Would be grateful knowing if others who have been on their Pred & or similar have experienced issues of any tears/rips/strains to their tendons & or ligaments in their feet which have spin off problem for ankles thus contributing to slight balance plus walking issues.
I have been tearing/ripping/spraining (mildly) the above and concerned that obviously these are highly likely to be weakened from steroids spanning 12 -15 months.
Added to this is a history of taking Cipfloxcillian which never aware added to weakening these areas too. Sadly this is the only antibiotic that will work for pneumonia - prevention better than cure so work doubly hard at staying well.
Have I read on this site there is pairing meds that can be taken alongside steroids?
I'm told that I may be on my hydrocortisone for a very long time................
Have not seen my Rheumy yet to discuss the above mentioned problem - see him in 2 weeks.
My kindest as always
Written by
Megams
To view profiles and participate in discussions please or .
My Achilles tendons were affected by steroid use but fortunately my ankles escaped and so did my balance. It also affected my biceps tendons and right shoulder (the other one had previously been partly replaced). A cortisone injection sorted out the shoulder, but I don't think that works for the Achilles. Years ago when I had pain and swelling on one Achilles, the rheumy sent me to the physio for ultrasound therapy which worked almost at once! More recently, I have found it helpful to do stretching and flexing exercises of the tendons before I get up in the morning.
After reading your post I realize just how many areas of the body seem to be affected either by the PMR or the meds - 50/50 each way one would assume.
I am refreshing my memory once more by re-reading Dr K Gilbert's book on PMR & GCA: A survival guide simply because this disease we have is just so complex over and above the steroid long term side effects.
Thank you for the great tip re physio & ultrasound therapy. I will be onto that plus enquiring about stretching/flexing exercises from my trusted physio gentleman next week.
Megams you could have been writing my story. I have pmr & GCA, and have been in steroids for 3 yrs. for the last 15 months I have increasing problems with my ankles and feet. I have seen physios and a podiatrist, who both say my ligaments are very lax, which explains why I stumble or fall so easily. I am 109% sure this is as a result of Prednisolone.
I fell 2 weeks ago, whilst visiting my Rheumatologist in Leeds. Despite the pain I continued to work, I do 12.5hr shifts on a busy ward. After a week my pains became worse, when I attended minor injuries, they informed me I have badly sprained 3 ligaments in my foot. So I have been forced to rest. My Rheumy also thinks I have steroid myopathy weakening my leg muscles. I am unable to stand up from the floor, if there are no props to help me. I am awaiting results of MRI scans of all my muscles from the pelvis down. It's frightening the way Pred has made my muscles weak, and my ankles unstable. I do so many exercises now every day trying to stop or reverse this muscle weakness.
I am not aware of meds that prevent weakening of ligaments, tendons etc. A lot of people take a bisphosphonate to prevent osteoporosis, but this comes with its own issues. Good luck with your Rheumy visit.
Thank you Runrig01 - I feel very much for you and the need to continue working at the hospital - have read your posts with interest in the past and you may be in the unenviable position whereby you can not cease work yet.
I too had worked (part-time) in our local hospital and decided that it was not worth continuing my battle being surrounded by ill people with my suppressed immunity.
I am so sorry to read of your falls and subsequent weakness with the muscles.
I am most conscious myself of every step I take as I did something similar recently to my right ankle.
Sad state of affairs for us all with the unwanted damage that our meds seems to inflict upon our weary bodies - not sure what the answer is but will enquire from a trusted Physio re exercise and possible ultra sound therapy mentioned by Annodomini.
My bone density good pleased to say - keep an eye on this too.
Thanks Megams, I work partly because of the financial side, but more because I don't want to lose my career to this illness. Keep hoping remission is just round the corner.
My bone density shows I've osteopenia with a T-Score of -1.91. I have already suffered stress fractures of both fibulas, which has been put down to Alendronic acid. I am due my yearly dexa scan soon so will be interesting to see if my score is worse, since I stopped AA in June last year. You take good care too, best wishes Runrig x
Runrig01, I cannot stand up from the floor either and my rheumy says this muscle weakness is the result of Cushings which I now have thanks to high dose Prednisone for GCA. Good luck !
