I was just diagnosed with PMR two weeks ago. For three or four weeks I had been dealing with severe muscle and joint pain in my shoulders, arms, hips, quads and glutes. The pain was so bad in the morning that I could hardly get out of bed. Then I couldn't shower or wash my hair until late in the afternoon when I loosened up a bit. Even then I could get only one arm above my head -- using the other arm to help lift the other arm. Dressing was difficult and had to give up wearing T-shirts (don't know how the ladies put on those things that have to be fastened in the back?? tee hee).
Two months ago I injured my right shoulder when lifting my mom from the seat of my car to a wheel chair. Xray and MRI showed extreme tendinitis and bursitis in three areas of my RT shoulder - but no tear. I have been doing physical therapy for treatment of this. All of a sudden things started to get worse where it seemed the tendinitis had spread. This didn't make sense. Then I noticed pain in my hip joints when getting in and out of the car. One morning after struggling to get out of bed, I couldn't reach the faucet to turn on water to brush my teeth. I thought I was going crazy!
After researching \"muscle/joint pain\" on the internet, I stumbled on what I thought might be the cause... a possible side effect to taking Lipitor - a statin to lower cholesterol. I'd been on that for a year and a half. I called my internist (GP) who told me to stop the Lipitor and ordered some blood tests to confirm. Those tests (CK and Aldolase) came back normal. My Physical therapist is the one who suggested I see a Rheumatologist because she knew something else had to be going on. Last week I saw a Rheumy. After a pelvic X-ray (showed normal) and a physical exam, he said he needed to run some blood tests. He was pretty sure I had PMR because I had the classic symptoms. He suggested I start on Prednisone - a medium dose of 10mg after breakfast and 10mg after dinner. He said if I started to feel better it would help confirm his diagnosis. In just 24 hrs. I felt about 30% better. After two days I was 50% better. Now after one week of 20 mg daily I'm what I'd consider to be 80% better! A couple of days ago I actually walked on the treadmill for the first time in many weeks. I only did one mile as my hips started to feel a bit sore - but not too bad. Will take it easy for a bit.
At my Dr's followup yesterday he said he was 98% confident in the PMR diagnosis. My blood work showed CRP1 high @ 6.4 (inflammation); ERC or Sed rate was 85. He also said the CBC tests showed I was borderline anemic. My TSH (Thyroid function) and RA (Rheumatoid factor) both showed normal (2.35 and 6 respectively). The Dr. wants me to stay on 20mg/day for another 3 weeks. After 3 weeks he'll run the blood tests again and will hopefully be able to start lowering my Pred dosage. From reading some of the stories on different forums, it sounds like you shouldn't lower Pred too fast. I'm sure not happy about the possible side effects of Prednisone. It does cause me some heartburn (I take Prilosec OTC @ dinner), possible elevated blood pressure (already hypertensive) and eye pressure elevation (I already have glaucoma)... not to mention the osteoporosis risk. I asked the Rheumy how long PMR usually lasts. He said between 6 mos. and 6 years. Yikes!
I'm retired so don't have to work for a living. Thank God for that. Don't know how some are able to keep working with acute muscle pain. It's got to be very difficult. I'm an amateur musician and had to give up playing my horn for awhile because it weighs 10#. I just started back to play and hopefully will be able to continue. I do feel some bicep pain after playing for only 15 minutes.
___________
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 had run a marathon so I skipped the next day's exercise. Today 2 hours after breakfast (& Ppred) 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). He said since my Adolase and CK tests were normal, that the statin couldn't be the cause. 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 statins? If so, do you also take CoQ10 supplement to counteract the effects of the statin depleting this enzyme?
Thanks.
Hello Rick and welcome all the way from Florida. I'm sorry to hear of the pain that you have been experiencing but happily that it is now under control since commencing Prednisolone.
