Hi,
Having been housebound with this for several months now and bed bound for allot of time also, I have lost allot of muscle mass, particularly in my legs and around my hips and upper arms. I know how hard it is to build muscle when one is fit and healthy. Is it realistic to be able to get the muscle back? Thanks.
I developed quite severe steroid myopathy when I was on methyl prednisolone - never with prednisone or prednisolone. Once I stopped the methyl pred and switched to prednisone and walked daily (not far, half an hour) the muscles returned to normal.
I am suffering this too, weak leg muscles following knee injury - but - I've been here before and, yes, the muscles do start to recover once you start using them again. You will improve! Don't worry.
I exercised as much as possible and progressively I have lost muscle and strength and it isn't coming back anytime soon. It is not the same for everyone and still looking for an answer to pred induced myopathy
me too, I’ve lost so much muscle all over, I do exercise to a fashion but it’s not like I used to do, I’m physically not able to. My muscles are disappearing before my eyes, 😢
yes. Same here. I can literally see the shape of my legs changing on a weekly basis
No bramble. you aren't losing muscle to pred induced myopathy like us but to lack of use because you have probably got PMR which is limiting your ability to exercise. Don't deny you are losing muscle as lack of use has bad effects. I'm stuck with lack of muscle and almost total inability to exercise so a double whammy.
I've been very sedentary and lost muscle as well...one more procedure is coming in February, and then I'm going to work on strengthening. My endurance is not at its best now! I've noticed in the past that walking and regular exercise really make a difference. It will come back. I have an 86-year-old friend with GCA who walks 30 minutes per day in the basement of the apartment building where she lives in Maine..too slippery outside. She puts me to shame!! There is hope for sure. 💞
It is realistic for you to re build muscle mass starting with short walks daily when you can - just pace yourself as I didn’t do last Thursday when I think I did too much. It was such a beautiful sunny winter day with a calming supportive friend so I don’t regret the fatigue I felt over the weekend. I had poor REM sleep which I notice makes me feel quite ill on the occasions this happens.
Insufficient REM sleep can make a world of difference in us. How do you track your sleep? Sleep apnea? My CPAP changed my life ..must be 15 years ago...just wondering and wish you the best💞
I have a Garmin Smartwatch which tracks sleep. I’ve found it useful to help with pacing. I feel dreadful when I get no REM sleep and have suffered badly from insomnia since starting steroids. I’ve been very low and exhausted. After much discussion with my GP I started a course of anti depressants which are helping with anxiety and getting to sleep. I’ve just discovered a set of breathing activities on the watch which is helping to calm me as well. Things feel a bit better. Fingers crossed. Thanks for your best wishes. Hope all is good with you.
All sounds very proactive and positive. Have you ever had a sleep study and your doctor considered sleep apnea? I just remember the way I used to look at a walk ahead of me...oh, lord...so long. (This is years before GCA and steroids+). The first time that I slept with the CPAP on I literally bounced across the parking lot of the hospital. Every night when I go to bed, I take that mask off my bedpost...I say, C'mon, you and Mama are going to sleep. I love it. Just saying...💞
ha ha, no I haven’t been assessed with sleep apnea. My sleep problems seem to be related to the steroid effects. It’s been dreadful but it has improved on the medication I’m currently taking. Whether it will improve as I reduce pred further I don’t know. It’s a funny old illness.
Good thing we keep our sense of humor with this 'funny old illness'.😃😆💞
Last night I had a miraculous 8.29 hours sleep with 1hr 48 mins REM, …but as you know this illness can mysteriously fluctuate. Today is a good one though and I have a lovely woman coming round to do a relaxing reflexology session. I’m treating myself like a princess as has been recommended on this site!
AH! What a good night you had! So glad. Continue working on the princess zone and you will perfect it~!💞
The reflexology session was brilliant. She’s a lovely woman, researched my illness before I had the first session. My feet feel like they’re walking on clouds!
Has your doctor mentioned Actemra, TCZ? I read your bio and your initial numbers and immediate visual disturbance were pretty scary. Just curious because my numbers, August 2019, were off the chart as was my left eye by the time I was properly diagnosed. Actemra has given me stability and allowed me to taper. I'm not one of those folks who is in a race to zero....💞
It was all very scary. As far as I know Actemra is not available in the U.K. due to funding. I was given a leaflet on Methrotrexate for info. I read the info and am not interested in that at the moment. I was pretty stable over a month at 17.5 mg and have been on 15 mg for 11 days so far. All seems ok. I have good access to my rheumatology service and my GP sees me monthly. I am in no race to zero either. Trying to follow what my body needs. It’s about the pacing I think. Last week because I had better sleep I overdid it by Friday and I suffered at the weekend. I’ve picked up this week but am never complacent!
