adolase) showed normal. So I've started back on Lipitor last week.  I'd really rather not take it, but it sure does lower the LDL (lousy) cholesterol. I also take the Co-Q10 supplement to help with cell and muscle repair plus several other benefits.  Both Dr's said it was a good supp. My daughter-in-law is a pharmacist and she agreed it sounded like a good supplement.  It's 'fat soluble' so needs to be taken with food.  The way Lipitor (& some other statins work) is it depletes or reduces some of the body's normal making of this important enzyme.

For more on Co-Q10:
http://www.umm.edu/altmed/articles/coenzyme-q10-000295.htm


RickF2010-03-31 06:06:15 I see I haven't updated this thread in some time.  Oh well. 

After about six weeks (April), my blood work looked good so the Dr. (Rheumy) suggested I try lowering to 15 mg.  This went pretty well.  Then in June, ESR was 19 (normal is 20) and CRP was normal so he suggested I lower to 12.5 mg. Six weeks later, my ESR went up to 25 so I had to stay at 12.5 level for another six weeks.

Two days ago, Monday, Aug 30th, I was in for followup blood tests. He called this afternoon to say that my ESR came down to 20 (normal is 20), CRP was normal as was compete metabolic panel (liver function, sugar, etc). He suggested I try to lower from 12.5 mg to 10 mg. I asked him if that percentage drop... 20%, could be problematic. He said it could be and to call him if I had any problems.

So here's hoping that this will work. I know that it may take about a week of putting up with a little more pain and discomfort because of possible withdrawal symptoms.  RickF2010-09-01 13:34:39Update...

I went to see my Dr. (rheumy) Oct 16th for my 6-week followup. He called me after my blood work results were back to tell me that my ESR (sed rate) was stable at 20 and CRP was normal. This is after being on 10mg per day (down from 12.5mg per day). He said I could try to reduce my Prednisone down to 9mg ea day and that he'd leave the manner in which I reduce up to me. I could take 10mg one day and 7.5mg the next day (avg = 8.75 per day – a 12.5% drop), or... he could write a script for some 1mg tablets so I could take 9 mg each day. I'm going to try 10 / 7.5 method as I have plenty of 5mg tablets on hand.

My rheumy also told me that my vitamin D level was a bit low at 27. He said the normal range is 30 to 100. I told him that I had been taking 4000 iu daily (2000 after breakfast; 2000 after dinner) for the past 6 mos and was surprised it was low. I only stopped taking the Vit-D about 10 days ago after seeing the GI doctor for stomach problems. The GI doc explained that 'over the counter' vitamins have a lot of filler in them and can cause gas and stomach upset. My rheumy called in a prescription for Vitamin D for me. I picked up the script today.  It's for 50,000 iu of vitamin D — but is only to be taken once per week. Wow... 50,000!  Evidently in prescription form it's different and doesn't cause stomach distress. Also, this script is Vit -D2 not Vit-D3. We'll see how that goes. (So far as of today, Nov. 13th, no problem taking this mega dosage)

I found an interesting link where this high level of Vitamin D is discussed. Looks like everyone that posted there had no trouble taking that dosage AND felt better afterward.

Is 50,000 iu of vitamin d once a week harmful to you?
http://www.healthcentral.com/diet-exercise/c/question/43035/44608

After taking 8.75 mg of Pred (10 one day / 7.5 the next), I've been feeling a bit more discomfort.  Leg muscle pain and some arm pain.  I went back up to 10mg for 3 days and then restarted the 10–7.5 dosage.  Seems to have helped.  We'll see what the next blood tests show.  I suspect the ESR will be elevated a bit.

Take care everyone.  Hope you're managing ok. Thanks russellcat! That is interesting about the vitamin D ! I've been taking capsules that look like they are oil-based; I wonder if those have the fillers, etc you are talking about? My rheumy never suggested prescription Vit D--I will have to ask. I'm glad you are having no side effects from taking a massive dose.
It's good that your rheumy is letting you taper on your own schedule.
Take care and keep us posted.

freesia2
freesia22010-11-13 09:59:04 Update...