In answer to your question regarding exercise, everyone is different in their response to this illness and the treatment. From my experience, on one occasion when I felt really fit and pain-free, we went on a very long walk (my husband knew the walk and the distance and thought I could manage it!!!). However, I suddenly became very uncomfortable around the hip and upper leg area but we were committed to now continuing the round walk back to the car. Within the following week, I was almost back to square one and blood tests revealed that the inflammation had climbed back up again necessitating quite a big increase back up on the steroids. I learned my lesson and from then onwards only took walks where I knew I could get back to the car or at least sit down immediately any discomfort appeared. So perhaps your return to your usual exercise routine is a bit soon because until you have your repeat blood tests, you don't even know yet whether the inflammation is settling or not on your starting dose.
As far as your query re your cholesterol medication is concerned, although some sufferers have raised the question of statins - and some statins do carry a risk of muscle problems - I would have thought that as you have been tested for the side effects of the drug and they have come back negative, then Lipitor is not proving a problem for you.
Regarding your mention of possible anaemia, I also had a similar problem pre-diagnosis (it took a year and the arrival of GCA before my PMR was diagnosed). However, the problem sorted itself out on its own, so perhaps there is a link between PMR and possible anaemia and hopefully your's will sort itself out too - meanwhile perhaps you could eat some spinach and other known iron foods.
For your digestive/stomach problems, try a live fat-free yoghurt immediately before taking your steroids - it will line the stomach.
By the way, it is recommended by most medics here that the Prednisolone is taken in one daily dose in the morning with/after breakfast - that's the time when your body is making its own cortisol (steroid).
Perhaps someone else will come along to let you know their experience which will help with your queries.
Meanwhile, go easy on the exercise, and good luck.
MrsO
Thanks Mrs. O for your response. Your suggestion of low fat yogurt is working. I now eat one of those 4oz Activia yogurts and then take my pred while the coffee is still brewing. Thanks for the suggestion.
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, \"Well 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.
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Hello again Rick
I'm so pleased that the yoghurt has helped with your digestive problems and that you are generally feeling so much better all round. Now, a little bit more advice: when you shortly reduce the dose, try and do it at a quiet time and take it easy for that first week to give the body time to adjust to the new dose. It's all too easy when you have such relief upon starting steroids to overdo things and PMR does not like being aggravated! And, yes, like you I felt very hyped up and euphoric when first commencing steroids which probably unfortunately corresponded with a rise in blood pressure, but then I was taking 40mgs. Hope your wife is enjoying having a chatty hubby!
MrsO
Hello Rick I would repeat what Mrs O said I have now had PMR twice and think my second bout was probably brought on by overdoing it I am now trying ( with difficulty ) to respect this illness Steroids made me completely buzz when I first had them and felt I could do anything but it is unfortunately also masking any other aches and pains you have If you exercise too much when you are on them I think you will then damage any weak muscles you had before and new ones !! I certainly managed to get a nasty calf strain through Aerobics while on steroids I went down to 10mg on Monday so have tried to be a biit quieter this week and wheras last week I felt completely pain free !!!!! this week Ive had a twinge or two So just take care and enjoy the buzz while you can but unfortunately it does go as you reduce the steroids !
I've been doing pretty well lately - although sometimes overdoing it with chores. Two days ago I mowed and edged the grass, then fertilized and watered it in - which took about three hours. I thought for sure the next day I'd be paying for it with muscle and joint pain. Well, it just waited until today to show up. At least I can say I accomplished some much needed tasks around the house.
This week I started taking additional supplements in hopes of warding off some of the possible side-effects of taking Prednisone. (Someone wrote there are \"82 possible side effects!\" I sure hope that was an exaggeration :shock: ) I'm taking 2000mg vitamin D3; Citracal Plus (calcium & magnesium); vitamin C (1000mg); and Co-Q10.
Don't know about other folks but I'm having trouble sleeping. I usually fall to sleep in about 5 or 10 minutes, but staying asleep is a different story. This morning I woke up at 4:30 and couldn't get back to sleep. Finally gave up trying and got started with my day. Other days I've made it to 6 or 6:30.