It was just food for thought but if you're feeling okay and you see your GP monthly I'm sure it will be brought up at least I hope it would. It is available in the UK but I don't know what the criteria is. It sounds like you're doing very well and have a good attitude which is more than 50% of the battle. Sometimes the only way we know we've had great days is when we do wind up overdoing it. It's just the natural Order of Things! Pardon the capitalization I'm on my phone.. dictating. Be well
it is available for GCA in UK , but it’s not a given -and there are some fairly strict criteria required. See link/
nice.org.uk/guidance/ta518/...
How fascinating. Quite hard to see quality of life noted so baldly in financial terms. I’m doing ok at the moment but have suffered a lot of side effects from prednisolone. Quality of life has been poor, as this illness and the treatment is limiting. I have also been prone to infection and had a couple of nasty viruses. I’ll see how I go on over the next few weeks. I tapered from high doses quickly and successfully, then blipped from 20-17.5. I am now on 15 mg and so far so good.
Walking is good for legs. I use a very small barbell for my upper body. Eating protein can help as well.
i can’t get out of bed, I can’t put on a seatbelt. I can’t use a knife to cut up food. I can’t get dressed. It’s severe
totally understand. It's hard for others to understand howsevere pred. induced myopathy can debilitate.I am not in pain but almost totally unable to do much.Sorry you are so reduced . Is there much fluid swelling. Must say that is seriously affecting me with this cellulitis.
Consultant took the Pred away because he says I’m too young at 52 for PMR.
Hi Bramble2000 I am in the same boat. I.am so stuck. I feel really shakey. Yesterday I had to go out for a quick errand and it was awful. Getting in my car was hard...seatbelt difficult let alone walking. Can't write cards or wrap. Very upsetting. I am not getting the best result with the pred. I have been on 23.5 for awhile. I am going on actemra (they think my RA might aldo be involved...I am in the states) but have a skin thing I am seeing derm about tomorrow and need more labs. Good thing is rheumy told me to stay at current prrd level -- usually pushes me to reduce. But since it's not working and pmr symptoms too present I decided to do a plus 5 test so upped it. It is hard to know what is PMR vs. Pred vs. Other stuff. But whatever....my muscles are history. I also have gained weight that I didn't need and soon will have to put an annex on my house for my large face/head. Oy. I pray this stuff resolves itself whenever pred is done or almost done. PMR pain is stopping me in my tracks right now from doing much.....but the muscle issue is also in charge.
I wish you luck with these things....I totally get how you might feel. I am with ya!!
Take good care.
I hear you x
bramble, is there some doubt about your diagnosis? What you’re suffering from sounds extreme. I wonder if you’ve got something else going on too. Maybe time for a full reassessment just to be sure. But yes muscle will rebuild but you need to be able to move to make it happen.
the problem is my consultant stopped the Pred that my GP prescribed as he says I’m too young to have PMR at 52. So I’m back to being bed ridden. I had the Pred for 3 weeks and within 12 hours of starting it, all symptoms resolved. It’s been a horrendous 7 months, I had a PET/CT over 4 weeks ago. I had to be helped on to the table as I can’t lift my legs. I’m still waiting for the results. I have Ankylosing Spondylitis but that’s been ruled out as the cause for this which I agree with. This, is PMR.
It is PMR, Bramble! I’d bet my bottom dollar on that: you have the classic symptoms. What does your GP say? I would trust him/her far, far more than the ‘specialist’ who needs educating….52 too young my foot!
I have had the same GP for 27 years and yes, he’s right, it is PMR. I’ve just had a call from the rheumatologist. He wants to see me tomorrow to go through the scan report. He said, “it looks like PMR”. No sh*t Sherlock!
Good Greif....don't you love it!!! I wonder what woke him up....while you suffered. Saying that 52 is too young doesn't say much about him. I'll be anxious to see what tomorrow brings from the genius; then I would go to the GP ASAP. Taking pred long term, I'm a bit over three years now, and the sun is just beginning to shine a bit for me. I know those months when I, like you, didn't know what was causing what. Hang in..you have many understanding friends here💞💞
I really really struggled with the Pred when I took it for three weeks. I really don’t know how I’m going to manage with it.