I haven't done so well these past six weeks in reducing pred (was on 8.75 mg - or 10 one day; 7.5 the next).  On Dec 21st I went back up to 10 mg as the muscle pain got too bad in my hamstrings and buttocks and was really wobbling around the house.  I was in to see my Rheumy this past Monday (Jan 3) and told him about having to go back up to 10mg.  He drew blood to run the standard tests for PMR (ESR & CRP).  He also ran a CPK (or CK) test as I told him that I've been feeling intermittent pain at the back of both arms (triceps). He thought that maybe the half dose (10mg) of Lipitor could be contributing to this. That test came back normal – but he said this test is not always accurate.  I'm still going to try to get off Lipitor entirely when I see my internist or GP next week.  My ESR (sed rate) was 14 and CRP was normal.  My Rheumy said he didn't want me to try to reduce right away but when I started to feel better I should try.  I asked him if he would write a script for 1-mg tablets so I could try reducing to 9 mg per day for one month (which is exactly 10% reduction from 10), then try the alternate day of 10 - 7.5 if that goes well. I guess the 1 mg tablets are bit more expensive.  We'll see how it goes... but for now I'm staying on 10mg.

Hope everyone here has a Happy New Year!
RickF2011-01-07 08:33:15RickF

Sorry to hear you are not doing so well at present.  Please remember  you were not diagnosed with PMR until March 2010, so on the scale of things  Pred at 10mg is not so bad.

I don't know anything about Lipitor at all.  However I wonder if you are taking a maintenance dose of Vit D, as I have discovered that some people need to take the maintenance dose to keep the level up.  I know you live in a sunshine State, but once you reach 60 your body does not hold onto Vit D as good as it used to.  I had pain in the triceps, and as I do not have PMR, once on the Vit D that was alleviated.

Don't worry too much about trying to come down from the pred dosage, remember PMR has a mind of its own and comes when it wants and goes when it wants and the ESR isonly a marker  - some people have PMR and never have raised markers.

Have you read Ragnars method of reduction  its on this site somewhere, but also on www.pmr-gca-northeast.org.uk under Peoples Stories and it is going to be updated within the next two weeks as Ragnar's pmr has disappeared.   Hang on in their RickF you will have a better 2011 hopefully.
Thanks for the encouragement Mrs UK. Yes, I remember Ragnar's regimen and have a copy on my computer.

You know, that's a good suggestion about vitamin D.  I was on the mega dose of 50,000iu once per week for eight weeks, and my vit D level went up to 55 after that.  He said I should stop taking those and go back to the regular 'over the counter' variety (vit D3 2000iu).  I sort of forgot that.

BTW, I picked up the script for 1-mg Pred today.  I can see how someone on the UK forum (forgot who that was now RickF2011-01-07 20:36:45 I was in to see my Rheumy on Monday for my 6 week follow-up.  He drew blood to have my ESR and CRP checked. I told him that I was having discomfort in my thighs (ham strings) and now my left shoulder was sore in the mornings. He gave me a sheet with information on Methotrexate and said I should consider taking that since I was having trouble reducing Pred. It would be one tablet per week (don't know the strength). I don't like all of the side effects listed on that page so I think I'm going to try to hold off on that for awhile. He also ordered my first bone density test – or Dexa scan.  Said it would be like a baseline test for me as I'm coming up on my 1-year anniversary of being Dx'd with PMR. The Dr. called the next day to say my ESR was 18 (up from 14 six weeks earlier while on 10 mg) and CRP was normal. Still a pretty good reading, so said I could consider dropping the dose of Pred again when I felt up to it. He said he trusts my judgment. As I'm on 9 mg now, I think I'll try going to 8.5 mg per day. Going to 8 mg might work, but it's just a bit more than 10%.  We'll see how 8.5 goes.  At least it's in the right direction. ear.  He laughed.   RickF2011-02-18 17:59:35Hi Rick

 

Your ESR reading is certainly within the UK norm of 1-20, and with a CRP reading of "normal" in spite of your couple of painful spots, it does seem as though you are heading in the right direction. 