Hi again Rick
It's good to hear that you are having positive results after starting the steroids.
Your additional supplement intake will, I'm sure, help to keep most if not all of those \"82 possible side effects\" at bay, and if you can add in some oily fish, turmeric and garlic you'll frighten them all away!!! :lol:
With regard to your difficulty in sleeping, that is often a problem for PMR sufferers but it is probably being exacerbated in your case by splitting your dose and taking 10mgs in the evening. I think I mentioned in reply to your earlier post that we are generally recommended to take the full dose of steroids first thing in the morning with or after breakfast as that is the time of day that our adrenal glands normally supply our bodies with cortisol (natural steroids). No doubt taking 10mgs of steroid in the evening is keeping you awake and I'm sure someone else will follow to confirm this. If you don't want to combine your dose, perhaps you could try counting :sheep:
Best wishes and sleep well!!!
MrsO
Thanks Mrs. O,
Spitting the dose is what my Rheumy suggested saying that the pain or stiffness in the morning wouldn't be so bad. I think I read somewhere that another PMR patient in the USA who changed to twice per day with much success. I think it was 'Elliott'. Yes, just found his story. He's the one that organized or wrote that PMR study.
If interested, here's a link to his story.
http://www.pmr-gca-northeast.org.uk/stories.php?id=9
I see my Rheumy this Monday morning with blood test follow-ups and if they look ok he hopes to lower the dose some. I'll suggest that (if I can go to 15mg from 20mg) to drop down the supper dose to just 5mg.
Thanks Rick, and I have now re-read Elliott's story, so.......if splitting the dose worked for Elliott then, of course, it could work for you (it has been reported here before that men can respond differently to both PMR and the steroids) but, we don't know whether, like you, he also suffered from poor sleep as a result.
I'm not sure how long ago Elliott wrote his story but he ends up saying he has reached 3mgs - I'm really interested to know if he has now managed to come off the steroids successfully like Ragnar - we do so need to hear of these successful outcomes to boost our morale.
By the way, I loved your caffeinated pussy cat!
MrsO
Hi Rick!
MrsO has already mentioned the fact that the recommendation to take all the steroid dose in the morning is basically to mimic the body's own production of cortisol which peaks between 2am and 8 am. The ideal would be to take it at 3 am or so - as far as the result is concerned! Obviously no-one is going to set the alarm for then! One of the things being looked at is the possibility of producing a delayed release pill so you can take it at night but the effect only starts about 4-6 hours later which would help the sleep problem and the morning stiffness. Given the alleged problems of getting a 1mg enteric coated tablet approved one can only imagine what getting a delayed release pill approved might involve!
However - you say you are quite hyper on your steroids. A more extreme reaction would be heading for the level at which you might have to consider not taking steroids because of the mental effects they sometimes have. One suggestion that occurs to me is that if you are waking so very early - why not try taking your dose very early in the morning and then lying in bed for a couple of hours reading or something before starting to get up and mobilise? This would almost certainly help with the early morning stiffness and allow you to get to sleep for a reasonable length of time too. There have been suggestions elsewhere on this forum about coping with the stiffness if trying to get through PMR without steroids for those unfortunates for whom they may not be an option. They included using an electric blanket so you are really warm before getting out of bed as this often helps the stiffness. Before I was diagnosed, I found if I could get dressed very quickly before I stiffened up I could then do some gentle movement and once I got going things improved steadily through the course of the morning. Keeping going steadily without sitting and developing that stiffness was also helpful.
You will also probably find that after a few weeks the anti-inflammatory effect of the dose you are on becomes such that the next morning stiffness improves anyway - so you could try being patient! I have done the oppposite of you and am now on an alternate day dose of 13mg rather than taking 7 mg every day. For the first week or so I noticed the stiffness in the late afternoon and evening of the second day and in the morning before taking the next dose. That has now resolved. I am sleeping much better and some of the unpleasant side-effects such as night sweats have also disappeared almost completely.