I have started going to a physio for ultra sound, it seems my tendons, ligaments, muscles are being affected by the PMR. I think I am falling to bits! I actually thought it was caused by the PMR rather than the steroids, but it is possible it is the steroids or both even.
No good piglette - we will sound as though we are in the same boat.
By the way my vein work done on my legs last year worked on one leg but not the other - the right leg looks simply awful and think that those with PMR should leave their leg veins well alone until the worst of the inflammation has gone into remission.
I have problems around my ankles. I have a Morton's Neuroma - which had been operated on but is kicking off again. I have various other problems with my feet and quite often bi lateral pain on the sides of calf muscles.
I too had worked in a hospital as a chaplain and I gave up in May 2014 - 6 months after diagnosis. This is a horrid condition. And one that is hidden so much of the time because we look ok.
My mum RIP had an expression when she was ill that her looks didn't pity her. It sums it up really. She too had illnesses but often looked OK.
Lovely to hear from you and so sorry to hear of Morton's Neuroma, a name I am not familiar with but will Google it.
Sadly our feet are our vital tools for so many things and never thought that 15 months or more down the track that I would be dealing with a variety of feet issues, along with other new challenges.
I would like a $1 for every person who has told me I look well, many not knowing I have this condition - I could donate the proceeds to starting a support group here in Auckland NZ of which there is absolutely nil support.
The old adage of never" judging a book by its cover" bares testament in this case 110%.
I had achilles problems due to the steroid plus ciprofloxacin - each can cause achilles tendonitis and both together - obviously more likely. I have to say - I doubt it is the only antibiotic that deals with pneumonia and if it is then we're really up the creek without the proverbial paddle!
I had quite bad foot pain with PMR - which made me very wobbly in combo with the general muscle effects of PMR and a lot of people say similar things. I couldn't walk barefoot and I really struggled on uneven ground even when wearing the mountain walking shoes which were the only even remotely comfortable option! Leeds did a survey that found that PMR DOES involve feet and hands - whatever some doctors may try to tell us - and many patients have balance problems. Several people have benefited balance-wise through Nordic walking courses (the poles help a lot) and/or tai chi. This is a place where suitable physio would definitely help.
Some doctors claim that methotrexate can improve the effect of a dose of pred - you gets more bang for your buck. There is mixed evidence at best but the latest 2015 EULAR/ACR recommendations for the management of PMR do suggest the trial in patients at risk of long term treatment but only in consultation with the patient - recommendation 7:
There are a few people on the forums who were able to reduce their pred dose initially with MTX but then had major flares - some of them feel they could have reduced anyway left to their own devices doing it slowly enough and that the reduction let in the flare, one of GCA.
A lot of antibiotic's over the years (prior to ASD closure & usual respiratory issues), Cipflox the only antibiotic when all else failed.
By that stage pneumonia quickly set in & recall my GP saying that one day I would need top shelf stuff which would need to remain in reserve.
I was never aware of damaging consequences of Cipflox until I joined this site & quickly realized why for years I have had reoccurring tennis elbow.
With my present flare (pre Christmas) my symptoms seem to be hands & feet, certainly not aware of this all of last year so maybe these two areas were not originally in the target line of the inflammation?
This flare has coincided with my gradual tapering (as mentioned) & 2nd round of sclerotherapy which I believe has been the catalyst in setting me back.
Great to learn that Leeds did a survey which appeared to include hands & feet.
Extra careful when having my barefoot beach walk especially with numbness in toes & fleshy front part of foot (name escapes me).
Back to my trusty physio for further assistance.
Thank you for the link to the web site which I will study in closer detail.
Thank you too for your kind words - pic taken Christmas 2013 prior to PMR diagnosis - I had a fall a few hours before this was taken, tripped on a mat in front of family - strange the things we remember!
I was on low dose Prednisone for PMR, down to 6 mg, but then diagnosed with GCA so up it went for a while and now I'm down to 17.5. A few months ago I developed hip pain which some days was enough that I couldn't even stand on the leg. The doctor was concerned about Avascular Necrosis of the hip joint, something caused by Prednisone. An MRI showed it wasn't this but I had a large tear in my gluteal muscle. The doctors said it could be from the Prednisone as I hadn't done anything to tear it. I'm having physio and it's getting better but it's been almost 6 months. Good luck !