 

The CRP is often deemed to be the more accurate indicator of inflammation.  As you're going to try dropping to 8.5, perhaps you should following Ragnar's method and do 3 days at 9 and one day at 8.5 and repeat for a week and then you could try 2 days at 9 and one day at 8.5 and so on.  Certainly this method is proving to be quite successful among several of us on the UK forum, including me who is down from 40mg almost 4 years ago to 1mg now.

 

Love that whole new meaning you've given to PMR - you must post it on the UK forum and give us all a laugh!

 

Take care and the best of luck with the next reduction, bearing in mind you just might have a little steroid withdrawal pain for a few days but with any luck you wont!

 

 

Hi Rick - just another thought re the ESR reading.

 

My present reading is 22 whereas it has been as low as 8 on the higher doses of Prednisolone so I'm thinking that the higher doses can take it down to a lower level than might be normal for you.  With a throat infection just before Christmas my ESR rose to 49 so with a few ongoing after effects it may still reduce further from its present 22.

 

Also, apparently there are slightly different levels of "normal" for men and women and for those aged over 50 with us women being allowed a slightly higher rate - a little compensation for us golden oldies!

 

(MrsO in UK)

 

 

[QUOTE=Celtic]Hi Rick The alternate days of 9 and 10 mg didn't work for me.  I tried for a week and had a flare up.  Went back up to 12.5mg per day. 

The last time I was in to see the Dr, (Rheumy) he said that since my ESR and CRP were normal, I should try reducing — but only when I felt up to it.  Since he was suggesting I might consider taking Methotrexate (since I was having trouble reducing pred), I think that motivated me to try reducing before I was really ready. The Metho sounded like a threat of sorts as I really don't want to take that. The NIH (Nat'l Institute of Health) has a warning at the top of the Methotrexate page that reads...

 "You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications."

National Institute of Health on Methotrexate:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000547/

Since I was already in some discomfort when I tried to reduce is probably one reason the attempted reduction failed.  I just wasn't ready yet.  Plus, I had some extra stress going on in my life in getting ready to perform a solo in front of the band.  So about 2 weeks ago I called the Dr's office and they suggested I go back up to 12.5 mg for a week then call back. I started feeling better in 2 or 3 days.  After 2 weeks on 12.5, I'm now doing alternate days of 10 then 12.5 mg.  I'll see the Dr this coming Monday for a follow-up.

The stress has eased and I'm feeling ok.  The solo last Saturday went pretty well.  If interested, and you have some speakers connected to your computer you can listen to it on line here if interested:

Rhapsody for Euphonium
http://www.acidplanet.com/artist.asp?PID=1399115&t=4035
...click on "Play Song" to the right of the title...


RickF2011-03-26 20:45:13Hi Rick, thanks for the information on MTX and your progress. I too am leary of taking it. Even though my rheumy mentioned it one time, at my last visit he said that Prednisone was the treatment of choice. I am now on 17 1/2 mg and doing OK (I had to taper from 60 mg). Thanks, Rick.
I tried taking methotrexate and since it didn't produce any obvious results --like helping me taper-- I discontinued after about 2 1/2 months or so.  My blood values did decrease slightly while I was taking it, but not very much. I couldn't see subjecting my body to yet another medication if there weren't any benefits.

I'm glad you are feeling better.  This disease is really a test of patience.

freesia
I believe it can take a year for any effect to be seen when taking MTX. I'll reserve it for when they really have no other alternatives - i.e. when the steroids are either not working or I am heading for so many co-morbidities that contraindicate steroids that I can't take them.

 

MrsE

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