But the bottom line is that we are all different - regardless of gender! And I can tell you that for most of us if we tried to do what you report doing in the garden we'd be on our knees - and not doing the weeding either! It is, however, also important to not think you are invincible because of how well you feel on the steroids - as MrsO has also said, they mask a lot of things and a gentle return to normal levels of activity is only fair to your body. If you do overdo it by mistake it can take a long time to get back to where you had got to the first time round. I was reduced very quickly originally because the consultant didn't think it was PMR anyway and the symptoms returned within 48 hours of stopping taking steroids. It has subsequently been much more difficult coming down and I still haven't got down to the dose at which I was quite OK that first time. Be warned!!!!
Good luck,
EileenH
Three things:
a) I will contact Elliot soon, the survey was a joint one, between the ex-pmrfighters here in the UK and Elliot. We keep in touch and are always urging people to full in the survey. The last time we were in touch he was down to 2mg. If anyone wants a copy of the old press release email me on this site. By the way, we are ex-pmrfighters, as we have all now joined the PMR-GCA UK new Charity.
Rick, the best exercise is a 45 minute walk each and every day. Swimming and aqua aerobics. Gently does it, but keep those muscles working.
b) Taking the dose at night does interfere with most people's sleep patterns. The trick seems to be, wake up, eat a slice of bread cup of tea (get something on your stomach) take your steroids and snuggle down for about an hour or hour and a half.
c) Eileen, \"Given the alleged problems of getting a 1mg enteric coated tablet approved one can only imagine what getting a delayed release pill approved might involve\".
We had this out with four drug companies the 1mg enteric coated. Evidently the enteric coating alters the make-up of the interior and they would then have to trial the enteric coated 1mg and seek approval.
And there is no money to be made out of it
Guess what, most of them also make the gastro-inhibitors.
Your imagination is not working overtime. Its the one thing we could do with - government sponsored research into friendlier medicine where there is no money to be made out of it - private companies must have a return on their research.
Google LDN sometimes and see exactly what I mean. Or email me - you know where.
Went to my Rheumy yesterday and told him I'm feeling 99% better. He drew blood for two blood tests (ESR and CRP) and said he'll know in two days if he can lower my dosage to 15mg/day. I'm leaving town tomorrow morning to drive up to Raleigh, NC and visit my two sons and their family (seven grand kids!). I'm to call the Dr. from my cell to get the blood test results. Also, NABBA (North American Brass Band Assoc.) is holding this year's brass band competition in Raleigh, NC. I'm an amateur musician and this will be a thrill to see and hear. I've been envious of folks in the UK where you can ofter hear wonderful brass bands playing in parks and completing with other bands.
Hi Rick!
Never mind the English brass bands - the place to come to hear them really easily is the Germanic parts of the Alps! Whereas in Britain the brass band has become a threatened species in some areas since the collieries closed, here where I live in northern Italy every village (just about) has one, and they do concerts throughout the summer for the tourists as well as the locals. They are also \"on duty\" for every big festival in the church, funerals and other celebrations. Their members range in age from about 14 to 90 (no kidding, very active pensioners we have here, still skiing and climbing mountains regularly at 80+).
I'm interested to hear how other people's ESR and CRP respond and correlate with dose reduction as mine are low (not even normal for my age) and always have been so I have to go by symptoms all the time.
EileenH
Update...
Got the results from my Rheumy on my blood work the other day. He said my ESR - or sed rate - was down to 9 (from 85 last month), and the CRP1 was down to 0.05 (down from 6.4). So he said there was no sign of inflammation present. Yippee! He said I should decrease the Pred to 15mg / day (10 > breakfast; 5 > dinner). I told him on the phone that that last two days I had been having more muscle pain in my legs and arms but thought maybe I over did it working on my car before leaving on our trip (I rotated the tires on the car). He suggested I stay on 20mg while traveling and then to call him when I got back to town... saying that sometimes travel adds to stress. But then 2 days later I started feeling much better, so I lowered the dosage to 17.5 / day (10 > breakfast; 7.5 > dinner). I think he'll understand... especially since he wanted me to go down to 15 / day.