You have had a difficult time & that tear in your gluteal muscle sounds painful - thank goodness for physio's, they are worth their weight in gold.
Thank goodness for this site where we can share our journey together & know there is someone who may have similar challenges to our own.
I would like to know if our tendons/ligaments/muscles actually ever return to some form of semblance of order once we eventually are steroid free? When ever or if ever that may be possible?
I too am having tendon issues in my feet and achillies tendons, my PMR is well controlled otherwise, my doctor suspected that I might have Psoriatic Arthritis instead and put me on methotrexate, it seemed to be helping a bit but affected my liver so now I'm back to prednisolone and an anti-inflammatory.
A friend told me that they were discussing arthritis on a radio talk show and suggested that I phone in and ask the 'expert' a question. By fluke when I switched on the radio someone else was asking my question, he said "I have PMR and am having problems with my feet" the 'expert' confirmed what my doctor had said which was that foot problems are not usually caused by PMR, suggested seeing a podiatrist and went on to say that PMR affects the over 65s, I was diagnosed when I was 55!
If foot and tendon problems are not caused by PMR there seem to be quite a few of us getting them!
I still don't have a proper diagnosis for what is causing my foot and tendon problems, so I'm taking my steroids, 8mg at present and trying not to over do things. It is summer here and I find that the heat makes my feet and tendons a lot worse.
The one and only bit of practical practical advice I got was from physiotherapist, she suggested that I wear shoes with a medium heel to ease the strain on my tendons, it may not be good long term but it does feel a lot more comfortable.
Thank you for your interesting response of still no suitable answer obviously for you with your continued tendon issues, feet & Achilles.
Good to know u tuned into the radio at the precise moment only to have confirmed what your Dr had already suggested as a prognosis. This is positive & probably only small part of the jig-saw.
When I mentioned last year to my Rheumy that my 3 outer toes on each foot appeared slightly numb he suggested that if this continued an MRI would need to be done.
Now that the fleshy parts are numb I will re-visit his suggestion when I see him on the 15 March.
I can not wear heels of any sort now, only flatties & the heat of our summer has added aggravation to foot & ankle swelling. I'm being extra vigilant when I walk because not so stable.
I am seeing Physio this week to help deal to sore tendons - been using an MSM cream for discomfort & applied topically.
Keep large pump bottle Aloe Vera gel containing Vit. E in the fridge along with magnesium in oil & massage into the legs, arms & feet twice a day.
I lay on my Obe roller morning & night to maintain neutral spine & have legs in air as if riding a bike motion - this helps reduce the puffiness in ankles plus is gentle enough to still keep muscles exercised.
When I get some answers what the issue is will write another post.
So good to read all these stories and realise that the Dr gets it wrong again! Waited 8 weeks for a podiatrist appt only to be given some inserts for my shoes and told not to wear slip-on shoes, but shoes with ankle straps or trainers! My left foot is numb and I am frequently falling over or loosing balance, to the extent that I am afraid to go out on my own. I am totally convinced that this has been caused by the high dose (60mg) Pred that I was on for a month. Lets see what their next good idea is!! Oh dear, that sounds very cynical and I am usually such a nice person!!
Thank you for your response & please don't take yourself down as we have every right to express our dismay with certain medical professionals. We are at the mercy of them in every way & know I was inclined to believe they had all the answers, not so.
I am hoping that Dr Kate Gilbert's -Polymyalgia Rheumatica & Giant Cell Arteritis: a survival guide may be the catalyst for some budding future/present medics to explore & research more in-depth - we may not directly benefit but the next generation will I am sure.
Knowledge is power & briefly told a young part-time lass at our local health shop about living with PMR through my eyes.
She was most interested & asked me to jot down the author & name of the above book so she could get it from her local library - she is presently studying at University level (nutrition & immune issues) & was keen to learn more.
By the way, our library did not have one copy of anything connected with PMR 2015 so I requested they consider buying Dr Kate's book - I am pleased to say they did.
Don't give up, keep asking & keep reading others helpful advice - we are paddling this ship together.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Prednisolone issues!
Shoulder Tendon issues
GCA and respiratory issues?
Started w Sinus issues in left ear