I was diagnosed with GCA because I lost sight in one eye, so when they gave me IV prednisone for three days and then really high doses (125 mg per day)....my options were limited. I didn't sleep; brain fog is an understatement...fortunately no gastric issues...but I was willing to tolerate anything to save my other eye. I'm unsure what side effects you have, and I know a few people who can't take it. I always would hold my two hands in front of me and imagine one hand was 'plus' and one was 'minus'....what you have to lose and what you have to gain. After a few years on 80 and 60, I finally got to 40 with Actemra...but I have an ace of a rheumy...he would say.."Now you are going to feel like garbage for 2-3 days"....in time, the good days outweighed the really bad. He told me yesterday I will not get all my muscle tone back, but I can improve...It has been three years and four months...and I have improved. So many stories here, and some are much more difficult than mine. I wish I could help you more...💞
#%^*Rheumatologists who say 52 is too young! I was just that age when diagnosed and I know many others! Would consider ditching that rheumie and working with your PCP. It may be harder to get it under control now. Sorry you are experiencing this!
Bramble has already posted a new thread today to say the rheumy called to say it DOES look like PMR so she should come in tomorrow. With a bit of luck he will have learned that PMR really doesn't read their guidelines - or if it does, understands that the 50 guideline doesn't mean it doesn't happen younger.
Hi Bramble, I feel your annoyance at your doctors age interpretation. I am 61 now but was in my early 50ies when I was diagnosed after much discussion of age. From what I subsequently read, age is only an indicator not a hard and fast rule. Hang on in there, better days are ahed even if they are hard to see just now.
I proved the diagnosis with a pet/Ct scan. He never apologised about it. Unfortunately I can’t take the steroids.
Mine were really bad after 4 months of inactivity and I felt quite disheartened but, as soon as I could, I started gentle stretching exercises. Doing that, together with getting back to my former activities like gardening, housework, walking etc., helped enormously. You'll get there!
Sorrry Bramble. I should have read your profile first. why can't your GP override the rheumy who is another arrogant opinionated one if they insist age rules. You aren't suffering from myopathy like me as you haven't been seriously exposed to pred. It is clearly the opposite. You need pred. Once on it you will be able to stretch and exercise. You haven't yet lost much muscle but it has been reduced in its efficacy by your condition. That's what starving muscle of oxygen does and it can't be improved until the inflammation is controlled and the muscle is allowed to function better.
because I’ve been under the Rheumy for a decade so officially it’s him who should be dealing with this. He was really naffed off that the GP got involved. I’ve had the same GP for 27 years.
He owes you a huge apology and needs to be educated on PMR!!
yeah!
Agree with PMR2011. If they don't apologise get a referral to another. If it was GCA it would be putting your sight in danger. They need re-educating.
he wanted to do the pet/Ct scan to check for cancer so I’m hoping that it’s *just PMR
🙏
Just recently I 'fired' my GP...he got his ego shattered when a 'young' doctor called him regarding me. He carried on so...it was going to be at my expense!! When I could see ego came before my well being, I bid him farewell. We have to be our own best advocates. Your GP sounds like he is spot-on! It is all tough to sort out when you feel like yesterday's garbage! Remember, you are never! alone. 💞Never
In the UK we are very limited in who we see and there’s certain etiquette’s
Finally! I’m sure you’ll have something to say-firm and polite, of course, about your reliable GP, knowing your own body and being well-informed through trusted sources and your own research 😉.
I hope you now get the respect and treatment you need.
thanks
I am shocked to hear of your history and lack of medical intervention in a PMR diagnosis. I remember only too well the levels of pain and incapacitated state of being pre diagnosis. Good luck with a more certain future.
thanks
Mine are improving the more I do. I was fairly weak 2020 but stronger than ever now 😁 on 3mg Pred after 18 months of slow tapering and still a bit sore now and then but I find the more stretching, walking and gentle weights the less I hurt. Also have a read of this recent research about building muscle.
I went from extremely athletic to hardly doing half which is more than most. Around year 3.5 on prednisone I woke up realizing all of a sudden I was loosing major muscle.Fortunately I moved closer to my son who is a strength conditioning coach to some pro athletes so off to him. When I started I had problems doing a squat to lifting 200 lbs.
I have to say I've been off for 2 yrs due to covid and will start all over but it can be done.
muscle weakness
muscle strain 
Muscle pain
Muscle atrophy?