BTW, I'm having a good visit with my kids and grand-kids (seven) here in Raleigh, NC. The NABBA (North American Brass Band Assoc) competition was awesome too!
Take care folks. My thoughts and prayers are with all of you fellow PMR sufferers.
Hi Rick
That's good news about your blood tests showing that the steroids have brought the inflammation under control and that you have been able to reduce - well done you! Now take it easy during the first week of your reduction and enjoy the rest of the time with your family and any more brass bands you encounter! I live near to the famous Neller Hall Military School of Music in Twickenham and have been to a couple of their open air concerts - a really uplifting, wonderful experience. Keep well and I look forward to hearing of your next successful reduction!
MrsO
Just a quick note or update...
Back home from our trip and called the Dr. (Rheumy) and told him I felt better last week and dropped the dosage to 17.5 / day. He said that was good and told me to go ahead and drop to 15 / day (10 > breakfast; 5 > dinner). Today is only the third day on 15. Yesterday I had some muscle pain, but not too bad. Today is a bit better. I know that it takes some getting used to a lower dose... sort of like 'withdrawal' symptoms.
Cheers everyone, hang tough!
Well done Rick - I'm sure that increased muscle pain will disappear in the next few days. Keep it up.
MrsO
Hi Rick,
Really pleased to hear you had a good time with the family. As Mrs O says, those aches should fade in a few days and its really good to hear that you're managing to reduce the dose quite significantly. Take care and keep in touch.
Lizzie Ellen
Hi folks,
I went to see my eye Dr. (Ophthalmologist) last week for my routine 6 mos check up. I was glad to hear that the pressure hasn't gone up any since starting Pred. I've been on drops to maintain pressure for about 2 years. My eye sight really changed thought. One eye now sees 20/20 without glasses (hasn't been that good for 40 years). As for the other eye, the Doc said. \"Read the lowest line you can on the chart\". I said, \"What chart?\" Ha! I could really only read the very top line. That's like 20/100 I think. I asked the Dr. if this could be caused by the Pred. He said he's never heard of any kind of medication making one eye better and the other one worse. So I had to order new glasses.
Still having some hip, glute, and hamstring pain after being on the lower dosage of Pred (now 15mg) for ten days. Hopefully it will lessen as my body gets used to the lower dose.
Take care folks. I've been reading the other posts/thread, but haven't had anything to contribute.
Hi Rick
I also have raised eye pressure and see a consultant 6-monthly privately -didn't want to take any chances when diagnosed with Temperal Arteritis (GCA) as well. The pressure has increased further whilst on the steroids and I have also developed cataracts (another dreaded steroid side-effect!). The drops have been changed a few times and each variety seems to bring the pressure down for the first few months but then it increases again. They were very raised at my last check a few weeks ago but the consultant has decided to leave things as they are for the next 6 months as the optic nerve is still healthy. I had been informed by a previous ophthalmologist that I had Glaucoma but the present consultant says that I do not have Glaucoma - apparently some ophthalmologists diagnose Glaucoma immediately they see high eye pressure but in fact people with very low pressure can also suffer from Glaucoma.
As regards the Pred affecting the vision, I had a most bizarre experience at my appointment 7 months ago: I could not read anything after the first card with the 3 giant sized letters on them. However, at the more recent appointment after reading the giant letters I could also read the first two lines and some odd letters from a couple of the following lines. The consultant was confused :? to say the least! He said he has absolutely no explanation for that whatsoever. If the Pred is not to blame then maybe it's just something to do with the GCA - or perhaps I should simply just eat more carrots :lol: !
Do hope your body adjusts soon to the reduced dose and that you've taken it easy for a few days so as not to increase the inflammation - bossy boots aren't I!
Take care.
MrsO